Funded projects
EuroQol Research Projects – This table lists the ongoing and completed research projects that have been funded by the EuroQol Research Foundation. (You can also see a downloadable version of the table here)
| Project Id | Title | Abstract | Project PI / Applicant Name | Working Group | Approved Budget (EUR) | Status | Start Year | End Year |
|---|---|---|---|---|---|---|---|---|
| 1931-RA | Exploring the development, methodological quality, and applications of the EQ-5D population norms - Extending the EQ-POPs | Population norms derived from EQ-5D data play a pivotal role in health-related quality-of-life assessment, serving as standardized benchmarks for comparing individuals' health status across diverse populations. However, methodological inconsistencies and a lack of established guidelines pose challenges to their reliability and usefulness. Building upon prior research efforts, this multidimensional project aims to address these challenges and enhance the accessibility and usability of EQ-5D population norms. The specific aims of the project are to systematically review existing literature on EQ-5D population norms (Aim 1), develop comprehensive guidelines for their development and reporting (Aim 2), and establish an interactive website on the EuroQol platform for easy access to norm data (Aim 3). Part 1 involves a systematic review adhering to PRISMA guidelines to identify relevant literature. Part 2 aims to formulate recommendations through a modified Delphi process, informed by the systematic review findings. Part 3 entails the creation of a beta website, guided by principles of user-centered design and iterative development. This project represents a concerted effort to refine and expand the scope of EQ-5D population norms. It aligns with the EuroQol Group's mission of advancing high-quality research and evidence-based decision-making in healthcare. | Fatima Al Sayah | Populations and Health Systems | 153402 | Ongoing | 2024 | 2026 |
| 1985-EO | Request for a travel scholarship to attend ISPOR Europe 2024 to present and disseminate findings | This grant proposal seeks a travel scholarship to support the PhD candidate, Guangjie Zhang, in attending the ISPOR Europe 2024 Conference, scheduled for November 17-20, 2024, in Spain. One of her projects has been accepted for presentation as a poster in the ' Epidemiology and public health' section. The study, titled 'How do EQ-HWB candidate items perform in individuals with health conditions across varying education levels?' [EPH20], utilized item response theory and differential item functioning analyses to examine item performance and response heterogeneity in relation to education levels in the preliminary version of the EQ-HWB within a Chinese population. This project aims to determine whether the EQ-HWB is suitable for one of the target populations, specifically those who are vulnerable and reliant on social care resources, and may have lower educational attainment, potentially leading to difficulties in understanding the EQ-HWB items. Data were obtained from the second-round psychometric survey conducted in China in 2022 during the development of the EQ-HWB. The findings indicated that only a limited number of items posed difficulties for individuals with low education levels. The project was funded by the EuroQol Research Foundation (EQ Project 20180600). | Guangjie Zhang | Education and Outreach | 1558 | Ongoing | 2024 | 2025 |
| 1912-RA | Validating the EQ-HWB and its modifications among informal carers of people living with dementia | This research builds on an ongoing project funded by the Global Brain Health Institute and cross-sectional survey dataset collected from informal carers of people with dementia from three English-speaking countries: Australia, Ireland, and the UK (at the time of submission n=309). The first aim, qualitative in nature, seeks to evaluate the comprehensibility and acceptability of changes to selected EQ-HWB items, their layout, and ordering proposed by the EQ-HWB developer team. This will involve think-aloud semi-structured interviews with a purposefully selected diverse group of informal carers who have expressed interest in follow-up discussions as part of a previous cross-sectional survey. Interviews are designed to 1) rigorously test the hypothesis that the changes to the EQ-HWB represent an improvement—or at least no worsening—compared to the original version; and, 2) advance ongoing work of the EQ-HWB WG and DSWG to develop standardised guidelines for testing modifications by contributing essential new insights from the think-aloud interviews, helping to refine and solidify methodologies that can be applied across diverse contexts. The second aim, quantitative, utilises the existing dataset (n=309) to explore the psychometric properties of the EQ-HWB in a population of informal carers of dementia in a multinational context. This will involve exploratory and confirmatory factor analysis to investigate the dimension structure of the EQ-HWB alongside EQ-5D-5L. Additional analyses will assess convergent and divergent validity, floor and ceiling effects, and known-group differences on variables like dementia severity, type, past & current caregiving status, intensity of support, etc. | Irina Kinchin | Descriptive Systems, EQ-HWB | 29912 | Ongoing | 2025 | 2025 |
| 1930-RA | Investigating alternative methods for linking bolt-on and base instrument value sets | In some clinical conditions, it may be worthwhile to extend the EQ-5D instruments by adding bolt-ons to the core five domains. In view of a multitude of possible bolt-ons, it is important to develop a reasonably cheap, reliable, and consistent valuation approach. Currently, the most developed idea is the scaling factor approach (SFA). However, SFA can be operationalized in various manners, but there is limited evidence to compare these. We seek to provide evidence in three areas. First, we plan to compare three strategies for linking the bolt-on to existing EQ-5D value set: (a) standalone bolt-on valuation; (b) estimating the SFs by comparing bolt-on preference data with pre-existing core domains importance; (c) estimating the SFs entirely within the new bolt-on valuation study (to account for changes in preferences across studies). Second, we plan to compare the two types of discrete choice experiments (DCE): with and without duration (to reduce the cost, we disregard the time trade-off method in the current proposal). Third, to assess the possibility of applying different SFs for the five core domains. Data will be collected through computer-assisted web interviews in Poland and China, with respondents valuing EQ-5D or EQ-5D+bolt-on health states using DCE with or without duration (hence, four arms). We plan to recruit 3000 respondents in each country (1000 in each of bolt-on arms, 500 in each of EQ-5D arms). We plan to compare the resulting models based on the convergence of estimation, estimation errors, face-validity of the results (e.g., inconsistencies). | Michał Jakubczyk | Valuation | 114820 | Ongoing | 2024 | 2025 |
| 1973-TVG | Three weeks research visit to University of Melbourne, Monash University and University Technology Sydney to: facilitate collaborative work on two RFPs; present EQ-based papers at various seminars, and; revise a grant application investigating relevant bolt-ons for older adults. | **Description of the Travel / Visit for which the grant will be used** Funding is requested to allow me to visit Gang Chen (Melbourne Uni), Lidia Engel (Monash Uni) and Brendan Mulhern and Rosalie Viney (UTS). The purpose of this trip is detailed below: 1) I am the PI of the EQ-grant 1830-RA (Response heterogeneities in EQ-VAS), together with co-investigator professor Gang Chen at University of Melbourne, and co-investigator Dr Admassu Lamu at NORCE, Bergen. Lamu and I will complete a preliminary set of analyses by early November, for me to discuss and revise with Chen in December and January. I consider it to be of crucial importance for this project that Chen and I get the opportunity to sit together and complete the analysis and jointly draft the planned paper. 2) Lidia Engel is the PI in EQ-grant 1863-RA (Psychometric performance of utility measures in older adults), on which I am the nominated DSWG advisor (Pei Wang and Brendan Mulhern are also involved). The four of us met at the EQ-Plenary meeting to make plans for completing this work by the end of December. We decided to meet physically at Monash University December 9th – 12th to discuss and resolve key issues on this extensive review. 3) Revise a grant application on bolt-ons. Together with Gang Chen and members of the DSWG (Brendan, Fanni, Tessa) I submitted a grant application in 2022 to empirically test the potential relevance of various bolt-ons. A revised version was resubmitted, which was again sent back with the opportunity to resubmit. Given the strategic importances of bolt-ons and older populations, and the recent progress on bolt-on research, it is time to revise this planned project in close collaboration with the DSWG. To make sure that a revised project is completely aligned with the Group’s strategies on bolt-ons as well as related work commissioned by DSWG, it is crucial that Chen and I discuss all details in close collaboration with Brendan. 4) Give seminar presentations (at Monash CHE; Melbourne CHP; CHERE at UTS; ANU in Canberra; Ministry of Health, NZ), based on various EQ-related research: i) The use of EQ-5D in population health surveys for analysing health inequalities; ii) the increasing importance of health behaviours for explaining diversities in HRQoL (EQ-5D), and; iii) Norwegian priority setting criteria: outcomes (EQ-5D being the preferred measure), costs, severity. Expected output of the Travel / Visiting Grant: 1) Completed analyses and a paper for submission, based on EQ-grant 1830-RA 2) First draft of the report on EQ-grant 1863-RA 3) A revised grant application, including draft of questionnaire, investigating potential bolt-ons of relevance for older adults in Australia (and other countries) 4) Increase the interest in using the EQ-5D instrument to address health policy questions beyond the context of HTAs Timelines: I seek funding for a duration of three weeks; two weeks in December and the last week of January 2025. In between, I will take a couple of weeks off, and give invited presentations at ANU in Canberra, and Ministry of Health, NZ, both institutions will refund my airfares to/from Melbourne. Week 1 (December 9th – 13th): - Engage with Lidia, Pei and Brendan collaborating on EQ-grant 1863-RA - Meetings with Gang Chen and Brendan on planned revised bolt-on proposal - Seminar presentation Week 2 (December 16th – 20th): - Engage with Gang Chen collaborating on EQ-grant 1830-RA - Seminar presentation Weeks 3 (January 23rd -31st): - Visit to CHERE, UTS. Engage in strategic EQ related discussions with Brendan and Rosalie as DSWG and Exec chairs respectively. Advise CHERE QoL research team on EQ related projects - Engage with Gang Chen collaborating on EQ-grant 1830-RA - Seminar presentations | Jan Abel Olsen | Descriptive Systems | 9965 | Ongoing | 2024 | 2025 |
| 1926-RA | Developing a EuroQol guidance for testing psychometric evidence for generic preference based instruments | Background: There is no clear guidance as to how mixed methods psychometric approaches should be used to assess instruments with characteristics common to the EQ suite, such as descriptive systems measuring multiple dimensions and their associated value sets, and bolt-on dimensions. Discussions between the Descriptive System, Youth and EQ-HWB Working Groups highlighted this lack of guidance as a major gap for moving instruments forward. This is also recognized in the strategic plan, where a key objective is to “Support and encourage good practice in the analysis of EQ instruments’ data”. Aims: This program of work aims to develop EuroQol guidance for testing psychometric properties of generic preference instruments. This includes two documents: 1. Guidelines for the use of qualitative methods for the testing of EuroQol instruments and modifications. 2. Guidelines for the use of quantitative methods for the testing of EuroQol instruments and modifications Methods: The program is organized into three complementary work packages (WP) that will inform the development of the psychometric guidance documents. The three WPs are: Work package 1 – Critical assessment of existing guidelines and literature A targeted review of the literature will be conducted to summarize existing guidelines for the psychometric analysis of patient reported outcome measures. The data extracted will be used to critically assess and synthesise the guidelines identified, and how they pertain to the analysis of GPBMs. This will be done using objective assessment of what the guidelines include and how they compare and differ, and subjective assessment of the strengths and weakness of the guidelines, the feasibility of the guidelines for GPBMs and any gaps for the assessment of GPBMs. Learnings from this review will be triangulated with findings of a review of validation studies (1818-RA), which was conceive as part of this program of work. Work Package 2 - Empirical comparison of methods for testing the EuroQol Suite of instruments We will empirically compare quantitative psychometric methods for testing EQ instruments. We will focus on issues specific to the EQ suite of instruments. We will conduct all analyses on the same datasets. These datasets include the EQ suite of instruments (EQ-5D-5L, EQ-HWB, EQ-5D-Y-5L and bolt ons) alongside other non EQ instruments. Examples of methods that will be applied include classical test theory, dimensionality assessment, Rasch analysis and item response theory. We will also compare approaches within each set of analyses, with a focus on CTT. Work Package 3 - Development of psychometric guidance documents for the EuroQol Group We will develop guidance for testing EuroQol instruments and their possible modifications, through consensus based technique (Dephi). Responders will be the project team, other key EQ members, and non-members experts in psychometrics and in generic preference based measures. Responders will be presented a series of statements and will be asked to respond to them through open and closed ended questions. The objective will be to reach consensus on a final list of recommendations, through iterative rounds. | Brendan Mulhern | Descriptive Systems | 155960 | Ongoing | 2024 | 2026 |
| 1867-RA | Assessment of the use of EQ-5D and other generic health-related quality of life measures to evaluate the health outcomes associated with extreme weather events and related climate change impacts: A systematic review | Background and aim: Climate change presents a major public health concern globally. Extreme weather events and related climate change impacts including extreme heat, cyclones, bushfires, floods, and droughts have become more frequent and intense, posing significant challenges to global health. As health risks from climate change increase, understanding the appropriateness of using health-related quality of life (HRQoL) measures such as EQ-5D to evaluate the health impact associated with climate change is important. This systematic review will describe the extent to which EQ-5D and other HRQoL measures have been used in the evaluation of HRQoL and assess their measurement properties, in the context of climate change, focusing on the health impacts of extreme heat, cyclones, bushfires, floods, and droughts. Methods: This review will consider studies published from January 1990 to January 2024. Databases such as MEDLINE, the Cochrane Library, Scopus, and Web of Science will be searched for relevant literature. The review process will adhere to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Generic HRQoL measures, including both preference-based and non-preference-based instruments for use in adult and youth populations, will be considered, and their measurement properties will be summarized in terms of feasibility, validity, sensitivity, and reliability. Results: The review is expected to identify how the EQ-5D and other generic HRQoL measures have been implemented and what evidence exists concerning their measurement properties in the evaluation of HRQoL that could be impacted by climate change extreme weather-related event across different populations and settings. Conclusion: This systematic review aims to provide a better understanding of the appropriateness of using EQ-5D in the context of climate change. It will identify strengths and limitations in the current implementation of EQ-5D compared to other generic HRQoL measures and offer insights into developing a more robust EQ-5D instrument. | Yiting Luo | Descriptive Systems, Populations and Health Systems | 24548 | Ongoing | 2024 | 2025 |
| 1961-EO | ISPOR 2024 Dissemination: Advancing Understanding of Psychometric Validation in EQ-5D-Y Instruments and Health State Valuation | This grant proposal seeks funding to support the dissemination of research findings through two poster presentations in the "Pediatrics" and "Patient-Centered Research" sections at the ISPOR 2024 Conference in Spain. My first study, "**Construct Validity and Test-Retest Reliability of the Three-level and Five-level Versions of the EQ-5D-Y: A Systematic Review and Meta-Regression of Head-to-Head Comparison Studies**" [SA65], uses a systematic review approach to analyse the factors associated with the construct validity and test-retest reliability of the three-level (Y-3L) and five-level (Y-5L) versions of the EQ-5D-Y instrument using results from published head-to-head studies. We initially submitted a funding proposal to EuroQol for this systematic review but did not receive funding. However, recognising its strategic importance for the Youth Populations Working Group (YPWG) and EuroQol, we proceeded with the research. The study involved a head-to-head comparison of the Y-3L and Y-5L versions, providing a comprehensive analysis of their psychometric properties and distributional characteristics. The results were presented at the EQ Plenary 2023 and ISOQoL 2023, where they received significant attention and were cited in the recent EQ-5D-5L user guide. Building on the initial review, we conducted a secondary analysis to determine which version—Y-3L or Y-5L—performs better in specific paediatric subgroups. This extended analysis is timely, supporting the upcoming launch of the Y-5L and the symposium at ISPOR Barcelona, where the focus will be on enhancing the understanding of EQ-5D-Y instruments. By providing nuanced, subgroup-specific evidence, our study supports informed decision-making among users and stakeholders, reinforcing the value of the Y-5L in paediatric health assessments. My second study, " **Who prefers death to life in composite time trade-off interviews and why: A mixed-methods analysis of the Singapore EQ-5D-5L valuation study**" [PCR43], is a secondary analysis of the recent Singapore EQ-5D valuation study, co-funded by the EuroQol Research Foundation (1741-RA). It examines the characteristics of respondents who prefer immediate death over living in poor health states during composite time trade-off interviews. Using data from 500 Singaporeans, the study identifies socio-demographic factors and motivations behind these preferences, such as concerns about physical, mental, and financial burdens on their families. The study found that middle-aged respondents, who often face dual caregiving roles, are significantly more likely to prefer states worse than death. This paper will also be presented at the EQ Plenary 2024. **Strategic Impact for EuroQol Group** Both studies provide strategic value to the EuroQol Group by delivering crucial evidence-based insights for the development and application of EQ-5D instruments. The first study is particularly significant as it supports the launch of the Y-5L and aligns with the symposium at ISPOR Barcelona. It offers actionable insights that will aid the YPWG in selecting the most effective tool for paediatric health assessments. The second study provides guidance on culturally sensitive valuation practices and resource allocation in Asia. Collectively, these findings that I will be presenting at the ISPOR 2024, advance EuroQol’s mission to optimise global health-related quality of life measurement, ensuring that EQ-5D tools are both scientifically robust and culturally relevant. | Ling Jie Cheng | Education and Outreach | 1800 | Ongoing | 2024 | 2025 |
| 1899-RA | An EQ-5D multilayered measure of HRQoL: what are the perspectives of key stakeholders? | In response to the limitations of the EQ-5D descriptive system, approaches such as addition of condition specific ‘bolt-on’ are being explored with the aim of improving the measurement sensitivity and relevance of EQ-5D in specific disease contexts. The Descriptive System Working Group (DSWG) of the EuroQol Group has proposed a different approach where the EQ-5D will be developed as a multi-level hierarchical instrument, where dimension specific items (or Dimension Specific Modules (DSM)) will be developed and nested below each of the existing five core dimensions. This project seeks to understand, from the perspective of key prospective users, the relevance, and expectations from such an instrument. This will be done via semi structured interviews with key international stakeholders from industry, government, academia and decision making contexts. The interviews will be guided by ‘mock DSMs’ for Mobility and Pain/Discomfort which will be developed using existing items from other instruments measuring the same, or overlapping constructs, identified by a targeted literature review. The ‘mock DSM’ will be used to facilitate the planned interviews, provide an example, and generate appropriate responses from study participants. We are proposing this approach on the basis that, provision of a ‘mock DSM’ during the interviews will put the subject matter in context and generate appropriate responses from study participants. Key prospective users of a DSM will be recruited internationally. Interviews will be conducted virtually, recorded, and transcribed for analysis. Thematic and content analysis of the transcribed data will be conducted, and the results presented in a de-identified manner. | Rebecca Addo | Descriptive Systems | 21728 | Ongoing | 2025 | 2026 |
| 1883-RA | Exploring perceived interactions between EQ-5D-5L and bolt-ons: a qualitative valuation study using EQ-PVT | Background: Bolt-ons are additional dimensions that can be attached to the EQ-5D to capture aspects of health-related quality of life (HRQoL) that are not covered by the five core dimensions. The addition of bolt-ons may significantly impact utilities and introduce complexities in health valuations, such as increased respondent burden and potential interactions between the core and bolt-on dimensions. To date, no qualitative studies have explored the thought processes of individuals when valuing EQ-5D+bolt-on health states. Objectives: To better understand how individuals value EQ-5D-5L+bolt-on(s) health states compared to EQ-5D-5L: i) underlying rationales for health preferences when valuing health states consisting of different (number of) dimensions, ii) considerations of other HRQoL areas than the five core dimensions when valuing EQ-5D-5L health states, iii) potential interactions between the core dimensions and selected bolt-ons (including qualitative testing of the ‘scaling factor’ assumption), and iv) differences between using single and multiple bolt-ons. Methods: We will perform health state valuation using composite time trade-off tasks in EQ-PVT followed by a qualitative semi-structured interview. A total of 60 participants from the adult general population in Indonesia will be purposively recruited. The study will consist of three arms using unique bolt-on dyads to enhance variability and richness of responses: i) vision and tiredness, ii) cognition and social relationships, and iii) skin irritation and self-confidence (‘psoriasis bolt-on’). Each participant will value 10 pre-selected health states of EQ-5D-5L, EQ-5D-5L with the first bolt-on, and EQ-5D-5L with two bolt-ons in a forward or backward stepwise manner. The qualitative interview guide will include questions on underlying preferences for health states, consideration of other health areas than the five core dimensions, perceived connections between the core dimensions and bolt-ons, and importance of different health dimensions. The framework method will be used to analyze the qualitative data obtained from the interviews. | Stevanus Pangestu | Valuation | 49925 | Ongoing | 2024 | 2026 |
| 1881-RA | From Routine Collection to Routine Care: Understanding the Barriers and Facilitators to Greater Adoption of PROMs in Clinical Practice | Patient reported outcome measures (PROMs) that collect patients’ perspectives of their symptoms, quality of life (QoL) and functionality are increasingly being used in routine clinical settings, including oncology services. However, challenges in the implementation and uptake of PROMs and using patient-reported outcomes (PROs) in the delivery of routine care remain. Collecting PROMs data without subsequently discussing the PRO results with the patients can demotivate them to answer subsequent questionnaires. In December 2020, the Northern Region Head and Neck Cancer Service began collecting PROMs: EQ-5D-5L as a generic measure and FACT-H&N as a more disease-specific measure of functional outcome. PROMs are routinely collected by the service across the duration of the patient's follow-up (at baseline around the time of diagnosis, then 6, 12, 18 and 24 months follow-up) but we have identified challenges in effectively using PROs in the routine clinically setting when discussing treatment and management. The primary objective of this study is to investigate factors that may be influencing (positively or negatively) the integration of PROs into routine clinical care. The study will also address the role of healthcare professionals in integrating PROMs and PROs into the clinic routine. We will use a qualitative research method, with focus group discussions using a semi-structured interview guide. The study population will be healthcare professionals (surgeons, oncologists, radiologists, pathologists, dentists and nurse specialists) from the northern region of Aotearoa New Zealand. The factors that we hope to identify from this study may be generalisable to other head and neck oncology services and, also oncology services more broadly. The findings of this study may be relevant to non-oncology services looking to implement PROMs successfully and use PROs at their routine clinic. We also expect the study to identify a number of other research questions and therefore 'seed' further research on the use of PROMs in clinical care. | Paula Lorgelly | Populations and Health Systems | 46220 | Ongoing | 2025 | 2026 |
| 1910-RA | Qualitative study of the modified EQ-HWB in cancer patients. | Background: The EQ-HWB is a new broad generic measure of health and well-being for use in economic evaluations of interventions across healthcare, social care, and public health. While the EQ-HWB has shown promising measurement properties, an outcome measure that is patient-centred should encompass the aims, values and treatment effects that are prioritised by individuals. The EQ-HWB developer team have recently proposed some modifications to the wording and ordering of certain items of the instrument. However, there is no evidence about how well the modified EQ-HWB performs in this regard. Objectives: We aim to qualitatively examine the relevance and comprehensibility of the modified items in the EQ-HWB compared to the experimental one among breast cancer patients. Methods: The EQ-HWB has earlier been tested in breast cancer patients in Indonesia in a cross-sectional survey. This study will leverage existing patient contacts obtained in the previous study to recruit 40 patients for the qualitatively testing of the modified EQ-HWB. A heterogeneous sample of diagnosed breast cancer patients aged 18 years and older who are undergoing or have had treatment for breast cancer will be invited to participate in qualitative interviews. Semi-structured one-on-one qualitative interviews will be conducted to explore patients’ experiences of completing the experimental version of EQ-HWB and the modified one. The interviews will be taped and transcribed using thematic analysis. A thematic coding framework will be used to develop main themes that will be subsequently aligned with the objective of the project. Note that the Descriptive System Working Group (DSWG) with input from the EQ-HWB WG is looking to develop guidance on options on how to test modifications. If the guideline ready before data collection starts, we will follow it in this study. | Fredrick Dermawan Purba | EQ-HWB | 24882 | Ongoing | 2024 | 2025 |
| 1863-RA | Psychometric performance of preference-based instruments in older adults: a systematic review | Population ageing is a serious public health issue globally. Preference-based instruments are suitable for assessing the impact of ageing as they not only measure health-related quality of life (HRQOL), but also provide the value of HRQOL. Given the co-existence of various preference-based instruments, such as EQ-5D and SF-6D, it is important to know which measure is most appropriate in older adults. Hence, the project will systematically review and summarize the current evidence on the psychometric properties of preference-based measures in older adults across different settings. Four major databases (Medline, Embase, PsycINFO and CINAHL) will be searched for original studies, assessing measurement properties including reliability, validity, sensitivity, and responsiveness of preference-based instruments in older adults (i.e., age ≥ 65 years). Two independent reviewers will screen titles, abstracts, and full-text to extract key information of studies. The methodological quality of included studies will be checked according to the COSMIN risk of bias checklist. | Pei wang | Descriptive Systems | 19976 | Ongoing | 2024 | 2025 |
| 1818-RA | A Systematic Review of the Validity, Reliability, and Responsiveness Studies of EQ-5D-5L: Methodological Insights and Future Directions | Background: Over the past few decades, preference-based Health-Related Quality of Life (HRQoL) measures, notably the EQ-5D developed by the EuroQol Group, have gained prominence. Despite numerous studies of measurement properties published in the literature, there is a lack of guidelines for validating preference-based measures and knowledge about the methodological quality of such studies. Aim: This study aims to systematically review and evaluate the methods used in published validity, reliability, and responsiveness studies of EQ-5D-5L across various health conditions. Methods: Adhering to the PRISMA and COSMIN guidelines, our approach involves meticulous identification of research questions followed by a three-pronged search strategy across prominent databases. Selected articles will undergo a rigorous review process, with data extracted systematically and summarized narratively and/or quantitatively. A tool will be developed and used to evaluate the appropriateness and quality of the identified studies Impact: This review provides the first insights into the variations, appropriateness, and quality of methods used to evaluate the measurement properties of EQ-5D-5L. It will contribute to the Descriptive Systems Working Group’s psychometric research programme, aimed at developing guidelines for psychometric validation studies of EuroQol instruments. | Nan Luo | Descriptive Systems | 48332 | Ongoing | 2024 | 2026 |
| 1954-RA | Translation of the EQ-HWB into Dutch language | Aim: to translate the EQ-HWB from English into Dutch. The translation will be researcher led and not translation agency led. Instrument: instrument(s) to be translated are the EQ-HWB (25 items) and EQ-HWB-S; all three modes of administration, proxy and both the original (official) and modified versions. Methods: We will translate the EQ-HWB into Dutch according to the EQ-HWB translation guidelines that were published by the EuroQol Foundation in 2022. | Juanita Haagsma | EQ-HWB | 17185 | Ongoing | 2024 | 2025 |
| 1850-RA | Assessing TIPS Attributes using DCE with Kaizen Tasks: a feasibility study | The five-level EuroQol Toddler and Infant Populations (EQ-TIPS) is under development as a health-related quality of life (Hr-QoL) measure for toddlers and infant populations, aged 0 to 36 months. Each of its eight items (and response options) can be transformed into an attribute with five levels for a health valuation study. However, it is unclear whether severity (i.e., order of the five levels) concords with preferences along each TIPS domain. Furthermore, the EuroQol Group lacks a method for TIPS valuation, particularly one that works well in small samples. The primary aim of this feasibility study is to assess TIPS attributes using DCE with kaizen tasks. This methods research will address two questions critical for TIPS development: (1) Whether severity concords with preferences along each TIPS domain? (2) To what extent do the TIPS attributes influence preferences? Overall, this 5-level instrument has 32 incremental effects; therefore, this study will test for 32 potential discordances at the respondent level and estimate their effects on choice in aggregate. METHODS: In the proposed DCE survey (Limesurvey), 400 UK adults (Prolific.co) will complete 24 kaizen tasks (Craig et al. 2022). Each task will show a single TIPS profile (1 month of a 1-year-old child) and five possible changes (4 gains and 1 loss). To complete the task, a respondent makes four improvements (i.e., 1st, 2nd, 3rd and 4th). Apart from the preference evidence, this task captures two types of discordances: (type-1) when a loss is selected as an improvement and (type-2) when a gain is not selected (i.e., 5th). Using these responses, we report the frequency of discordances and estimate the main effects (e.g., the effect of changing Level 2 to 1 on log-odds) using a conditional logit model. The discordances may indicate potential areas for instrument development (aim 1) and the set of main-effect estimates may inform future experimental designs (aim 2) as well as task designs. Based on the evidence from this feasibility study, future studies may examine differences by child age and problem duration or examine preference heterogeneity based on observable characteristics (e.g., experience with sick children, experience as a child, or caregiving) or latent characteristics (e.g., latent class analysis). | Benjamin M. Craig | Valuation, Youth | 85529 | Ongoing | 2024 | 2025 |
| 1951-RA | Translating the EQ-HWB and EQ-HWB-S for Germany | The EQ-HWB is a new generic measure currently under development and testing for the aim of gauging the impact of health, social care and being a carer on quality of life. As of yet, the measure has an 'experimental' status, as further evidence on the measures' performance in these target populations and across different countries and cultural contexts is urgently needed. Since the early development stages of the EQ-HWB, Germany was involved in the face validity and psychometric testing of the candidate item pool. Since then, the measure has undergone some change, however, the translation of the German version of the EQ-HWB has remained in the stages of the candidate item testing, which is outdated and prevents further validation of the current measure itself. Based on early validation studies and the translation work that was previously done, potential modifications to the measures were proposed regarding the item wording, the layout and for response scale labels, which were also not translated for Germany. With the large-scale EQ DAPHNIE project there is a major study underway, which seeks to collect data on the EQ-HWB for Germany using the German version, which is, however, not available yet. Therefore, we would like to argue that with the EQ DAPHNIE project at the horizon for Germany and with the need to further validate the EQ-HWB in major language versions, there is a strategic opportunity for the EuroQol Group to support the translation of the current version of EQ-HWB for Germany including the proposed modifications. Thus, this study aims to conduct a full researcher-led translation of the EQ-HWB and EQ-HWB-S Paper Self-complete versions including the proposed modifications into German to make it available for future validation or valuation work. In accordance, with the EuroQol translation guidelines, this involves two forward and two backward translations by four independent translators, which are fluent in English and German, followed by a total of 16 cognitive debriefing interviews to ensure the clarity, naturalness, and adequacy of the translations, while also confirming that respondents interpret the wording as intended. First, the translation process involves two independent forward translations into German from the UK English source versions for the current and modified questionnaire version, which will be reconciled afterwards followed by the production of the first consensus version. The selected forward translators - Kristina Ludwig and Ole Marten – are fluent in English and native German speakers. Secondly, based on the first consensus version two independent back translations of that version will be produced and reconciled in a subsequent back translation meeting. The appointed backward translators - Anna-Katrine Sussex and John Andrew Grosser – are both bilingual in German and English with no to little prior experience on the EQ-HWB questionnaires. As a result of the back-translation meeting, a draft second consensus version will be generated. As agreed with the VMC, the combined forward and backward translation will be collated in a first report to the VMC liaison. Upon approval of the translation stages by the VMC, the finalised second consensus version will be carried forward to conduct a cognitive debriefing on the translations. Overall, 16 respondents will be recruited allocated to two different groups of eight respondents each. The groups are designed to lighten the cognitive load of the cognitive debriefing exercise, since both the current (official) and modified self-complete versions will be tested. In the first group, respondents will be debriefed about the current (official) self-complete version first and then be asked about the preferability of the modifications, whereas the second group will see the modified version first and then will be asked about whether any of the official wording is preferable. Generally, this study will follow the design proposed by the VMC for the translation work across Slovenia, Hungary, the Netherlands and Germany. | Ole Marten | EQ-HWB | 15903 | Ongoing | 2024 | 2024 |
| 1872-RA | Testing the validity and responsiveness to change of the EQ-HWB-S in a 4-week online study evaluating the effects of mindfulness training for meditation app users with a range of mental health statuses; The Medito Study. | Background The EQ Health and Wellbeing (EQ-HWB) is a new generic measure that has been developed internationally for evaluating interventions in health, public health, and social care including the impact on patients, social care users, and carers (Brazier, J. et al., 2020; Peasgood, T. et al., 2022). However, there is only preliminary information on its performance in people in diverse samples, such as people with mental health conditions. The EQ-HWB-S will be included in a new study by the Contemplative Studies Centre (CSC), University of Melbourne, which seeks to measure engagement and utility in the use of mindfulness apps for addressing mental health concerns use for people who seek to improve their mental health. We know that meditation app users have poorer mental health status than the general population. In a recent CSC study of 880 meditators in the United States, almost a quarter of that sample (24%) had a moderate or severe mental disorder (K10,(Soto & John, 2017)), 15% were screened as likely to be psychotic (PID-BF; (Krueger et al., 2012)), 11% met the cut-off for PTSD 5 (PC-PTSD-5; (Prins et al., 2016)), and 37% reported that they had a current mental health diagnosis, (CSC study, under review). In the current study, we will similarly be able to measure mental health status through several psychological measures, including the Kessler 10 (K10) where psychological stress is classified into four groups (low, moderate, high, very high)(Soto & John, 2017)). Also included are the Wellbeing (WEMWBS), Satisfaction with Life Survey (SWLS), and Self-efficacy (GSE6). The EQ-HWB-S was included in this study as an instrument that is potentially responsive to change in QoL over time and between groups. A pilot value-set from the UK is now available (Mukuria, C. et al., 2023) for the EQ-HWB-S, valued on the zero to one scale necessary to calculate Quality Adjusted Life Years (QALYs). As, this study has not yet commenced, we will be able to include different versions of the EQ-HWB-S within the study design, enabling testing of potential changes to the EQ-HWB-S that are currently being considered. We are in the process of discussing with the EQ-WHB-S working group what changes they would like us to include in this study. This data presents an opportunity to investigate the validity and, most importantly, the sensitivity to change, of the EQ-HWB-S. Baseline and follow-up data will be available and it is anticipated that the mindfulness app will improve participants’ quality-of-life over time. Aims The aim of the research for which funds are requested in this grant application is to measure the validity and responsiveness to change of the EQ-HWB-S in data from a trial to evaluate the effects of an app-based 4-week online, introductory mindfulness program. Specifically, we aim to: 1. Validate the scale in this population using: a. feasibility and response distribution, b. Convergent validity analysis against a range of relevant self-report scales c. Known groups validity analysis across a range of known groups (outlined below) 2. determine if the instrument is responsive to change over time (between baseline and post intervention) 3. Collect evidence on changes to the EQ-HWB-S through randomisation of changes to selected items and/or layout and/or ordering in the EQ-HWB-S, as requested by EuroQol. Method Upon commencing use of the Medito app, users will receive a notification advertising the research, providing information about the study, and inviting them to participate. Users will then navigate to a Qualtrics survey containing further information about the study and a consent form that they will need to complete prior to joining the study. Survey participants who complete the study will be eligible to enter the draw to win one of 8 AUD$250 prepaid Visa gift cards. For each participant that completes the study, the CSC will also donate AUD$1 to the Medito foundation (up to a maximum of AUD$1,000). The overall time commitment for completing each survey does not exceed 15 minutes. Recruitment will occur directly via the Medito app, with new users being invited to participate during a specified period of 2-3 months (depending on rate of recruitment). Medito will ask new users if they are interested in participating in a research study. Participants who confirm their interest will be directed to Qualtrics and given further information regarding the study. Analysis of EQ-HWB-S data EQ-HWB-S items will be assessed in terms of feasibility, response distribution, acceptability, distribution properties, convergent validity, known groups validity and responsiveness to change. Feasibility will be measured in terms of missing data. For response distribution, score ranges will be analysed (observed vs. possible range), and the floor (% with lowest possible score) and ceiling effects (% with highest possible score). Convergent validity will be assessed using Spearman correlations for ordinal data for the EQ-HWB-S items, sum-score, and index-score against the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), Kessler Psychological Distress Scale (K10), Satisfaction with Life Scale (SWLS) and Self-efficacy (GSE6). Correlations will be measured using Spearman’s correlation due to non-normal distributions. Hypotheses for the convergent validity analysis will be determined a priori, as per our previous paper (Bailey et al., 2024). Known group validity will be assessed through comparing groups with different expected QoL impacts. The EQ-HWB-S will be investigated at the item, level sum-score and preference-weighted score levels using t-tests (Binary outcome) and one-way ANOVA (three groups). Effect sizes will be measured using Cohen’s (t-tests) or eta squared (ANOVAs). The main known groups analyses will include mental health status which have been found to be significantly different in two recent studies by the application team with different samples: caregivers of children 8 or less where families have experienced adversity(Bailey et al., 2024b), and parents of children with health conditions (Bailey et al., 2024a). A range of other known group validity tests will be included. We will also run regression analyses including demographic variables as covariates to determine whether differences between groups may be due to other factors, as per Bailey et al (2024a). Responsiveness to change overtime will be explored by calculating a change score between baseline and follow up for the EQ-HWB-S as per our previous published paper (Bailey et al., 2024b). This is reversed for the index scores where a positive EQHWB-S index change score would indicate an improvement in quality-of-life, and a negative change score, a reduction in quality of life. Change scores will then be calculated for WEMWBS, K10, SWLS and GSE, by categorising these variables into three groups: lowered, the same, and increased. One-way ANOVAs will be used to measure differences between groups for change in EQ-HWB-S scores. Analysis of differences between EQ-HWB-S versions, as advised by the EQ-HWB-S working group. | Cate Bailey | EQ-HWB | 24940 | Ongoing | 2024 | 2025 |
| 1898-RA | Quantifying Health Inequality: Systematic literature review of the application of EuroQol instruments | To address the EuroQol strategic goals of understanding the measurement properties of its suite of instruments, increasing international relevance, and the call by the PHS WG to understand how these instruments can be used to assess health inequalities, we propose a **systematic literature review aiming to**: 1. systematically search and review published and grey literature on that used (approved) EuroQol suite of instruments to assess social inequalities in health; 2. evaluate how these instruments have been applied to assess health inequalities in both population and clinical settings; 3. synthesize the evidence on the sensitivity of these instruments for inequalities including potential differences across EQ-measures and socioeconomic indicators; and 4. (when feasible) conduct meta-analysis on particular inequality stratifiers. Understanding social inequalities in health is an important research topic and the EuroQol suite of instruments can play an important role as outcome measures. This review will provide the state of play of the use of these instruments in this field of research and identify knowledge gaps. Project results will include the existing evidence on the sensitivity of EQ-instruments to capture health inequalities across sociodemographic/-economic subgroups and identify populations (across and within cultures/countries) for which EQ-instruments have been used to address inequalities. Crucially, gaps in the existing literature will be identified. We will also assess the level of quality of existing published and grey literature. These results are relevant for the EuroQol Group as population level use of its instruments become more prominent (e.g. POPCORN and DAPHNIE studies). | You-Shan Feng | Populations and Health Systems | 23320 | Ongoing | 2024 | 2026 |
| 1943-EO | ’Decolonizing health’: Perception and development of a conceptual health framework among children and adolescents in sub-Saharan Africa and its content comparison with the EQ-5D-Y | ABSTRACT Purpose Most health measurement instruments are based on a conceptual framework developed either in western cultures or solely amongst adults or both. Few investigators have considered how health is perceived by children and adolescents in low-income countries (LICs), particularly in sub-Saharan Africa. This study aimed to understand how health is thought about by children and adolescents in Malawi, develop a conceptual framework, and compare its content with that of the EQ-5D-Y. Methods Four focus group discussions were conducted in 2019- 2020 among children and adolescents aged 8-17 years attending schools around urban Blantyre, Malawi. After consent/ and assent from both parents and children, a semi-structured discussion in each group explored how participants understood health and what it meant to them. Each focus group was recorded and transcribed verbatim in English and thematic coding undertaken to identify concepts and sub-concepts of a new conceptual framework. Results The final sample had a total of 37 participants- 21 females and 16 males (mean age 10.4years). Qualitative analysis identified seven concepts (existence/functionality, self-care, strength/energy, peace of mind, absence of illness, God-given, and acceptance of illness). Comparison with the EQ-5D-Y showed that four of the five EQ-5D-Y dimensions were captured by the conceptual framework. The EQ-5D-Y dimension of “pain or discomfort” was not covered by the new conceptual framework. Further, the new conceptual framework had four concepts that are not reflected within the EQ-5D-Y (name them here). Conclusion A new conceptual framework of health has been developed among children and adolescents in Malawi containing seven concepts some of which are not reflection within the EQ-5D-Y descriptive framework. The EQ-5D-Y is a validated utility instrument for use in economic evaluation, but it may not fully represent the concept of health held by children and adolescents in LICs such as Malawi. | Lucky Ngwira | Education and Outreach | 3588 | Ongoing | 2024 | 2024 |
| 1934-TVG | Research visit Melbourne School of Population and Global Health of the University of Melbourne. | PhD candidate Ava Hoogenboom (EuroQol PhD network member) visited Kim Dalziel and the Health Economics Research group at the Melbourne School of Population and Global Health of the University of Melbourne for two weeks in October and November 2024. Ava works on project 1462-PHD aimed at examining the desirability, feasibility, and impact of involving children in the valuation of EQ-5D-Y health states. The project provides insight into the theoretical/normative and empirical underpinning of involving children in decisions on health and healthcare and into the various ways in which children can (potentially) be involved. This visit to Melbourne has yielded several results. Firstly, Ava expanded her knowledge on child health state valuation (HSV) by learning first-hand from researchers in Melbourne who are currently working on child HSV (e.g., the QUOKKA research project). For example, Ava met with Kim Dalziel and several of her PhD students on multiple occasions, exchanging knowledge and research experiences and brainstorming about how children could be involved in HSV. In addition, Ava attended several presentations related to health technology assessment, and visited the children's hospital to learn more about how healthcare workers include children in decisions and policy making regarding child health and how the hospital implements local and national policies regarding children's involvement. This visit gave Ava the opportunity to exchange expectations and ideas on how to involve children. Some research results were exchanged and it was agreed that Ava and the researchers at the children’s hospital would stay in touch to continue to exchange knowledge on the topic. Secondly, the visit provided the occasion and possibility to further elaborate on the contents and designs of the remaining work packages in Ava's PhD project. By meeting with other researchers, Ava and her supervisor Vivian Reckers-Droog explored options to expand the scope of some studies in the PhD project. That is, a planning for the remainder of Ava’s PhD trajectory was made that allows Ava to take a broader approach on the involvement of children in HSV. Thirdly, an additional (unplanned) visit to the Health Economics Group at Monash University took place, during which Ava spoke with multiple researchers (both PhD candidates and more senior staff). During this visit, Ava also attended presentations and got a chance to meet EuroQol (PhD network) members. Fourthly, during her visit to Melbourne, Ava strengthened and broadened her network (both with non-members and members of EuroQol) by meeting researchers from Australia, as well as other visiting researchers from the US and Sweden. This might result in future collaborations, especially with a group of researchers that focuses on involving children in policy making in a clinical setting. | Ava Hoogenboom | Education and Outreach | 4100 | Ongoing | 2024 | 2024 |
| 1941-RA | A VMC research proposal: developing and testing online Cognitive Debriefing interviews: these are ‘necessary’ – but are they ‘feasible’? | Background: The translation of Patient-Reported Outcome (PRO) measures necessitates rigorous cognitive debriefing (CD) interviews, traditionally conducted face-to-face (F2F). However, the COVID-19 pandemic underscored the need for viable virtual alternatives due to restrictions on in-person interactions. Objectives: This study, conducted by the VMC, aims to explore the feasibility and effectiveness of online CD interviews as part of translating Legacy versions, focusing on the EQ-5D-5L instrument in Mainland China and Hong Kong. The study also aims to provide practical insights and recommendations for enhancing virtual CD processes in linguistic validation, ensuring adherence to translation standards despite remote conditions. Methods: Utilizing a pragmatic qualitative design, the research will assess technical feasibility and evaluate participant experiences through video recordings, field notes, and exit interviews. Methods include adapting F2F protocols to online settings, including the EuroQol ranking exercise, and observing respondent interactions via Zoom. Pre-testing will precede formal interviews, allowing adjustments for optimal administration. | Zhihao Yang | Others | 17100 | Ongoing | 2024 | 2025 |
| 1923-RA | Comparison of DCE duration and EQ-VT in EQ-5D-Y-5L in the Netherlands | Background: The VWG and YPWG are jointly working on a protocol for the valuation of the EQ-5D-Y-5L. In the context of valuations of the EQ-5D-Y-5L instrument, we envisage that either an expanded version of the existing EQ-5D-Y-3L valuation protocol will be used, or a protocol that relies on DCE with a duration attribute. However, it has never been tested whether these methods produce similar results when valuing paediatric utility instruments. This study aims to make such a comparison and to develop a value set for the EQ-5D-Y-5L. Methods: Three samples will be collected: 1) a sample of n=1000 respondents that complete an online survey, comprising of 15 DCE split triplets. 2) a sample of n=500 respondents that are interviewed in a personal interview, with each respondent completing 10 cTTO tasks. 3) a sample of n=1000 respondents that complete an online survey, comprising of 15 latent scale DCE pairs. The DCE duration data will be analysed using a mixed logit model with an exponential discount rate. The latent scale DCE data is analysed using a mixed logit model. Predicted latent scale DCE values are anchored on the QALY scale using a mapping onto the mean observed cTTO values of each state included in the cTTO design. A value set is selected based consistency and discussion with the YPWG and VWG. | Bram Roudijk | Valuation, Youth | 221393 | Ongoing | 2024 | 2026 |
| 1874-TVG | A travel grant to support a clinical application of PROMs in pediatrics with a focus on EQ-5D-Y-5L and PedsQL | The travel proposal would allow us to further in-depth study the application of the EQ-5D-Y as a PROM in children, and would allow me to extent my expertise using an international environment. My living costs are to a large extent covered by a grant from the Sino-Dutch Bilateral Exchange Scholarship. However, traveling abroad and working temporary elsewhere cannot be accommodate by this sources. Therefore, I would like to apply for a travel grant, so I can continue my research in the rich international environment the EuroQol network offers. Exploring an international environment has been very beneficial for me so fare. As a PhD student supervised by Professor Jan Busschbach at Erasmus University Rotterdam, I specialize in validating EuroQol instruments for paediatric patients and their parental carers. With a background as a paediatrician at a Shanghai hospital, I aim to bridge clinical practice with research. Inspired by Professor Nancy Devlin's work at the University of Melbourne, I seek to explore the use of PROMs in clinical practice and health systems. I propose a visit to Melbourne, from June 2024 to March 2025, focuses on two objectives: conducting research on the clinical application of generic HRQoL instruments, notably the EQ-5D-Y in paediatric patients with rare diseases. This visit will then allow me to foster a research partnerships between Erasmus University Rotterdam, my hospital in Shanghai, and the University of Melbourne. Through this visit, I aim to gain insights into the potential role of PROM in clinical practice, enhance opportunities for the use of EQ-5D-Y in China and facilitate collaborations on future research projects relevant to my PhD studies and professional trajectory. During this 9-months study visit, I am keen to learn paediatric PROM co-design principles, embedding within an Electronic Medical Record (EMR), development of supporting clinical materials, and implementation skills which are all being progressed in the Australian context. I aim to immerse myself in the QUOKKA research projects, engage with the research team, attend seminars and meetings, and participate in discussions with PROMs end-users. Furthermore, I will have the opportunity to collaborate with several PhD students from the University of Melbourne's Health Economics team, who are also members of the EuroQol PhD network like myself. This will offer abundant collaboration opportunities, foster mutual learning among us and help establish a long-term partnership that extend beyond our graduation. Most importantly, I intend to contribute to a specific research project which outlined is describe below: Title: Exploring the Clinical Application of Patient-Reported Outcome Measures (PROMs) in Paediatrics: a Focus on the EQ-5D-Y-5L and PedsQL • Background: Despite the enthusiastic efforts and promising results of researchers, integrating PROMs into clinical practice poses challenges. For instance, a standard PROM scoring system does not exist and medical providers find it difficult to make clinical decisions using normative-based scores. Second, structural barriers within healthcare systems, including limited consultation time, lack of implementation recommendations, and prioritization of laboratory outcomes, may impede the seamless integration of PROMs. Third, successful integration relies on genuine co-design to meet the needs of clinicians and patients, as well as addressing challenges in embedding PROMs in the EMR, including feedback presentation formats to patients and clinicians. Moreover, using validated PROMs that have undergone psychometric processes to ensure that the PROM measures what is intended. Therefore, PROMs that are ideal for use in clinical practices are those that both assess important outcomes for patients and providers and are valid, reliable, and specific to the context of use for the disease under study. • Research Aim: The aim of this research is to study and explore how generic health-related quality of life instruments, such as the EQ-5D-Y-5L and Paediatric Quality of Life Inventory (PedsQL), can be used in routine clinical care as PROMs in paediatric patients with rare disease (ITP) or cancer (Neuroblastoma or Wilms tumour). Specifically, the study will focus on codesigning preferences for PROM integration with perspectives from patients, parental carers and clinicians, and piloting the use of PROMs in paediatric inpatient and outpatient settings. The following questions will be studied: a) Are generic measure of quality of life, like EQ-5D-Y-5L helpful in clinical consultation with individual patients? b) What is the added values of generic PROMs over disease specific measure? c) What are favourable characteristics of generic measure of quality of life needed to ensure usefulness? d) To what extent does the EQ-5D-Y-5L meet such characteristics? e) Are generic HRQoL measure helpful when assessing oriented related research and application, such as a measure of the productivity of the clinical unit and the effectivity of the interventions given? • Proposed methods: a) Study Design: we propose to conducted a longitudinal study including two time points, before and after treatment, and will employ a mixed-methods approach, incorporating both qualitative and quantitative methods. b) The local ethics approval will be applied once the funding has been approved. c) Participants: we aim to recruit paediatric patients and their parental carers in China from various disease severity levels, as determined by two clinical diagnosis: paediatric central nervous system solid tumour (Neuroblastoma or Wilms tumour), and immune thrombocytopenic purpura (ITP).Our goal is to enrol a total of 240 dyads consisting of children/adolescents and their parental carers at the baseline, i.e., 120 dyads for each disease group, with a follow-up rate of 70%. d) Data Collection: Patients will be asked to complete the EQ-5D-Y-5L and Paediatric Quality of Life Inventory (PedsQL) during their clinic visits or hospital stays. Parents will be asked to complete the EQ-HWB-S and EQ-5D-5L. e) Data Analysis: In addition to validating the psychometric properties of EQ-5D-Y-5L and PedsQL, our primary focus will be on investigating the acceptability and usefulness of these measures from the perspectives of both families and clinicians. We will prioritize assessing feasibility, response distribution, and construct validity, alongside exploring stakeholders' perspectives on PROM integration and utility in clinical care through qualitative data analysis of interviews and focus groups. Additionally, we will compare the performance of EQ-5D-Y instruments with PedsQL to understand their relative efficacy in paediatric clinical settings. | Wenjing Zhou | Youth, Education and Outreach | 22980 | Ongoing | 2024 | 2025 |
| 1880-TVG | Visit to National University of Singapore to complete and develop EuroQol projects | This travel grant supported a visit to Singapore to meet with stakeholders interested in using PROMs including the EQ-5D in the Singapore health system, and researchers conducing studies using routine collected EQ-5D to inform clinical decisions with PROM based decision aids. This was facilitated by a research rounds presentations at the NUS School of Public Health, and Singhealth Primary Healthcare. | Nick Bansback | Education and Outreach | 3440 | Completed | 2024 | 2024 |
| 1871-RA | EuroQol’s Data for the Assessment of Population Health Needs and Instrument Evaluation (EQ-DAPHNIE) – A Bridge Grant | The EQ-DAPHNIE Project aims to establish infrastructure for the EQ Group to assess population health using EQ instruments. It was funded for 3 years (2021-2024), with an intention to consider a second 3-year phase depending on the success of Phase 1. We have completed Round 1 survey in 5 countries, with predominantly English-speaking populations. This request is a 1-year bridge grant to maintain momemtum on the EQ-DAPHNIE project. Requested funds would support the EQ-DAPHNIE Team in 3 areas: 1) survey development and depolyment for Round 2 countries; 2) EQ member access to EQ-DAPHNIE data; 3) data analysis & knowledge translation. Remaining funds for the original EQ-DAPHNIE 3-year Phase 1 grant will be used to support the ongoing data collection for the planned 10 countries in Round 2. | Jeffrey Johnson | Populations and Health Systems | 88540 | Ongoing | 2024 | 2025 |
| 1928-RA | Psychometric Testing of the EuroQol Toddler and Infant Populations (EQ-TIPS) Measure of Health Related Quality of Life | The EuroQol Toddler and Infant Populations (EQ-TIPS) was developed as a generic measure of Health Related Quality of Life for children aged 0 - 3 years. There is ongoing work to refine the descriptive system to ensure its international validity. The development of the EQ-TIPS aims to complement the adult and youth EQ-5D instruments allowing measurement and valuation of health across the lifespan. This proposal aims to test the psychometric properties of the EQ-TIPS-3L and EQ-TIPS-5L versions to inform any further changes. Caregivers of children, aged 0-3 years, will be recruited from Australia, Canada, Singapore and Germany. Children with and without health conditions will be included to ensure responses span the severity levels. Further consideration will be given to the inclusion of children across the age categories e.g., 0-6 months, 6-12 months and 12-36 months. Changes to the descriptive system will be informed by Classical Test Theory (Known groups validity, construct validity, test-retest reliability, responsiveness), Confirmatory Factor Analysis and Item Response Theory. | Janine Verstraete | Youth | 239920 | Ongoing | 2024 | 2026 |
| 1919-RA | Online Personal Utility Function (OPUF) estimation based on Adaptive Discrete Choice Analysis with sign and monotonicity constraints | This project aims to a) extend individually adaptive D-efficient DCEs with sign and monotonicity constraints to be able to elicit individualized preferences for the EQ-5D-5L, b) to estimate individual preferences for the EQ-5D-5L - with or without making use of the exact same sign and monotonicity constraints to increase statistical power in the estimations as well, and c) to provide internal validation of the preference estimates by asking respondents to reflect on summary graphs of their estimated preferences. The ultimate goal of this project is stand-alone individual-level preference estimation for the EQ-5D-5L; however, it should be emphasized that the same methods could also provide a valuable extension to the upcoming DCE with duration protocol, given that it would accomodate the estimation of heterogeneous time preferences and statistical identification of low-quality respondents in DCE valuation studies of larger instruments, such as the EQ-HWB. | Marcel Jonker | Valuation | 35854 | Ongoing | 2024 | 2025 |
| 1892-RA | Testing the EQ-HWB modifications in a mixed patient population: developing a protocol and generating evidence | Background: The EQ-Health and Wellbeing (EQ-HWB) is a newly developed generic instrument that assesses the impacts of health, social care and being an informal carer on quality of life. Evidence has emerged on the validity of the long and short versions of the instrument (EQ-HWB and EQ-HWB-S) in different populations and languages. Most of the 25 items can be understood but there is evidence that improvements can be made. This has led to proposals to modify items and response options. It is important to establish whether the modifications work as intended and are better and no worse than the current versions therefore the aim of this study is to assess the validity of the modifications. The study also aims to develop a protocol for testing modifications. As part of the study, digital versions of the EQ-HWB instruments will also be tested. Methods: Content validity studies aim to assess the comprehensiveness, relevance and comprehensibility of measures and are therefore suited to assessing whether the modifications are comprehensible. Concurrent think aloud interviews with retrospective probing will be undertaken to assess understanding of the modified items. Interviews will be undertaken by trained PhD students using a protocol for assessing modifications and topic guide that will be developed as part of the study. A mixed population of patients and social care users will be recruited from an online panel to take part in video conferencing interviews. The EQ-HWB instruments will be presented digitally in Qualtrics. In additions to comprehensibility of the modified items and response options, participants will also be asked to consider different digital versions to identify those that enhance engagement and understanding. Interviews will be video recorded and transcribed. Framework analysis will adapt an existing content validity framework. All interviews will be coded using the framework with dual coding for 20% of the interviews. A matrix with participant quotes and codes will be created. Thematic analysis will be used to summarise whether the modifications are better or no worse than the current versions of the EQ-HWB instruments. Results: This study will generate evidence on the impact of modifications for the English source version of the Experimental EQ-HWB-S and the EQ-HWB. It will also generate evidence on digital versions of the EQ-HWB-S and EQ-HWB. Finally, this study will generate a study protocol that can be adapted and replicated in other studies including those for other EQ measures. | Clara Mukuria | Descriptive Systems, EQ-HWB | 36516 | Ongoing | 2024 | 2025 |
| 1915-RA | Evaluating Changes to the EQ-HWB/EQ-HWB-S: Examining the Psychometric Properties Using Modern Test Theory of Merged Double-Barreled Items (Concentrating/Thinking Clearly and Walking Inside/Outside) in the EQ-HWB/EQ-HWB-S among Patients and Caregivers | Aim: The EQ Health and Wellbeing (EQ-HWB) and its short form (EQ-HWB-S) were developed as part of the "Extending the QALY" (E-QALY) project. In the current versions of the instruments, four single-domain items (Concentrating, Thinking Clearly, Walking Inside, and Walking Outside) from the initial E-QALY project were merged into two double-barreled items (Concentrating/Thinking Clearly and Moving Inside/Outside). However, measurement properties of these merged items have not been psychometrically evaluated to date. This study aimed to examine the measurement properties of EQ-HWB/EQ-HWB-S double-barreled items (Concentrating/Thinking Clearly and Moving Inside/Outside) and their "original" single-domain counterpart items among patients and caregivers using modern test theory. Methods: We will conduct a secondary analysis of data from a cross-sectional survey of 504 patient-caregiver dyads in the US, collected using an online panel between August 2022 and November 2022. Participants completed the latest version of the EQ-HWB, which included double-barreled items, and the four single-domain items from the E-QALY project. Separately, in the caregiver and care recipient samples, we will apply the following psychometric analyses to the double-barreled items and their single-domain counterparts: 1) confirmatory factor analysis; 2) item response theory; and 3) differential item functioning. Significance: This study provides psychometric evidence for the validity of the double-barreled items in the current EQ-HWB/EQ-HWB-S versions among patients and caregivers. These findings offer timely validation for the merged item format. The psychometric evidence supports advancing the EQ-HWB from experimental to beta status and informs decisions on item refinement across diverse groups. | Maja Kuharic | Descriptive Systems, EQ-HWB | 16544 | Ongoing | 2024 | 2025 |
| 1761-EO | Development and Launch of a EuroQol E-Learning Program | An aim of the EOWG is to address the educational needs of the EuroQol community including members, and end-users. The EuroQol Group puts in the public domain instruments for measuring HRQL, and it is our mandate to provide sufficient guidance and education on what these instruments are and to explain the science and methods in measuring and valuing health. We propose to develop and deliver an E-learning program that serves as an introductory course on EuroQol Group’s science and methods in measuring and valuing health. This E-learning educational program will initially target two main groups (but is open to others): i. end-users with an interest in the science and methods of these instruments, who may be involved in various applications including cost-effectiveness research, clinical effectiveness research, real-world evidence generation, population health assessment and as a PROM for routine outcome measurement within health systems. These include professionals and trainees in various fields including health economics, pharmaco-economics, public health, health policy and other related-fields. ii. researchers who are active in selected areas of our field and who aim to develop a comprehensive understanding of instruments for measuring and valuing health The E-learning program will be structured in such a way that it can be implemented again with less effort (eg by pairing pre-recorded lectures with live sessions) and can be expanded (e.g. with advanced modules or by developing other modules for a specific audience) Over the subsequent 18 months, our aims are: 1. To develop and implement five online modules that may be completed over a period of 15 weeks to 8 months (to be decided based on input from targeted groups). 2. To evaluate the performance of each module in terms of instruction, use of technology, cost, and market potential. This e-learning program will provide participants with the basic knowledge and training required to become active contributors toward EuroQol scientific aims. NOTE: Zhihao Yang, EOWG Chair, has made the Exec aware that this program was under development. The EOWG is supportive of this activity and the working group has contributed to the proposal's content. A formal letter of support can be provide upon request. | Benjamin Craig | Education and Outreach | 26621 | Ongoing | 2024 | 2026 |
| 1902-RA | Examining the internal structure of the EQ-HWB with a focus on positively and negatively framed items: analysis of three general population datasets | Our previous study (EQproject 127-2020RA) rigorously investigated the internal structure of the EQ-HWB using the psychometric study data (60+ items from which the final EQ-HWB items were drawn). More than half of the items selected for the EQ-HWB instrument have undergone revision, some substantively, and it is unknown whether the found structures would hold for the current version of the instrument. Furthermore, potential issues posed by the three positively worded items (all remaining items are negatively worded) have been noted by users of the experimental EQ-HWB. While we did not previously find positively/negatively worded items to pose a concerning methods effect, it is unknown whether using the 25 items divorced from the 60+ item bank changes item performance. Given the limitations of the previous study, we propose to: 1. confirm the structure(s) found for the EQ-HWB and EQ-HWB-S from project 127-2020RA using data on current version of the EQ-HWB, 2. determine the extent of the measurement effect posed by including both positive/negative items in the 25-item EQ-HWB, and 3. examine stability of structural findings across subgroups with a focus on comparisons across two languages (English and Chinese) and three countries (Ireland, Australia, China). Results are important for moving the EQ-HWB to approved status, especially providing measurement evidence on the three positively worded items (and whether they need revision). Furthermore, advancing non-preference based scores, especially for the long-version of the EQ-HWB for which preference-based scoring will not be developed, will support application of the instrument across a broad spectrum of settings. | You-Shan Feng | Descriptive Systems, EQ-HWB | 29320 | Ongoing | 2024 | 2025 |
| 1896-RA | Psychometric Performance of the EQ-HWB in Individual with Culturally and Linguistically Diverse Background | Following the global migration trend, the number of migrants is increasing in host countries while it is internationally recognised that the migration experience is a significant determinant of health and wellbeing. These diverse groups are commonly referred to as Culturally and Linguistically Diverse (CALD) populations, also known as ethnic minorities, racial groups, and other terms in international contexts. The EQ Health and Wellbeing (EQ-HWB) is a newly developed measure by the EuroQol group aimed at evaluating interventions in health, public health, and social care, including their impact on patients, social care users, and carers. However, further evidence of its psychometric performance in various populations is required. Using data collected from another project, this project aims to investigate the psychometric properties of the EQ-HWB-S in a large sample size of 857 Australian general population with culturally and linguistically diverse backgrounds (CALD) and 2,175 Australians without CALD. Among them, substantial sameple size with various physical and mental conditions were collected. Additionally we collected data on EQ-HWB 9 items, the EQ-5D-5L, the Recovering Quality of Life 10 items (ReQoL-10) and Kessler psychological distress 6 items. The psychometric properties of the EQ-HWB-S will be assessed in terms of distribution properties (ceiling and floor effects), known-groups and convergent validity among Australians with and without CALD. This proposal presents a unique opportunity for the EuroQol group to gain valuable insights into the psychometric properties of the newly developed EQ-HWB-S, particularly among CALD populations, which constitute a significant proportion of the population in many host countries. | Thao Thai | EQ-HWB | 6464 | Ongoing | 2024 | 2025 |
| 1869-SG | Evaluating the Sensitivity and Validity of EQ-5D-Y-5L in Measuring HRQoL Among Obese and Non-Obese US Children: Insights from the Little Rock Green Schoolyard Initiative | **Background:** The relevance of the EQ-5D-Y-5L may be limited for specific population groups due to potential shortcomings such as content validity, sensitivity, and its ability to discriminate between known groups, such as children with moderate/severe obesity or those with normal weight. This study aims to address these challenges by providing essential insights that could enhance the instrument's effectiveness and application. **Research Objectives:** * Examine how physical activity, sleep, and obesity status impact health-related quality of life (HRQoL), as measured by the EQ-5D-Y-5L, EQ-5D-Y-3L, and Kidscreen-27 instruments, and analyze these effects across different age groups. * Assess if changes in the obesity status of children from Fall 2024 to Spring 2025 correspond to changes in EQ-5D-Y-5L scores. * Evaluate whether the EQ-5D-Y-5L can effectively differentiate between children with moderate/severe obesity and those of normal weight. * Investigate the concurrent validity of the EQ-5D-Y-5L and Kidscreen-27 alongside established measures of physical activity and sleep, using both accelerometry and biometric data. **Study Population:** Data will be collected from 243 children in grades 3-5 attending four community schools in the Little Rock School District participating in a green schoolyard program. **Data Collection:** Measures will include the EQ-5D-Y-5L, EQ-5D-Y-3L, Kidscreen-27, physical activity, and sleep quality assessed through actigraphy. Additional physical activity data will be gathered through direct observations during recess and outside of school hours. **Project Context:** This study is part of a larger project funded by the National Institute on Minority Health and Health Disparities, NIH (Award Number R01MD018192), now in its second year. Biannual data collection for HRQoL, school climate, and other observations is planned for Fall 2024 and Spring 2025. The study has successfully recruited 243 child-parent dyads, with enrollment of up to 10 per grade per school. This sample size will enable us to successfully achieved stated research objectives, consistent with the most recent COSMIN guidelines. The children's ages range from 8 to 12 years. **Methods:** State-of-the-art econometric and psychometric methods will be utilized to address the study's objectives. **Expected Results:** This research program will produce several high-quality publications for leading health economics journals and provide innovative insights into the strengths and weaknesses of the EQ-5D-Y-5L, addressing existing research gaps and aligning with EuroQol's research priorities. | Corneliu Bolbocean | Youth | 4860 | Ongoing | 2024 | 2025 |
| 1891-RA | Content Validity of the Experimental and Modified EQ-HWB S versions in Argentina: Moving One Step Closer to Prime Time. | **Background:** The EQ-Health and Wellbeing (EQ-HWB) is an instrument developed to assess the impact of health, social care, and the role of informal caregiving on quality of life. It includes a comprehensive 25-item experimental version and a streamlined 9-item version (EQ-HWB-S), designed for easier valuation. Spearheaded by Prof. John Brazier and an international team, this tool was originally crafted with inputs from multiple countries, including Argentina. EuroQol 2024 strategic plan states the relevance of moving the EQ-HWB from an experimental to an approved status, pending further validations. The EQ Group has commissioned our research team (IECS), and also involving both the Version Management Committee (VMC) and the EQ-HWB Working Group (WG), to develop the Argentine Spanish mock-up versions of the experimental and modified EQ-HWB and EQ-HWB-S, which will be available by August 2024. This proposal focuses on the EQ-HWB-S “finetuning” as planned by the EQ-HWB WG. Our main objective is to assess the content validity—encompassing comprehensiveness, relevance, and comprehensibility—of both the official experimental self-complete version and the modified self-complete version of the Argentine Spanish EQ-HWB-S. Furthermore, we will compare the two versions to identify a preference for one over the other. **Methods:** The content validity of the EQ-HWB-S versions will be examined through qualitative interviews using the COREQ criteria. This includes standard cognitive interviews that combine think-aloud and retrospective probing techniques to understand participants' thought processes better. To ensure an unbiased perspective, half of the sample—diverse in age and gender—will initially be presented with the experimental version, while the other half will start with the modified version. A purposive sample of up to individuals from various demographics, ages, patient-carer-social care recipient status, and social strata will be recruited. The study will employ a semi-structured interview guide developed according to Euroqol guidelines, with cognitive interview methods including think-aloud and retrospective probing. The interviews will be analyzed using thematic analysis supported by qualitative analysis software, aiming to enhance the interpretability and applicability of the findings. **Expected Outcomes:** This study will provide evidence on the usability and content validity of the EQ-HWB-S versions in Argentine Spanish. The findings will help the EuroQol Group and EQ-HWB WG decide on the reasonableness of the proposed modifications, and support the advancement of the EQ-HWB-S towards broader application and nearer an approved status by EuroQol, thus enriching the instrument’s value and practical utility in diverse settings. | Federico Augustovski | Descriptive Systems, EQ-HWB | 24949 | Ongoing | 2024 | 2025 |
| 1914-RA | Evaluating the psychometric properties of bolt-ons in breast cancer patients | Background: The EQ-5D-5L is widely applied to measure of health-related quality of life (HRQoL) in cancer populations. However, it may miss HRQoL dimensions important for patients with cancer. In such cases, adding bolt-ons can improve the content validity and responsiveness of the instrument. No evidence is available regarding the selection and psychometric performance of different bolt-ons for the EQ-5D-5L in cancer patients. Objectives: To evaluate the psychometric properties and added value of four existing EQ-5D-5L bolt-on dimensions (bodily appearance, social relationships, sleep, and tiredness) and EQ-HWB items as bolt-ons to the EQ-5D-5L in breast cancer patients. Methods: A secondary analysis of an existing longitudinal dataset will be conducted (n=300, representative female breast cancer patient population in Indonesia, followed-up two weeks until two months). Outcome measures included the EQ-5D-5L, four EQ-5D-5L bolt-ons, EQ-HWB, FACT-G, and SWEMWBS. We will experiment with four EQ-5D-5L bolt-ons (bodily appearance, social relationships, sleep, and tiredness) and relevant EQ-HWB items as bolt-ons (e.g. exhausted, sleep). We will evaluate the following psychometric properties of the bolt-ons at the level of items as well as at the level of the instrument (EQ-5D-5L+bolt-ons): distributional characteristics (ceiling), discriminatory power (informativity) and convergent and divergent validity with the EQ-5D-5L and other outcome measures’ items, known-groups validity (comparisons between subgroups of respondents according to health- and wellbeing-related and clinical characteristics), structural validity (principal component analysis and confirmatory factor analysis), test-retest reliability and responsiveness. We will experiment with individual bolt-on items as well as the combinations of multiple bolt-on items. | Fredrick Dermawan Purba | Descriptive Systems | 24910 | Ongoing | 2024 | 2025 |
| 1897-RA | Assessment of the psychometric properties of EQ-HWB and EQ-HWB-S in patients with anxiety/depression in China | Individuals with anxiety or depression often experience decreased well-being. However, the performance of the EQ-HWB/S as a new measurement tool for this group is not well-studied. Hence, this study aims to evaluate the psychometric properties of the EQ-HWB/S in a clinical population of individuals with anxiety or depression in China. We will also test recent modifications to the EQ-HWB/S and compare their performance with the original items. The goal is to recruit 300 patients from two hospitals in China. We will explore various psychometric properties, including ceiling and floor effects, factorial structure, convergent validity, known-group validity, and reliability. This project intends to provide the EuroQol Group with insights into the performance of EQ-HWB/S among individuals suffering from mental health issues. Additionally, it seeks to expand the EuroQol Group's understanding by evaluating the strengths and weaknesses of the EQ-HWB/S's relevance and adequacy for this specific population and context. Furthermore, this will be the first study to assess the psychometric properties of both the original and modified versions of the EQ-HWB/S in China. The results could enhance the application and dissemination of this HRQoL and well-being tool, and potentially in other countries and regions. | Richard Xu | Descriptive Systems, EQ-HWB | 44840 | Ongoing | 2025 | 2026 |
| 1888-RA | Valuing EQ-5D-Y-5L in adolescents using DCE methods accounting for nonlinear time preferences: An extension to ongoing data collection as part of the QUOKKA program | The EuroQol Group is in the process of developing a valuation protocol for the EQ-5D-Y-5L. This will be informed by the current valuation protocol for the EQ-5D-Y, and other ongoing work exploring EQ-5D-Y-5L valuation such as the QUOKKA research program in Australia. Recent qualitative and quantitative evidence from QUOKKA suggests that adults and adolescents (aged 12-17) can value EQ-5D-Y-5L using DCE with duration approaches assuming preference linearity. QUOKKA has also embarked on a DCE study valuing the EQ-5D-Y-5L allowing for nonlinear time preferences. However, this is with adult respondents only, and adult respondents may value health states differently than adolescents. Therefore the primary aim of this proposal is to leverage and extend the ongoing nonlinear DCE collection to include adolescent samples. This will allow us to explore the feasibility of the approach in younger respondents and compare the characteristics of the value sets assuming nonlinear time preferences between adults and adolescents. This study will provide the first test of nonlinear DCE methods in adolescent samples. It will tie together two strands of important missing evidence in the generation of the EQ-5D-Y-5L protocol, given interest in both using nonlinear DCE approaches in standalone DCE valuation protocols, and incorporating adolescent preferences into value sets. There will be two arms of data collection. In one arm, respondents will be asked to imagine themselves. In another arm, respondents will be asked to imagine a 10-year-old when completing valuation tasks. Respondents will complete DCE valuation tasks with full health and models allowing discounting of time will be used to analyse data. Value sets from the adolescent sample will them be compared to value sets completed by an adult sample. As described earlier, the adult sample has already been funded and data collection is underway. This study will inform several strategic objectives of EuroQol related to strengthening methods/protocols used to produce value sets and to inform methods used to value the EQ-5D-Y-5L. This includes information about the impact of perspective and sample type. As well as whether understanding whether it is feasible to use nonlinear modelling methods in paediatric EQ-5D instrument valuation. Ultimately, this will inform the development of the EQ-5D-Y-5L valuation protocol. | Alice Yu | Valuation, Youth | 51565 | Ongoing | 2024 | 2025 |
| 1901-RA | Exploring psychometric properties and scoring approaches for the EQ-5D-5L psoriasis bolt-on: Supporting decisions on its IP status | The psoriasis bolt-on – a disease-specific EQ-5D-5L measure which includes two additional dimensions of skin irritation and self-confidence – is a leading candidate to become an approved instrument and the first EuroQol endorsed bolt-on. We propose this project to support the advancement of the psoriasis bolt-on by addressing some crucial research gaps including the instrument’s responsiveness, potential conceptual overlap with core EQ-5D dimensions, performance across a range of languages and information important for non-preference based scoring. Leveraging secondary data from clinical trials of psoriasis patients, we aim to: 1. examine the psychometric properties of the psoriasis bolt-on, with a focus on responsiveness, and comparison to the core EQ-5D-5L; 2. investigate the structure of the psoriasis bolt-on items a) in relationship to other generic and skin-specific health measures (to assess item performance and construct validity), as well as b) in relationship to the EQ-5D-5L (to examine potential conceptual overlap with EQ-5D core dimensions and assessing the psoriasis bolt-on measurement model); 3. explore non-preference based scoring based on findings of aim 2; and 4. examine potential differences in responsiveness, structure and item functioning across language and country subgroups. The results on psychometric properties and structure of the psoriasis bolt-on will provide support for the instrument advancing to approved status as well as provide the groundwork for future non-preference based scoring research. This project will also provide some of the first evidence of non-preference scoring of the psoriasis bolt-on, giving it a foundation for broader applications outside of health technology assessment and cost utility analyses. | You-Shan Feng | Descriptive Systems | 41840 | Ongoing | 2024 | 2026 |
| 1884-RA | A systematic literature review of the measurement properties of the EQ-5D-5L in conditions with itch to support the IP dossier of the ‘psoriasis bolt-ons’ | Background: A literature review of the measurement properties of the EQ-5D-3L in dermatology conducted in 2010 concluded that the measure was able to capture the disease burden in dermatology (Yang et al., 2015). Since that search was conducted, the EQ-5D-5L has become widely used and validated across a wide range of chronic dermatological conditions. Furthermore, a skin irritation bolt-on was developed for the EQ-5D-5L in psoriasis to improve the instrument’s sensitivity to capture skin symptoms, such as itching. This bolt-on may also be beneficial in further improving the EQ-5D-5L’s measurement in both dermatology and systemic conditions that cause itch (e.g. chronic kidney and liver diseases). A systematic literature review is required to focus on the measurement properties of the EQ-5D-5L in dermatology, as well as more broadly in systemic conditions with itch to identify areas where the skin irritation bolt-on may be a useful addition to the EQ-5D-5L. This project will provide a list of clear indications for the skin irritation bolt-on to support the DSWG’s IP dossier on bolt-ons. Objective: To conduct a systematic literature review of the measurement properties of the EQ-5D-5L in conditions with itch. Methods: A systematic literature search will be conducted in MEDLINE and Embase using Ovid. The search terms will be an adaptation of Yang et al.’s (2015), expanding the scope to conditions beyond dermatology and adding psychometric terms. Two reviewers will independently screen 10% of abstracts against inclusion and exclusion criteria to determine the eligibility of papers. Once a consensus is reached between the two reviewers the remaining papers will each be screened by a single reviewer. Preliminary scoping searches suggest that we will screen up to 200 abstracts. Full texts will be obtained for those abstracts meeting the inclusion criteria and will be screened again using the same process. Forward and back citation will be done on the texts that pass the full text screening. Data extracted from full texts passing screening will include details on the study population and design, psychometric features of the EQ-5D-5L considered, results and conclusions on ceiling, floor, construct/convergent/divergent validity, known-groups validity, content validity, test-retest reliability and responsiveness, amongst others. The quality, appropriateness, and risk of bias in the publications which undergo full data extraction will be assessed. | Katy Gallop | Descriptive Systems | 31432 | Ongoing | 2024 | 2025 |
| 1903-RA | Testing the development of a Dimension Specific Module using cognition – Extending the Deep Dive pilot study | The EQ-5D descriptive system includes dimensions that are measured using a single item for amenability to valuation. Such an approach to instrument design facilitates the generation of utility values but limits the possibility of collecting rich profile information about the patients’ status on each dimension. To address this gap the Descriptive Systems Working Group have proposed an extension to the core instrument that combines the benefits of both preference-accompanied and profile measures. This is a multi layered approach to measuring health and quality of life that generates Dimension Specific Modules (DSMs). The Executive Committee previously funded the Deep Dive Pilot study that includes an empirical exploration of developing a DSM in existing data that includes the EQ-5D-5L and other measures of HRQoL such as the SF-36 and PROMIS-29. The analysis of existing data included in the pilot study is informative in terms of exploring the development of DSMs. However it is limited due to the use of items from non EuroQol instruments as those tested within each DSM. Another strategic and methodological issue relates to which EQ-5D-5L dimension, or dimensions, should be used to provide further proof of concept for a DSM. An alternative approach would be to focus testing solely on experimental instruments and modifications in the EuroQol suite. For example, exploring DSMs using bolt-on constructs that meet the criteria for a DSM (i.e. a global construct with evidence of sub domains such as Cognition). The aim of this proposal is to leverage an ongoing cognition bolt on data collection, and to explore how a DSM could be constructed psychometrically when all items follow the EuroQol format, and also when all items are owned by EuroQol (EQ-5D-5L, EQ-5D-5L bolt on and sub domains and EQ-HWB items). The benefit of this is that the analysis will extend that done in the DSM pilot study as all items tested will be owned by EuroQol. Two cognition specific DSMs will be formed and tested across all analyses conducted. The analysis used will combine classical psychometrics, factor analysis and modern test theory (IRT) to explore the most appropriate approaches to develop a DSM. This will include assessing construct validity, dimensionality and item performance, linking items within a DSM, and associated score generation. The results from the psychometric methods will be triangulated to provide insight into the feasibility of developing DSMs within a multi-layered approach. | Brendan Mulhern | Descriptive Systems | 23480 | Ongoing | 2024 | 2025 |
| 1879-EO | Potential applications of the EQ Health and Wellbeing Short in health technology assessment (HTA) | Background: EQ-HWB-S is a new generic measure that has been developed to assess health and/or social care outcomes to support decision-making. The EQ-HWB-S was developed by an international team including research members from the National Institute of Health and Care Excellence (NICE) in England and Wales. Reimbursment agencies such as NICE and other industry stakeholders are interested in using the EQ-HWB-S but may have limited knowledge regarding it's content and potential uses. The goal of this workshop is to raise awareness of the measure. Method A workshop will be delivered in an international conference - ISPOR Europe. The workshop will cover the NICE reference case focusing on examples where alternative measures to EQ-5D have been used, development of the EQ-HWB-S, inclusion of the EQ-HWB in reimbursment guidelines and provide an industry perspective on the measure. An interactive audience discussion will be undertaken with participants. Audience polling will be employed throughout the workshop to generate evidence on the views of participants. The outcome of the workshop will summarised in terms of number of participants, and views noted in the session and the polling. Results The workshop will enable wider dissemination regarding the EQ-HWB-S and it will generate evidence regarding stakeholder views on the instrument. It is aniticipated that the workshop will also generate opportunities for collaboration on the EQ-HWB-S. | Clara Mukuria | Education and Outreach, EQ-HWB | 5136 | Ongoing | 2024 | 2024 |
| 1925-TVG | Research visit to University Technology Sydney, Macquarie University, Monash University and National University of Singapore to facilitate collaborative working on existing and planned research projects and build new networks. | I seek funding to facilitate a visit to Brendan Mulhern, Lidia Engel and Nan Lou (all EQ members) as well as Yuanyuan Gu and Kompal Sinha (collaborators on EQ grant) for 3 weeks in November 2024. These individual visits are bundled together in one trip to be economical on travel costs and to make best use of my time. The funding would be used to develop a grant application on recall; to achieve some much-needed face time to conduct analyses and discuss results pertaining to an existing EQ-funded project (IndiQOL), and to build new networks and learn about PROMs for use in long-term care settings. Approx. 2 weeks are dedicated to project/grant development work, and 1 week for networking and knowledge exchange. | Nils Gutacker | Descriptive Systems, Populations and Health Systems | 10850 | Ongoing | 2024 | 2024 |
| 1887-RA | Testing a modified version of the EQ-HWB-S among the general public in Australia | The EQ Health and Wellbeing (EQ-HWB) is a new measure developed by the EuroQol group for evaluating interventions in health, public health, and social care including the impact on patients, social care users, and carers. Since its development, emerging evidence has indicated areas for improvements in terms of comprehensibility and acceptability. As a result, modified versions of the EQ-HWB and its short version, the EQ-HWB-S, have been developed that require further testing. The aim of this study is to examine the performance of the modified EQ-HWB-S among the general public in Australia. This piggyback study will leverage data collected from an ongoing online survey involving 1,000 members of the general public in Australia. The primary aim of the survey was to derive a value set for a new informal carer-specific quality of life measure using discrete choice experiment with duration. The survey contained questions around respondents’ health and socio-demographic characteristics, informal care experience, happiness, the EQ-5D-5L and the EQ-HWB-S, where 500 respondents randomly completed the current EQ-HWB-S and 500 respondents the modified EQ-HWB-S. We aim to determine whether the modified version represents an improvement to the existing version by examining: acceptability (missing data), distribution properties (ceiling and floor effects), convergent validity and known-groups validity. The results will provide important information to EuroQol’s EQ-HWB Working Group, guiding the future direction of the EQ-HWB when moving from the experimental status to beta and approved version of the EQ-HWB-S. | Thao Thai | EQ-HWB | 7272 | Ongoing | 2024 | 2024 |
| 1885-RA | Development of Argentinean Spanish Mock-up Versions of the Experimental and Modified EQ-HWB and EQ-HWB-S Instruments | **Background:** The EQ-HWB is a comprehensive tool developed to assess the impact of health and social care, as well as the role of informal caregiving on quality of life. Developed by an international team led by Prof. John Brazier, this tool was initially created in collaboration with multiple countries including Argentina and is now transitioning from experimental to approved status, pending further validation. **Objective:** The research proposal focuses on developing Argentinean Spanish mock-up versions of the EQ-Health and Wellbeing (EQ-HWB) and its shorter form, EQ-HWB-S, both in their experimental and modified versions. **Methods:** The project will be executed through a series of methodical steps. Initially, a local researcher will use a previously translated 60-item Spanish version as a foundation to create the initial drafts of the EQ-HWB instruments. These drafts will then be adjusted based on the modifications identified in the English experimental versions. After the initial drafting, the drafts will be refined further through a collaborative review process. This involves another local researcher and a VMC reviewer fluent in Spanish. Their insights will be integrated during an online consensus meeting aimed at finalizing the drafts. Following this, the drafts will undergo a back translation process conducted by a qualified translator. This translator, fluent in both Spanish and English, will translate the Spanish versions back to English to ensure the translations maintain fidelity to the original meanings. Discrepancies identified between the back-translated English texts and the original drafts will lead to further adjustments. To assess the clarity and appropriateness of the translations, cognitive interviews will be conducted with a small sample of participants. This step is vital as it targets items that are known to be problematic or have undergone significant modifications. The insights and recommendations gathered from the cognitive debriefing will inform the final revisions to the drafts, leading to the production of the third consensus versions of the EQ-HWB instruments. These final versions will ensure accuracy and cultural relevance, making them suitable for use in the Argentinean context. | María Belizán | EQ-HWB | 10447 | Ongoing | 2024 | 2024 |
| 1859-TVG | Travel Grant to visit the University of Sheffield for Qualitative analysis of EQ-TIPS qualitative data on content validity. | The EuroQol Toddler and Infant (EQ-TIPS) measure of Health Related Quality of Life is being further developed in a multi-national large scale study. Colleagues from the University of Sheffield have provided expert input from learnings on the EQ-HWB and other HRQoL instruments into the proposal for the Content Validity Testing of the EQ-TIPS. The proposed visit to Sheffield aims to allow in person data analysis from the eight participating countries and deliberation for decision making on retention, amendement or pruning of EQ-TIPS items. This visit will further allow the opportunity to present the ongoing EQ-TIPS work to the broader Sheffield team. If an abstract relating to the EQ-TIPS is accepted to ISPOR, Barcelona the trip will be extended to attent this conference. | Janine Verstraete | Youth, Education and Outreach | 8867 | Ongoing | 2024 | 2024 |
| 1854-EO | Travel support for the SEVQoL PhD student to the Priorities 2024 conference | SEVQoL (SEVerity and Quality of Life, EQ no. 1340-RA) investigates whether people show a preference for prioritising the 'worse off' in hypothetical healthcare allocation scenarios, using individually calibrated EQ-5D-5L health state values. An abstract for the project's first article, "A Preference for the Better Off? A Discrete Choice Experiment Using Individually Calibrated EQ-5D-5L Health State Values", was accepted as a poster presentation for the [Priorities 2024](https://priorities2024.com/) conference in Bangkok on May 7.-11. hosted by The International Society for Priorities in Health. As there is no funding for the project beyond salaries for the PhD student, we apply for additional funding to cover 50% of the conference fee, travel and accommodation for Marius Torjusen, who is the first author and PhD student on the project. | Kim Rand | Descriptive Systems, Valuation, Populations and Health Systems | 900 | Ongoing | 2024 | 2024 |
| 1709-RA | Can pictorial enhancements extend the self-report age of the EQ-5D-Y? An exploratory study in 4 to 7-year-olds | Introduction: Self-report is the preferred method for measuring children’s health-related quality of life (HRQoL) outcomes. However, children younger than eight years may not always be able to self-report their HRQoL using measures presented in standard text formats, as reading and completing a written questionnaire can be challenging, especially for young children and those with severe health conditions. Consequently, some HRQoL measures, including the EQ-5D-Y, recommend proxy completion for children younger than eight years. However, research is lacking on whether pictorially augmented measures can enhance self-reporting alongside standard text. For the EQ-5D-Y, the most widely used preference-based measure in children, there has been no research into using a pictorial version for children aged 4-7 years to explore the possibility of extending the self-reported age range and supplementing reporting using standard text. Aims: This exploratory study will investigate whether a range of pictorial enhancements at dimension and response scale levels can support younger children's understanding and completion of the EQ-5D-Y-3L and EQ-5D-Y-5L. The equivalence of the pictorially enhanced and text-only versions of the EQ-5D-Y-3L and EQ-5D-Y-5L will be qualitatively assessed. This exploratory work will test several pictorial formats for all five dimensions of the EQ-5D-Y-3L and EQ-5D-Y-5L (‘mobility (walking about)’, ‘looking after myself’, ‘doing usual activities’, ‘having pain or discomfort’ and ‘feeling worried, sad and unhappy’) for children ages 4-7 years. Additionally, the research will investigate any disparities in the acceptability and feasibility of the pictorial enhancements between the 3L and 5L versions of the EQ-5D-Y. Methods: This study will focus on the descriptive system of the EQ-5D-Y-3L and EQ-5D-Y-5L and will consist of two stages. (1) Design a series of candidate test images for the five EQ-5D-Y-3L and 5L dimensions, including separate test images representing each response level of the dimensions, and (2) conduct face-to-face semi structured interviews and expert panel discussions to explore the acceptability and feasibility of using the pictorial formats of the EQ-5D-Y-3L and Y5L instruments on a sample of healthy children and paediatric patients. All interviews, face-to-face semi structured interviews and expert panel discussions will be audio-recorded, transcribed verbatim, and analysed using a thematic analysis approach. | Dr Christine Mpundu-Kaambwa | Descriptive Systems, Youth | 112396 | Ongoing | 2024 | 2025 |
| 1851-TVG | Travel scholarship request to attend the EuHEA conference 2024 in Vienna, Austria - Jan Faller | This travel grant application sought funding support for an accepted abstract as part of my EuroQol funded PhD study at the 2024 European Health Economics Association Conference to be held in Vienna, Austria from 1-3 July. The accepted presentation is titled: How well do generic preference-based measures perform in informal carers: a psychometric study in Australia. Findings from the research were presented and questions were fielded after with further discussions among the attendees. | Jan Faller | Descriptive Systems | 2310 | Ongoing | 2024 | 2024 |
| 1830-RA | Response heterogeneities in EQ-VAS within identical EQ-5D-5L profiles: Investigating potential underestimation of the education-health gradient | The EQ-5D is increasingly being used in studies of health inequalities, providing further evidence of a social gradient in health. Studies have shown consistent positive associations between level of educational attainment and HRQoL. The EQ-5D provides two different measures of how population sub-groups differ in how they value their health; either based on their EQ-5D-5L description, or by their direct valuation (EQ-VAS). However, the steepness in the social gradients in HRQoL differs across these two measures, with a recent Norwegian study showing the gradient is twice as steep when measured in terms of EQ-VAS scores, as compared to EQ-5D-5L index values. More knowledge is needed to explain why the two measures suggest very different degrees of health inequalities. Based on two large unique data sets (Tromsø Study, N= 21,083; MIC study, N= 8,022) we identify the most prevalent EQ-5D-5L profiles, and examine response heterogeneities in EQ-VAS scores within each of nine EQ-profile groups, as explained by respondents’ level of educational attainment, controlling for sex and age. We further explore alternative regression models; with interaction terms (educationsex) and other relevant confounders, e.g. marital status, having a chronic condition. The results will provide new insights on population norms hetereogenities, i.e. how respondents with an identitical EQ-5D-5L profile assign different EQ VAS scores across sex and age sub groups. In a supplementary analyses, we will conversely identify the most frequenly rated EQ-VAS scores, and examine response heterogeneity in EQ-5D-5L index values and profiles. By providing new insight to explain the divergent gradients when using EQ-5D-5L value sets vs. EQ VAS, this project will stimulate the interest in using EQ-5D for analysing health inequalities._ | Jan Abel Olsen | Populations and Health Systems | 29940 | Ongoing | 2024 | 2025 |
| 1798-RA | Impact of mode of administration on responses and measurement properties of the EQ-5D-Y-3L/-5L and other pediatric preference weight measures: a systematic review | Background: Different modes of administration (MoAs) have been used to administer the EQ-5D-Y-3L/-5L and other pediatric preference weight measures(PWMs), including self-administered questionnaire (paper and pencil and digital survey) and interviewer administration (face to face, telephone, and Computer-Assissted Personal Interview(CAPI). However, the impact of using different MoAs on health domain responses and health state utility value in children and adolescents is unclear. Aims: To compare and assess the level of agreement in measurement properties between different MoAs of the EQ-5D-Y-3L/-5L and other pediatric PWMs; and 2) to examine how different MoAs affect response distributions on health domains and health state utility values. Methods: A systematic search of eight electronic bibliographic databases will be conducted. Studies that compare scores or response distributions, measurement properties, and/or impact on health state values across different MoAs for the EQ-5D-Y-3L/-5L or other pediatric PWMs will be eligible for inclusion. A comprehensive search strategy will be developed with input from a medical librarian. All titles/abstracts and full texts will be reviewed by two reviewers independently. Any disagreement will be discussed and resolved through group discussion. Data will be extracted in duplicate using a form developed and tested by the research team. Information on study characteristics, scores or response distributions, feasibility, measurement properties (e.g. reliability, validity, and responsiveness), and/or impact on health state values between different MoAs of EQ-5D-Y-3L/-5L and pediatric PWMs will be extracted. The study protocol will be registered with the International Prospective Register of Systematic Reviews (PROSPERO) and reporting will follow PRISMA guidelines. | Abraham Gebregziabiher | Youth | 26888 | Ongoing | 2024 | 2025 |
| 1846-EO | Travel Grant Application for the 2024 ISPOR Meeting in Atlanta GA, USA-Yared Belete Belay | I participated in the ISPOR 2024 meeting held May 5-8 in Atlanta, GA, USA. I presented two posters from projects funded by The EuroQol Research Foundation. Poster 1: "A Qualitative Study on Respondents’ Interpretation of the EQ-Vas in Ethiopia," findings from EQ project 327-RA. Poster 2: "Health-Related Quality of Life and Utility Values Among Patients with Anxiety and/or Depression in a Low-Income Tertiary Care Setting: A Cross-Sectional Analysis," from EQ project 229-RA. I received valuable feedback on my abstracts from meeting participants. This conference provided an opportunity to share insights on the utilisation of EQ-5D-5L in low-income settings and to receive constructive feedback on my work. Additionally, as an early-career researcher and PhD student, attending this conference allowed me to learn from experts in the field of outcome research. It also facilitated networking with fellow researchers, practitioners, and students, enriching my academic and research journey. I attended podium presentations, discussions, and preliminary sessions, further gaining knowledge and experience. | Yared Belete Belay | Dissemination, OA fee, Others | 2381 | Ongoing | 2024 | 2024 |
| 1812-PHD | Assessing the health-related quality of life of adolescents in Ethiopia: Mixed method study (quantitative and qualitative) | As for the adult population, measuring the health status of children and adolescents is vital for describing and monitoring the health of a population, for public health research, and evaluation of treatments. In Ethiopia, where 24% of the population is aged 10-18 years, it is particularly important to have information about the health status of adolescents. Therefore, the aim of this PhD project is increase knowledge on measuring health among adolescents aged 12-17 years in Ethiopia using the EQ-5D-Y-3L and EQ-5D-Y-5L instruments. Mixed methods will be employed. First, a systematic scoping review will be undertaken to identify: the approaches (modes of administration), instruments used, and factors associated with child and adolescent HRQoL in Sub-Saharan Africa. Then, extensive analysis of the (n=5000) adolescents HRQoL data will be undertaken. Other than the common income and employment status measures of socio-economic status (SES), a new method of adolescents SES classification adopted from Ghanaian researchers will be tested in Ethiopia from the collected data set. Third, adolescent population norms will be presented using both the Y-3L and Y-5L instruments and the performance of the instruments will be compared. Fourth, factors associated with the HRQoL of adolescents, as measured using Y-3L and Y-5L instruments, will be assessed. Finally, a qualitative study exploring the content validity and acceptability of EQ-5D-Y-3L and EQ-5D-Y-5L among children and adolescents with Type 1 Diabetes will be conducted pending outcome of a current grant application. | Sarah Derrett | Populations and Health Systems, Youth | 99992 | Ongoing | 2024 | 2028 |
| 1792-SG | Applying Large Language Models to Identify EQ-5D Bolt-ons Based on Patient Text Data | _Background & Aim:_ Bolt-ons can expand the evaluative space of the EQ-5D in situations where it’s coverage is incomplete. EQ-5D + bolt-ons may be useful in diverse contexts, including (economic) evaluations of interventions and as patient reported outcome measures (PROMs) in e.g. routine clinical practice or population health surveys. Currently, there are no methodological standards/protocols for the identification and development of bolt-ons, but methods usually involve factor analytic methods, classical test theory methods, qualitative methods, and regression methods. Moreover, a valuation of the extended instrument is required to generate utilities, which are essential in economic evaluations. On the other hand, valuation of the extended instrument may not be a requirement in clinical practice settings (i.e., for clinical decision making and use as routine PROMs), offering some flexibility in how bolt-ons may be identified and implemented. This is also a much less explored setting of application of EQ-5D + bolt-ons. In clinical practice settings, artificial intelligence (AI) may offer new opportunities to systematically identify potential bolt-ons from large amounts of patient reported free-text data. Patient-reported text data can provide valuable insights into patient satisfaction and quality of life. However, it is not routinely collected due to time/practical challenges with analyzing it using qualitative methods in large datasets. If AI could be successfully deployed to identify potential bolt-ons to the EQ-5D based on free-text data, the impact may be significant as it would enable researchers and clinicians to gain more insights from this informative, patient-focused, and underutilized data source. This project aims to explore the application of so-called large language models (LLMs) to identify potential EQ-5D-5L bolt-ons for use in clinical settings (i.e., individualized clinical decision-making or as/alongside PROMs). As a ‘proof of concept study’, we focus on approximately 1700 patients with celiac disease (CD) who provided narrative responses about their quality of life before and after treatment, in addition to completing the EQ-5D-5L. Patients with CD are a population for whom the EQ-5D may fall short in assessing important QoL aspects related to the disease’s impact and treatment (e.g. ‘relationships/isolation’, ‘fatigue/energy’, ‘cognition’, and other mental and social health-related factors [1–4]). _Proposed Methods:_ This research will utilize instruction-tuned LLMs to extract QoL aspects from patient text data related to areas insufficiently covered by the EQ-5D. Specifically, prompt engineering (i.e., the process of iteratively developing input prompts that achieve the desired outputs, where a ‘prompt’ is a textual input to the LLM comprising instructions and contextual information/data) will be used to systematically analyze patients’ free text data to identify potential bolt-on dimensions. This methodology will be compared to more traditional qualitative methods analyzing textual data (i.e., thematic/framework analysis). In addition, the following secondary aims will be explored to understand the feasibility of utilizing LLMs for purposes beyond bolt-on identification: - Generating quantitative estimates (i.e., binary/ordinal scores) for the LLM-identified QoL dimension, facilitating subsequent quantitative analyses and interpretations. - Develop potential questions/items for the identified bolt-on dimensions, taking into account questionnaire design criteria and disease-specific factors. _Relevance to EuroQol Group:_ By funding this research, the EQ group will pioneer an innovative approach to the identification of QoL constructs from patient data that can be applied to free text responses and inform instrument development, including bolt ons; gain insights into the methodology's capabilities and limitations; and contribute to EuroQol guideline/criteria development for identifying and evaluating EQ-5D bolt-ons. | M. Elske van den Akker-van Marle | Descriptive Systems, Populations and Health Systems | 41915 | Ongoing | 2024 | 2025 |
| 1786-RA | An empirical analysis of the EQ-5D Anxiety/Depression dimension : investigating the Humpty Dumpty phenomenon using general population data | The EQ-5D descriptive classification has remained largely unchanged since its inception in 1987, however the use of information based on health status (notably for quantifying health outcomes) has evolved over that period. EQ-5D now faces challenges and perceived limits to its practical value. EQ-5D lacks clear definitions and a formal conceptual framework with which to resist such external pressures. The Deep Dive initiative offers a different developmental model in which rather than creating an ad hoc collection of additional supplementary dimensions (bolt-ons) we seek ways of incorporating items of relevance into lower-level elements of the descriptive system. This study is based on EQ-5D-3L data for some 70,000 individuals surveyed as part of the annual Health Survey for England. Concurrent data for standardised measures of mental wellbeing and psychological distress (WEMBS and GHQ-12) form part of the same dataset. Although the Anxiety/Depression dimension of EQ-5D is ambiguous, it has been shown to perform satisfactorily. The proposed study takes this single dimension and analyses its association with contextual variables present in the HSE dataset to (a) create an empirically led definition of the AD dimension and (b) to derive an algorithm based on GHQ-12 and WEMBS (scores and items) to predict AD responses. | Paul Kind | Descriptive Systems | 29280 | Ongoing | 2024 | 2024 |
| 1781-RA | Establishing population norms and assessing the usefulness of EQ-5D in studying health inequalities: a cross-sectional and longitudinal study based on Stockholm public health cohort | **Background:** While EQ-5D is well known for its use in economic appraisals, it is also useful in measuring population health and in clinical practices. EQ-5D is widely collected in the Swedish national quality registries (NQR). However, only about 50% reported to have used the EQ-5D data for any kind of follow-up or decision-making. One of the challenges is the lack of population norms based on EQ-5D. Presenting a set of population norms that the EQ-5D data for the specific patient populations in the NQRs can be compared to would make it possible to estimate health gaps in the population. Thus, it has great potential to increase the use of the routinely collected data in NQRs and the usefulness of EQ-5D to patients and health care professionals that have contributed with the data and in healthcare priority settings. **Aim:** to estimate population norms, health related quality of life trajectories overtime and investigate the usefulness of EQ-5D in studying health inequalities. **Methods:** The data for this study are based on the Stockholm Public Health Cohort (SPHC), which is a combination of repeated cross-sectional and longitudinal data collected in about every four years since 2002, will be used to provide EQ-5D population norms and study health inequalities. The SPHC, with up to five measurements over 20 years, has self-reported data including EQ-5D-3L and is also linked with regional and national health and population registers using participants' national registration numbers. Proportion of problems in each dimension, average index scores and EQ VAS scores will be presented for the total population and for subgroups based on age, sex, income, education, and occupation. Multivariable regressions and concentration index will be used to study health inequalities. Group based trajectory models will be employed to identify different trajectories of health-related quality of life over the 20-year period. | Mihretab Gebreslassie | Populations and Health Systems | 41868 | Ongoing | 2024 | 2025 |
| 1762-RA | The impact of medical diagnosis on German EQ-5D values using the DCE with duration protocol | In Germany, the EQ-5D-5L and its national value set are not fully accepted for decision-making in health care regarding reimbursement until now. However, representatives of the Institute for Quality and Efficiency in Health Care (IQWiG) and the Federal Joint Committee (G-BA) expressed their interest in the German EQ-5D-5L value set, but they would like to get more insight about the impact of the general population as reference group instead of a patient sample. Thus, the aim of the proposed research project is to investigate the differences between patients and the general population health state preferences and the reasons behind. The DCE with duration protocol will be used to elicit EQ-5D-5L health state preferences in a general population sample and three patient samples with a chronic disease of the lung in Germany. EQ-5D-5L value sets will be estimated for each study group and the degree of similarity/differences between the value sets will be assessed (Step 1). Moreover, the DCE valuation data from the general population and the three patient samples will be pooled and a single statistical model in which observed differences in health state valuations are disentangled into differences due to respondents’ age, self-reported health problems, and patient status will be fitted (Step 2). Based on the results of the proposed research project, it will be decided if there is enough evidence that the EQ-5D-5L value set can be used for health decision-making in the selected disease groups in Germany. | Kristina Ludwig | Valuation | 161252 | Ongoing | 2024 | 2025 |
| 1816-RA | Validity of breathing and cognition bolt-ons for the EQ-5D instrument in non-hospitalized patients after COVID-19 | The EQ-5D is a widely used instrument for measuring HRQoL, but it lacks dedicated dimensions for respiratory and cognitive symptoms. In acute COVID-19 and long-COVID, breathing problems and cognitive complaints are common. In this project, we shall conduct a secondary analysis of data from a Norwegian follow-up study of community-based non-hospitalized patients who had COVID-19 in 2020 (n=458), and were followed for about 30 months. The respiratory bolt-on was used alongside the mMRC and the Dyspnea-12 in the 4th round of the study, at about 30 months (n=220). The construct validity of the two bolt-ons will be determined by cross-sectional comparison with items and domains of other instruments used concurrently (mMRC, Dyspnea-12, DSQ-SF) in November/December 2022, about 30 months after acute COVID-19. In addition, we shall correlate the bolt-ons with pulmonary function tests and comprehensive tablet based cognitive tests using the CANTAB software about 1 year earlier. We shall assess floor and ceiling effects, and the contribution of the bolt-ons to the five existing EQ-5D-5L dimensions in explaining variability of the EQ-VAS. The two bolt-ons to be evaluated in the proposed project may enhance the EQ-5D's utility in respiratory and cognitive research and clinical practice. | Knut Stavem | Descriptive Systems | 23320 | Ongoing | 2024 | 2025 |
| 1735-RA | Exploring the content validity and acceptability of the EQ-5D-Y-3L and the EQ-5D-Y-5L among children and adolescents with Type 1 diabetes in Ethiopia A qualitative-study | Introduction: The EQ-5D-Y is one of the most commonly used generic instruments to assess health-related quality of life (HRQoL) among children and adolescents. Although generic instruments have shown to be applicable across populations and possess comparability across studies, they may be less relevant for specific population groups. Concerns may arise in relation to content validity (comprehensiveness, relevance, and comprehensibility), and sensitivity especially when compared with condition-specific measures. The Young Population Working Group (YPWG) has expressed interest in receiving proposals regarding content validity of the EQ-5D-Y. This study will provide valuable information regarding the acceptability and validity of the EQ-5D-Y-3L and the EQ-5D-Y-5L in an important child/youth patient population. Objectives: To assess the content validity and acceptability of the EQ-5D-Y-3L and the EQ-5D-Y-5L among children and adolescents with Type 1 Diabetes Mellitus (T1DM) in Ethiopia. Methods: A qualitative study will assess the content validity and acceptability of the Amharic version EQ-5D-Y-3L and EQ-5D-Y-5L among children and adolescents with T1DM in Ethiopia. A purposively selected sample of approximately 30 participants aged 8-17 years and five physicians will be recruited. The content validity of the EQ-5D-Y will be assessed in two steps. The first step is the concept elicitation interview exploring the impact of T1DM on HRQoL using open-ended questions. In the second step, participants will be asked to complete the EQ-5D-Y-3L and EQ-5D-Y-5L, with follow up questions focusing on the content validity of the instrument. All interviews will be audio recorded, translated, and transcribed for analysis. A qualitative thematic analysis will be used. | Goitom Molalign | Youth | 24775 | Ongoing | 2024 | 2025 |
| 1826-RA | EQ-HWB Development and support (extension) | The application is to fund EQ-HWB WG chair activities to support the move to beta status including: - Leading WG on strategic and scientific direction (RFPs, reviews of proposals, considerations of requirements for status change, engagement with other WGs, VMC, Board and Executive). This includes engaging with collaborators and emerging findings to identify key concerns and research gaps. - Leading WG on engagement with external partners including the SIG, HTA agencies, policymakers and for profit and not-for-profit stakeholders. This includes attendance to key conferences/workshops and presentations to key stakeholders. This is an extension of a previous project. | Clara Mukuria | EQ-HWB | 38160 | Ongoing | 2024 | 2025 |
| 1741-RA | Unravelling the puzzle of low TTO values for establishing a trustworthy EQ-5D-5L value set for Singapore | This project aims to develop an EQ-5D-5L value set for Singapore using a 'lite' EQVT protocol validated in a Uganda 5L valuation study. A total of 500 members of the general public will be recruited and interviewed by trained interviewers using the EQVT tool. A total of 91 (86 EQVT states plus 455555, 54555, 55455, 55545, 55554) states will be valued using cTTO, with each participant valuing a block of 20 states. The cTTO data will be modeled to estimate an 5L value set for use in Singapore, if the cTTO data is different from the cTTO data collected in a previous 5L valuation study conducted in Singapore using the standard EQ-VT protocol. | Nan Luo | Valuation | 86500 | Ongoing | 2024 | 2024 |
| 1785-RA | Testing the skin irritation, self-confidence, social relationships, social participation and social connectedness bolt-on items for the EQ-5D-5L in German patients with chronic skin diseases associated with shame | Psoriasis (PSO) and atopic dermatitis (AD) are highly prevalent chronic skin diseases, which can affect physical and mental aspects of health-related quality of life (HRQoL). A powerful emotion linked to both mental, social and emotional functioning is shame. Shame plays a central role not only in psychological and psychosomatic disorders, but also in a variety of physical diseases, and particularly affects persons with AD and PSO, which often appear on visible body areas like head and arms. This German cross-sectional study investigates the psychometric properties of the EQ-5D-5L and five selected bolt-on dimensions in 300 persons with PSO and AD. Data is collected via an online survey using several generic, symptom- and disease-specific patient-reported outcome measures (PROMs, e.g., EQ-5D-5L with skin irritation, self-confidence, social relationships, social participation and social connectedness bolt-on dimensions, DLQI, SHAME, SSS-24, PHQ-4). For a subsample of each n=75 patients with PSO or AD, face-to-face interviews are conducted to assess the presence of a body dysmorphic disorder or a social anxiety disorder as prototypical ‘shame disorders’. We will analyse the psychometric properties of the EQ-5D-5L + bolt-on dimensions (e.g., distribution properties, construct validity and known-groups validity) and compare them with those of disease- and symptom-specific PROMs. Additionally, we aim to explore the latent structure of the EQ-5D-5L and bolt-on dimensions, and to reveal their contributions that the dimensions have for explaining variations in HRQoL (e.g., with the EQ VAS as the dependent variable). | Ines Buchholz | Descriptive Systems | 47660 | Ongoing | 2024 | 2026 |
| 1823-RA | Developing an interviewer administered version of O-PUF (Online Personal Utility Function): a first step involving co-design with members of the public. | The Online Personal Utility Functions approach (O-PUF) has gained prominence in health state valuation studies, yet concerns regarding data quality, particularly among older respondents, have emerged. To address these challenges, we propose the creation of an Interviewer-guided O-PUF/CAPI (Computer-Assisted Personal Interview) approach, integrating standardised interviewer training, scripts, prompts, feedback and quality control processes. This approach aims to improve respondent understanding and data quality, particularly for complex instruments like EQ-HWB. Public Involvement (PI) is pivotal to the success of this initiative. We acknowledge that PI members offer invaluable insights into user experiences and ethical considerations. Collaboration with PI members, spanning diverse age groups, will ensure that the development of the interviewer-guided O-PUF/CAPI is well-informed and aligns with the requirements of both researchers and respondents. This seed project was the initial phase of this endeavour, beginning with a commitment to integrate PI members fully into the process. To enable meaningful PI within the overall project it is imperative to provide opportunities for training and involve PI members from early planning stages. This seed project recruited and provided extensive and appropriate training to two members of the public who were then able to work with the project researchers to co-produce a protocol for the larger project. The seed project culminated in a submission of a comprehensive research protocol for developing an interviewer script, feedback mechanisms, and quality control procedures for O-PUF, co-designed with PI members. | Tessa Peasgood | Valuation | 11812 | Ongoing | 2024 | 2024 |
| 1811-RA | EQ-5D-5L and EQ-HWB: Assessing Distinctiveness of Frequency vs. Severity Response Scales in Pain and Discomfort & Instruments Convergent Validity in the Context of Self-Reported Chronic Conditions | This study provided the first comprehensive psychometric evaluation of frequency versus severity response scales in pain and discomfort assessment using the EQ-HWB instrument. Analysis of data from 1,008 U.S. participants employed multiple complementary methods to examine scale properties and performance. Frequency scales demonstrated superior informativity (Pain: H'=2.28 vs H'=2.06; Discomfort: H'=2.18 vs H'=2.00) and better measurement across trait levels, while severity scales showed higher discrimination at upper trait levels (a=6.23 for pain severity). DIF analysis revealed significant scale differences for pain (ΔR²=0.24) but not discomfort (ΔR²=0.001), suggesting different measurement approaches may be needed for these constructs. Health condition-specific analyses showed distinct patterns of scale performance, with frequency scales being particularly informative for conditions characterized by recurring symptoms (e.g., immunologic conditions OR=3.21, 95% CI: 1.97-5.24). These findings support using frequency scales in shorter instruments like EQ-HWB-S, while suggesting both scale types provide valuable information in comprehensive assessment. The results offer important empirical evidence for response scale selection in health measurement instrument development and highlight opportunities for condition-specific measurement optimization. | Maja Kuharic | EQ-HWB | 22162 | Ongoing | 2024 | 2024 |
| 1783-RA | Paving the way towards a (potential) pluralistic EQ-5D-Y-5L valuation protocol: mapping out the questions and (lack of) answers | **Background**: The EQ-5D-Y-3L valuation protocol and related methods research has spurred discussions on child health valuation, raising key questions about the source of preferences, perspective, age of child, dimension importance, anchoring on the QALY scale, and length of the value scale. Extensive empirical research funded by EuroQol explored these questions but does not provide universally applicable answers to the question of which methods are best. This is important as we prepare for valuation of the Y-5L. Stakeholder engagement and consensus-building activities to date have highlighted the challenges of standardizing methods globally: the social value judgements and priority setting principles of local decision makers may vary – suggesting a pluralistic approach to the valuation protocol for the Y-5L may be needed. However, several challenges remain, e.g. identification and categorization of the many potential approaches and accommodating jurisdictions where stakeholders are unable or unwilling to provide answers to normative questions. With this project, the youth valuation squad aims to explore if pluralistic valuation protocols may be feasible and desirable. **Objective:** • Analyze current stakeholder engagement materials and discussions relating to valuation of child HRQoL, identifying unresolved methodological challenges. • Formulate these challenges as distinct normative questions for stakeholder input and connect them to normative principles. • Merge these questions into a decision tree for a pluralistic valuation framework. • Assess available evidence for each branch, proposing feasible methodologies or highlighting research gaps. • Solicit feedback on the decision tree and assess its implications with EuroQol Exec and other stakeholders. • Establish a research agenda for branches lacking methodology guidance. **Methods:** The methodology includes a review of materials and papers to identify unresolved child health valuation challenges. These questions are structured into a decision tree to support and structure a pluralistic approach, with evidence assessed for each branch. Stakeholder input and interviews will validate the provisional decision tree, shaping a research agenda for potential pluralistic valuation. | Stefan Lipman | Valuation, Youth | 35740 | Ongoing | 2024 | 2025 |
| 1753-PHD | Exploring response shift in EQ-5D and its implications for healthcare decision making in knee arthroplasty | Like many healthcare interventions, knee arthroplasty (KA) (knee surgery) is a leading example of the increasing use of patient-reported outcome measures (PROMs) in improving the quality of routine healthcare. This surgery has been on the increase in Canada, resulting in increasing healthcare costs. The assumption when decisions such as the effectiveness of interventions are made based on the comparison of PROMs scores at two or more time points is that patients interpret the construct of interest the same way over time (longitudinal invariance). However, studies have shown that this assumption could be wrong, as patients could change their internal standards (recalibration), the conceptualization of the target construct (reconceptualization) and even shift priorities after receiving treatment(s) (reprioritization). This phenomenon, known as response shift (RS), is an effect that occurs when an observed change, such as a change in PROM scores, cannot be wholly explained by a target change, i.e., change in the construct of interest. Making healthcare decisions without accounting for response shift can, therefore, result in erroneous or suboptimal healthcare decisions. Response shift is sparsely explored for KA patients, especially using administrative data, which now inform many healthcare decisions. Importantly the “then test” used in studies conducted so far could be subject to recall bias and cannot be implemented with the existing administrative data without modification and additional investment in data collection. Finally, the studies included a limited number of patients, raising concerns about generalizability. To address these concerns along with the need to improve the quality of KA care and the methodological advances in statistical methods for studying RS, we propose to explore the concept of RS using routine EQ-5D-3L/5L data by applying response shift algorithm in item response theory (ROSALI), including establishing if not accounting for it can mask the detection of minimally important difference. We will establish whether RS exists among KA patients, and if so, the magnitude of this effect, including timing and how it may vary with the PROM. We will also engage experts on the use of PROMs in KA to gain insights into how accounting for RS can improve the quality of healthcare decision making. Overall, the goal of this research is to develop recommendations that will help improve the validity of healthcare decisions made based on PROMs data at individual, organizational and policy levels and, ultimately, the quality of care for KA patients. | Ademola Itiola | Populations and Health Systems | 67613 | Ongoing | 2024 | 2026 |
| 1680-RA | System-level PROM collection and EQ instruments: the current state of play | An increasing number of health systems have signalled interest in routine collection of patient-reported outcome measures (PROMs) data to support health system development and value-based care. Widespread implementation of PROM data collection may be hindered by health system stakeholders’ capacity and capability to analyse and interpret the data collected. There is currently no systematic overview of the data, evidence and policy landscape in this space. This project plans to undertake a comprehensive review of current and planned routine PROMs collections internationally. The review will help to document the current state-of-play and to identify knowledge gaps and research opportunities to promote the use of EQ instruments in routine PROM data collection internationally. The work is led by members of the PHS WG and will result in a position paper for internal use by the WG and the wider EuroQoL membership and a peer-reviewed journal article. | Paula Lorgelly | Populations and Health Systems | 39000 | Ongoing | 2024 | 2024 |
| 1758-EO | The uniqueness and overlap of the EQ-HWB and the EQ-5D-5L in four diseases, healthy subjects, and caregivers | Through comparison of the EQ-HWB with the EQ-5D-5L in the Chinese population in healthy subjects, patients, and healthy caregivers, we explored the overlap and uniqueness of the preliminary version of the EQ-HWB. In this research, we explored the distribution, convergent and divergent validity, known group validity, and exploratory factor analysis. Our research found that the EQ-HWB could measure health-related quality of life as the EQ-5D-5L. But it was more sensitive in measure mental disease burden than the EQ-5D-5L. Also, the EQ-HWB possessed the capability for discriminating the caregiving burden, which achieved the aim of the EQ-HWB. In general, the EQ-HWB has the ability for measuring the intervention outcomes across heath care, social care, and public health. | Guangjie Zhang | Education and Outreach | 1248 | Completed | 2023 | 2023 |
| 1694-RA | Better understanding of the transition between Y and adult instruments: taking both measurement and valuation differences into account | Background: Value sets for EQ-5D-Y-3L seem to have different properties compared to their EQ-5D-5L adult value sets, in those countries where both exist. This may be problematic in, for example, longitudinal data collections for respondents in the age range where they transition from the youth instrument to the adult instrument (e.g. roughly 14-20 years old). In theory, the difference in value set properties could lead to a change in the value assigned to the health state of a respondent, without any change in the underlying health, simply caused by using a different instrument as the respondent ages. This raises concerns about the comparability of QALYs derived from youth and adult instruments. Aim: The aim of this study is to investigate whether differences in value set characteristics, combined with differences in descriptive systems for the adult and youth instruments, lead to overall differences in HRQoL (i.e. preference-weighted profiles) when transitioning between the youth and adult instruments. Methods: We use 4 existing datasets in which EQ-5D-Y-3L and EQ-5D-5L response data was collected within the same respondents; a sample of South African children, half of which have a known condition (n=624), a sample of Australian children with known conditions (n=742), and two general population adult samples from the Netherlands (n=2191) and Hungary (n=1196), which contain subsamples of young adults aged 18-24 years. In each of these samples, ceiling effects account for up to 30-40% of the data. We will compare the responses to both instruments descriptively. Furthermore, we will apply value sets to the response data, to explore to which extent the different value set properties of the Y-3L and adult 5L lead to differences in value-weighted profiles, and whether this differs between age and severity groups. | Bram Roudijk | Valuation, Youth | 33640 | Ongoing | 2023 | 2025 |
| 1696-RA | Measuring health-related quality of life using the EQ-5D-5L in the general population in Lebanon during the third worst socio-economic crisis in history | This study is being submitted based on the request to re-submit a revised proposal of the funded project in 2020 (1356-RA titled “A parallel EQ-5D-3L/5L valuation study in Lebanon”). The socio-economic situation in Lebanon has been dramatically deteriorating over the last three years which fueled country-wide protests (started in 2019) due to the bankruptcy of the state and the loss of people’s savings in banks. This was exacerbated by the COVID-19 pandemic which started in March 2020, and the Beirut port explosion in August 2020 that led to the loss of 218 lives, over 7000 injured people (hundreds with permanent disabilities) and an estimated US$15+ billion in property damage. All these events made the EQ-5D valuation study not feasible in terms of field work, as well as whether the timing of developing the value set is reasonable given the ongoing socioeconomic turmoil. The study team discussed these circumstances with the EuroQol Office Scientific Lead and other scientists and decided to put the valuation study on hold until a time of relative stability is reached in the country and it would be more feasible and reasonable to develop a value set. The socioeconomic situation is continuing to decline (currency lost 90% of its value, essential goods like gas, medications are very difficult to find), which led to the second large immigration wave of Lebanese people since the civil war in the 1970’s. The crisis was described by the World Bank as the third worst economic crises in history. It is without any doubt that this crisis had a significant impact on the well-being and quality of life of the Lebanese population. For that, the main objective of this revised study is to measure health-related quality of life (HRQL) of the general Lebanese population using the EQ-5D-5L. The secondary objectives are to: 1) examine the relationship between food insecurity and HRQL and explore whether such relationship varies across population subgroups, and 2) explore the construct validity of the EQ-5D-5L by comparing it to other outcome measures including the SF-12 v2 and the Beirut Distress Scale – 28 items. The study will be cross-sectional observational in design, and will involve conducting an online survey with the general adult population in Lebanon. | Fatima Al Sayah | Populations and Health Systems | 30500 | Ongoing | 2023 | 2025 |
| 1742-EO | Applying for travel scholarship to attend the 2023 ISPOR Europe Meeting: Testing the Psychometric Properties of Several EuroQol Instruments for Measuring the Impact of COVID-19 in a Large Sample of Chinese Children and their Parent Carers | In my completed work, I attended the ISPOR Europe 2023 Conference to present my poster titled "Testing the Psychometric Properties of Several EuroQol Instruments for Measuring the Impact of COVID-19 in a Large Sample of Chinese Children and Their Parent Carers." The study evaluated the Chinese EQ-5D-Y-3L value sets and EQ-TIPS in young patients with COVID-19 and compared EQ-5D-5L and EQ-HWB-S in parent carers, exploring the spillover effects of children's COVID-19 infection on their parents. The presentation took place during the ISPOR Europe 2023 conference in Copenhagen, Denmark, from November 12 to November 15, with the 'Poster Presentation Session' occurring on November 13. During the poster presentation, I engaged in discussions with the audience, providing additional context and insights into the study's methodology, results, and implications. The exchange of ideas with conference attendees, including healthcare professionals, researchers, and practitioners, enriched the overall experience and fostered valuable connections within the academic and research community. The presentation contributed strategic value to the EuroQol Group by extending the application of Patient-Reported Outcome Measures (PROMs) to assess COVID-19's impact on pediatric health. It provided insights into PROMs' effectiveness, aiding instrument selection, and promoting global relevance. The findings enhanced patient-centered research and decision-making, attracting diverse attendees interested in health outcomes assessment, PROMs, pediatrics, and the impact of COVID-19 on health. I also engaged in valuable academic activities, including connecting with the PhD Student Network, attending a relevant short course, and participating in breakout sessions to enhance my understanding of measuring HRQoL in pediatric populations facing life-limiting conditions. | Wenjing Zhou | Education and Outreach | 2370 | Completed | 2023 | 2023 |
| 1744-EO | ISOQOL Annual Conference, Calgary, October 18 - 21; Symposium 7: Measuring and valuing health in children using EuroQol instruments – Challenges and Opportunities | ISOQOL Annual Conference is the leading conference in the world in the area of Quality of Life and PROMs/PREMs. This group of EuroQol researchers (Arto Ohinmaa, Nancy Devlin, Mickael Herdman, Feng Xie and Deborah Marshall) got a symposium accepted to ISOQOL Calgary conference between October 18 and 21. The symposium title was "Measuring and valuing health in children using EuroQol instruments – Challenges and Opportunities" and it was based on EQ-5D-Y related research projects and their findings. It was also designed to provide educational material and opportunities for the audience to ask questions related to measurement and valuation related issues in pediatric HRQOL measurement. The presentation was on Saturday 21st October at 8.30 am (75 min). The structure of the symposium was: - Introduction of the symposium by Arto Ohinmaa (moderator of the symposium) - Measuring health in younger populations: EQ-5D-Y and beyond; Michael Herdman, MSc, Insight Consulting & Research, Mataró, Spain - Methods for valuing child HRQoL: value sets for EQ-5D-Y-3L and related methods challenges; Nancy Devlin, BA(Hons) PhD, University of Melbourne, Melbourne, Australia - Validating the EQ-5D-Y-5L in childhood arthritis: the UCAN precision health study; Deborah Marshall, PhD, University of Calgary, Calgary, Alberta, Canada - Entering the child’s mind: qualitative and quantitative evidence in valuing youth health in Canada; Feng Xie, PhD, McMaster University, Hamilton, Ontario, Canada The symposium speakers provided the current state of play in measuring and valuing health using EuroQol instruments, discussed key challenges and opportunities in advancing the measurement and valuation of health and validation of these instruments in children across a range of diseases, and shared examples from large projects being conducted around the world. All presentations were about 12 to 15 min long followed by a short questioning period. In the end we had a questioning period where audience made several interesting questions related to pediatric HRQOL measurement and valuation. Many of these questions were related to EQ-5D-Y instruments and their valuation issues. | Arto Ohinmaa | Youth, Education and Outreach | 11121 | Completed | 2023 | 2023 |
| 1738-TVG | A visit to APERSU in Alberta for learning and exploring research collaborations aiming to establish an EQ-5D support unit in SIngapore | APERSU is a PROM support unit co-funded by the EuroQol Group. It supports users of EuroQol instruments and other PROMs in Alberta provice, Canada. This travel grant is applied for myself and three PhD students including two EuroQol funded students to attend the 2023 APERSU End-User Meeting in Calgary (Canada) and visit APERSU office in Edmonton (Canada) in October 2023. The aims of this short-term visit are: - To learn APERSU's experience in developing and operating a PROM support unit for a healthcare system - To discuss research collaborations with APERSU - To learn how PROMs are collected and used in Alberta's healthcare system for improving patient care - To present EuroQol research work to the ISOQOL 2023 Annual Conference in Calgary We plan to attend the APERSU annual meeting on 16-17 October and the ISOQOL 2023 Annual Conference on 18-21 October in Calgary (Canada), and then visit APERSU office on 23-24 Oct in Edmonton (Canada). We will attend all the sessions of the 2-day APERSU annual meeting and have informal meetings with selected stakeholders of APERSU during coffee and lunch breaks. We will attend the 4-day ISOQOL and make 2 oral presentations and 3 poster presentations of EuroQol-funded research work. During the 2-day visit to APERSU office, we will have meetings with APERSU staff to learn its history, organization, and day-to-day operations. We will share our EuroQol research with APERSU and discuss research collaboration opportunities and strategies for starting a similar EQ-5D support unit in Singapore. | Nan Luo | Education and Outreach | 8590 | Ongoing | 2023 | 2023 |
| 1691-RA | Psychometric Validation of the EQ-HWB-S and Potential Cognition Bolt-on Items for the EQ-5D-5L in Dementia Patients in Hong Kong SAR, China | Cognition is an important aspect of Health-related Quality of Life (HRQoL) not covered by the five dimensions of the EQ-5D, but included in the EQ Health and Wellbeing (EQ-HWB). A growing number of research has attempted to develop bolt-on dimensions to supplement the EQ-5D, and one of the most discussed is the ‘cognition’ bolt-on. With the problem of aging population emerging worldwide, the prevalence of dementia is expected to surge and increasing number of older adults will live under cognitive impairment. This project aims to examine the feasibility and psychometric properties of the EQ-HWB-S and multiple potential cognition bolt-on items for the EQ-5D-5L in dementia patients in Hong Kong SAR, China. A longitudinal study with two measurement points (baseline and 6 months) will be conducted with dementia patient-caregiver dyads. Besides the EQ-5D-5L and potential cognition bolt-ons, patients will complete the EQ-HWB-S, Mini-Mental State Examination (MMSE) and Alzheimer’s Disease Five Dimensions (AD-5D), while proxies will fill in the EQ-5D-5L with cognition bolt-ons, AD-5D (proxy), DEMQoL-Proxy and Instrumental Activities of Daily Living-proxy (IADL-proxy). Ceiling effect, floor effect, convergent validity, known-group validity and responsiveness of the EQ-HWB-S, and EQ-5D-5L with various cognition bolt-on item(s) will be explored. Based on the study design, the patient-proxy agreement of EQ-5D-5L with cognition bolt-on(s) will be investigated, while the measurement of EQ-5D-5L with cognition bolt-on(s) will be compared with the EQ-HWB-S and other dementia-specific preference-based HRQoL instruments (AD-5D and DEMQOL). This proposal intends to produce new psychometric evidence about two EuroQol instruments in a condition-specific context. | Clement Cheuk Wai Ng | Descriptive Systems, EQ-HWB | 69560 | Ongoing | 2023 | 2025 |
| 1676-RA | EQ-HWB, EQ-5D-5L, and ICECAP-A: A Comparative Study of Health and Wellbeing Measures in Ireland | This study conducted a psychometric validation of the EQ-HWB and EQ-HWB-S instruments in an Irish general population sample, comparing them with the EQ-5D-5L and ICECAP-A. The analysis, based on data from 1,220 respondents, revealed that both EQ-HWB versions demonstrated good psychometric properties, including lower ceiling effects than EQ-5D-5L and ICECAP-A. The EQ-HWB showed strong correlations with EQ-5D-5L and moderate correlations with ICECAP-A, suggesting it captures both health-related quality of life and broader wellbeing aspects. Factor analysis identified a unique five-factor structure spanning health and wellbeing domains. While EQ-5D-5L showed higher sensitivity to health problems, EQ-HWB captured a wider range of wellbeing concepts. The study also provides insights into the potential effects of ongoing modifications to the EQ-HWB, particularly the rewording of positively framed items. These findings contribute to the growing body of evidence on the EQ-HWB's performance and inform its use in various healthcare and policy contexts. | Irina Kinchin | EQ-HWB | 25000 | Completed | 2023 | 2024 |
| 1713-RA | Alternative Wordings for the EQ-5D descriptive Systems: Optimising Measurement Excellence - Stage 1 (AWESOME 1) | BACKGROUND: The AWESOME project aims to generate new evidence regarding challenges with the current wording of the four EQ-5D instruments and to identify possible wording improvements. Stage 1, detailed here, intended to provide empirical evidence, harvested from the cognitive debriefing (CD) reports of routine translation, to support the need for the larger project. OBJECTIVES AND METHODS Drawing on the VMC repository, cognitive debriefing (CD) reports were analysed to identify the range and nature of wording issues identified during translation. The specific objectives were to: a) Establish the range, nature and frequency of wording issues identified during CD. b) Identify the range and type of solutions offered to translators to overcome these problems, and to note how often and in which languages (and language groups) such solutions are implemented. d) Explore if certain respondent characteristics are related to these reported problems (e.g. age, health condition, etc.). A mixed methodology was used to analyse 87 cognitive debriefing (CD). These reports comprised eight 3L, 32 5L, 36 Y-3L and 11 Y-5L versions from 54 countries and included 55 unique languages and 633 respondents (296 adults and 337 children). RESULTS: Comprehension Issues: Approximately 47% of respondents provided one or more responses to probing questions indicating an interpretation of EQ-5D terms which deviated from the EuroQol’s official Definition of Concepts document. Four main problem types were identified: • Interpretation: Difficulties in understanding high register terms such as “mobility” or “anxiety”; broader interpretation of defined concepts. • Qualifier Comprehension: Variability in interpreting severity qualifiers, particularly the mid-level qualifiers (2nd level in the 3L versions and 2nd and 3rd level in the 5L versions). • Non-Health Centered Examples: E.g., responses influenced by developmental stages (mostly children) rather than health-centered examples, particularly in the Self-care dimension and Depression/Anxiety dimensions. • Dual constructs in the same dimension causing confusion: E.g., in the dimension heading (e.g. Pain or Discomfort) or dissonance between heading and level descriptors (e.g., Mobility and Walking about). Translatability Challenges: Difficulty in finding equivalent terms in the target language for concepts led to the use of alternate words to the English source in 61 of the 87 translations (70%) (e.g., Worried instead of Anxious in the adult versions). OUTCOMES As per the primary intended outcome, commonly misunderstood words and phrases and possible alternative words and phrases were identified to be tested in Stage 2. The results have been presented in the 2024 Copenhagen and Noordwijk EruroQol meetings and shared with the AWESOME Team and the VMC to inform the formulation of alternative versions to be empirically tested during Stage 2. Additionally, a comprehensive list of all words or phrases that have proved challenging, and the suggested alternative phrasing that was approved by reviewers, has been developed and these are in the process of incorporation into the Definition of Concepts document. This extended glossary will further assist in standardisation of any changes required to ensure cultural acceptability RECOMMENDATIONS: 1. Proceed with AWESOME Stage 2 to empirically test proposed alterations in collaboration with the VMC. This could potentially lead to simplified English wording more easily translated into other languages. 2. Work with the wider VMC to expand the VMC Definition of Concepts documents to include acceptable alternatives for semantic equivalence. CONCLUSION: EQ-5D instruments show overall linguistic and conceptual validity, yet the range and frequency of deviations from the defined concepts indicate the need for improvement to enhance cross-cultural comparability and age-appropriate continuity. | Jennifer Jelsma | Descriptive Systems, Youth | 41750 | Ongoing | 2023 | 2024 |
| 1739-EO | ISOQOL Dissemination of the of the adapted (modified) EQ-5D-Y validation study | PhD student, and EuroQol PhD network member, Alexander van Heusden successfully presented his research titled "Psychometric validation of the adapted EQ-5D-Y (-3L and -5L) against PedsQL for use in children aged 2-4 years" at the ISOQOL 2023 conference in Calgary, Canada. Alexander van Heusden met and fostered social connections with other EuroQol PhD network members that attended the conference. | Alexander van Heusden | Education and Outreach | 1250 | Completed | 2023 | 2023 |
| 1612-RA | Impact of demographic change on expected value set redundancy | Aim: To investigate the contribution of demographic trends in countries’ age and gender composition to value set obsolescence. Methods: Time-trade off (TTO) valuation data from 3 EQ-5D-3L value sets of 20 years or older from the United Kingdom, Japan, and the United States were re-analyzed using Bayesian heteroskedastic Tobit models with sex and age group-specific scale parameters. Original value sets were obtained by weighting the original preference structures with the countries’ original demographic composition at the time of the data collection. Updated value sets were created using the original preference structure weighted using the countries’ most recent demographic composition. The differences between the original and updated value sets were monitored and compared based on 95% credible intervals. Results: The gender and age composition of the investigated countries changed in all 3 countries over time. The modelled health state preferences also depended on the respondents’ gender and age. However, the overall impact of demographic change on the investigated value sets was negligeable. Conclusion: Value sets may become redundant and obsolete for various reasons, but demographic change was not found to be a contributing factor. | Marcel Jonker | Valuation | 22000 | Completed | 2023 | 2023 |
| 1646-RA | Building the health-related quality of life evidence for Bangladesh’s children: piloting EQ-5D-Y Bangla version instrument for Bangladesh | In recent years, there has been rising interest in the assessment of health-related quality of life (HRQoL) in children and adolescents in public health research, clinical and economic evaluation. In 2009, the EuroQoL Group introduced the EQ-5D-Y, a child-friendly version for children and adolescents and made available for more than 100 languages with various modes of administration. The instrument has been widely used in many high-income countries, however, there is currently no language-specific (i.e., Bangla version for Bangladesh) version of the EQ-5D-Y to measure HRQoL among children. The current project aims to pilot test a Bangla version of the EQ-5D-Y instrument in Bangladesh that will inform a ‘to be conducted’ large household survey covering multiple administrative divisions to collect and analyse health data using piloted EQ-5D-Y Bangla version. Findings of this research will advance current literature through novel evidence from Bangladeshi parents and children on the acceptability, feasibility and validity of the EQ-5D-Y instrument as a measure of children’s HRQoL. | Marufa Sultana | Youth | 12000 | Ongoing | 2023 | 2025 |
| 1679-RA | Garbage in, garbage out? Evaluating the ability of the garbage class MIXL model to identify random response patterns | Background: Health state valuation studies typically rely on commercial survey sample providers to recruit respondents for discrete choice experiments. However, unattended surveys in commerical panels are known to result in datasets with a non-negligeable number of garbage class respondents. The garbage class MIXL model has been introduced to identify these respondents and to produce estimates of the garbage class size as well as model estimates that are purged from the influence of garbage class respondents. Garbage class MIXL models have been shown to outperform internal validity tests and they are more convenient than root likelihood-based selection of respondents. However, there is currently no easy-to-use software implementation of the garbage class MIXL model and the model's statistical performance, in terms of bias and root mean squared error (RMSE), has yet to be established. Aims: To create an easy-to-use Stata module to fit the garbage class MIXL model, to asses the statistical performance of the garbage class MIXL model in a range of scenarios and model settings, and to compare the performance of the garbage class MIXL vis-à-vis that of the standard MIXL model. Methods: Statistical simulations based on a new Stata 'garbage class MIXL' command will be used to establish the degree of bias and RMSE of the garbage class and standard MIXL model and to investigate the influence of choice consistency, preference heterogeneity, number of choice tasks, sample size, and the garbage class size on the performance of the models. Further technical details are provided in the research strategy. | Marcel Jonker | Valuation | 55000 | Ongoing | 2023 | 2024 |
| 1734-TVG | ‘Decolonizing health’: Perception and development of a conceptual health framework among children and adolescents in sub-Saharan Africa and its content comparison with the EQ-5D-Y | Purpose Most health measurement instruments are based on a conceptual framework developed either in a western culture or with adults or both. Few investigators have considered how health is perceived by children and adolescents in low-income countries (LICs) particularly in sub-Saharan Africa. This study aimed to understand how health is thought about by children and adolescents in Malawi, develop a conceptual framework, and compare its content with that of the EQ-5D-Y. Methods Four focus group discussions (FGD) were conducted in 2019- 2020 among children and adolescents aged 8-17years from schools around Blantyre urban, Malawi. After consent/ assent from both parents and children, a semi-structured discussion in each group explored how participants understood health and what it meant to them. Each focus group was recorded and transcribed verbatim in English and thematic coding undertaken to identify concepts and sub-concepts of the conceptual framework. Results The final sample had a total of 37 participants- 21 females and 16 males (8-17 years). Qualitative analysis identified seven concepts (existence/functionality, self-care, strength/energy, peace of mind, absence of illness, God-given, and acceptance of illness). Comparison with the EQ-5D-Y showed that four of the five EQ-5D-Y dimensions were captured by the conceptual framework. The dimension of “pain or discomfort” was not covered by the new conceptual framework. Further, the new conceptual framework had five concepts that are not in the EQ-5D-Y (absence of illness, acceptance of illness, existence/functionality, strength/energy, and God-given). Conclusion A new conceptual framework of health developed among children and adolescents in Malawi has seven concepts some of which go beyond the EQ-5D-Y. The EQ-5D-Y is a valid utility instrument for use in economic evaluation, but it may not fully represent the concept of health held by children and adolescents in LICs such as Malawi. | Lucky Ngwira | Education and Outreach | 2000 | Completed | 2023 | 2023 |
| 1695-RA | Improving DCE design efficiency with (automated) design updates | Background: Even though it is well-established and common practice for DCE design efficiency to be improved through sample-specific design updates, the EQ-VT (5L/Y) continues to rely on a 'one-single-design-fits-all-countries' approach. Based on existing literature it is unclear whether the EuroQol Group should revise this approach and, if so, how much efficiency would be gained. Aim: To systematically investigage the design efficiency improvements obtained for a range of possible DCE design update strategies, including the option of an update strategy based on multiple pilot samples that can be automated for online data collection. Methods: The relative design efficiency achieved through seven different design update strategies is evaluated in a simulation study for eight different scenarios. Four synthetic scenarios are used to allow for systematic variation in the degree of choice consistency and preference heterogeneity, and four real-life scenarios cover a wide range of DCE design dimensions, including the EQ-5D-5L instrument. All achieved design efficiencies are averages achieved across 10 independent runs and proposed to be expressed on a scale that ranges from 0% to 100%, with 0% denoting the design efficiency achieved based on the most simplistic model without making use of any prior information and 100% denoting the design efficiency of the most advanced MIXL design combined with on full prior knowledge of the respondents' preferences. Further technical details are provided in the research strategy. | Marcel Jonker | Valuation | 35500 | Ongoing | 2023 | 2024 |
| 1666-VS | Estimating EQ-5D-Y-3L Value Set for the kingdom of Saudi Arabia using DCE and c-TTO Values | Introduction: EQ-5D-Y-3L valuation studies are now being conducted in several countries. The idea of health-related quality of life (HRQoL) is multifaceted and focuses on how a health condition and its treatment affect a person's daily life. Assessing young people's HRQoL will be crucial for the evaluation of treatments and for public health research, just as it is for the adult population. Even though the EQ-5D-Y version is receiving more attention, there are few data on the health of the youth population, particularly in the Middle East. The measurement and valuation of HRQoL outcomes, resource allocation, planning of healthcare interventions, and policy decision making for Saudi populations will all be significantly impacted by this research. Objectives: to estimate a value set for EQ-5D-Y-3L among Saudi Arabia's Youth population (8–15 years old) in terms of population health status. Methods: The study will employ a discrete choice experiment (DCE) exercise to ascertain the relative importance of each EQ-5D-Y level in each dimension using the valuation approach, as recommended by the EuroQol Group for EQ-5D-Y research. The latent scale DCE value set will then be anchored into the quality-adjusted life years (QALY) 0–1 scale using a data from a sample of composite time-trade off (C-TTO) interviews. A representative sample of 1000 adults interviews from the general community will be conducted as an online discrete choice experiment (DCE) to elicit preferences for the EQ-5D-Y health state, and 200 interviews will be done in a face-to-face interview using composite time trade-off (cTTO). The EQ-VT survey will take into account any Arabic translations. The questions will ask respondents to imagine a 10-year-old child living with the health problems described by the health state that is being valued. Responses from DCE and c-TTO will be collected through adults from the general population taking a discerned perspective: adults responding the elicitation tasks from what they would prefer for a 10 years old child perspective. | Professor Ahmed Hamdan AlJedai | Valuation, Youth | 0 | Ongoing | 2023 | 2024 |
| 1681-RA | Health-Related Quality of Life in children attending specialist health services | The development of the EQ-5D-Y-5L (Y-5L) and its imminent move to Beta status has created a demand for mapping the EQ-5D-Y-3L (Y-3L) values to the Y-5L while the international protocol for valuation of the EQ-5D-Y-5L is developed. One of the challenges identified with mapping is having sufficient data across the severity spectrum. This study aims to recruit patients, and their caregivers, attending specialist health services, with presumed severe health profiles, to contribute paired Y-3L and Y-5L responses for the purposes of mapping. The secondary aim is to assess the psychometric performance of the Y-3L, Y-5L (proxy and self-report) and EQ-TIPS in this cohort of children. Furthermore, the impact of caring for these children will be assessed with the EQ-5D-5L and CarerQol. | Janine Verstraete | Youth | 47339 | Ongoing | 2023 | 2025 |
| 1665-RA | Evaluating the validity of the EQ Health and Wellbeing short (EQ-HWB-S) in a large general population sample. | The EQ Health and Wellbeing short (EQ-HWB-S) is a new generic measure of health and wellbeing designed for evaluating interventions in public health, social care and healthcare. The EQ-HWB-S was developed to be used to estimate quality-adjusted life-years (QALYs). The EQ-HWB-S currently has experimental status and as with the development of any new measure, it is important to investigate the instrument’s psychometric performance and validity across different populations and settings. The aim of this project is to utilise a large survey of members of the UK public (SIPHER-HWMIC) to compare the EQ-HWB-S with a range of instruments which also measure health and broader concepts of wellbeing including the ICECAP-A, WEMWBS, HUI3 and SF-12. Additionally, the study will assess the psychometric performance of the EQ-HWB-S including the convergent validity and known-group validity of the EQ-HWB-S, relative to other instruments. | Emily McDool | EQ-HWB | 22180 | Ongoing | 2025 | 2025 |
| 1710-VS | Valuation of the EQ-5D-5L in Greece | **Background:** Since the first publication of the EuroQol (EQ-5D) instrument in Greece in 1996, (Yfantopoulos 1996), the EuroQol methodology (EQ-5D-3L and EQ-5D-5L) has been used extensively in Greece for measuring HRQoL, for population-based studies and for economic evaluations **The Greek HTA** body makes use of the EQ-5D instrument for economic evaluation decisions, using the tariffs from other countries. (Mainly European and the U.K values sets). Given the lack of a Greek tariff the purpose of this project is to fulfill the existing gap and enrich the current European and global literature with a value set of the EQ-5D-5L for the Greek population. **Objective:** This study aims to derive an EQ-5D-5L Greek value set representative of the age, sex, and education level for the Greek public adult population. **Methods**: Preferences for the Greek Population will be collected using the EQ-VT-V2 standardised valuation protocol proposed by the EuroQol Group. The composite time-trade off (cTTO) method and the Discrete Experimental Method (DCE) will be explored in our analysis. Fifteen trained interviewers from Ph.D. students and researchers from the MBA-Health Economics Department of the University of Athens will be trained to collect at least 1,000 fully recorded responses. The 1,000 subjects will be selected from various socio-economic backgrounds across different regions from Greece. Standard Quality Control (QC) will be employed throughout the selection of data. A hybrid model will be specified to estimate the Greek EQ-5D-5L value set. Additional GLS, Tobit, probit, and multiplicative models will be fitted to the collected data. | John (Yannis) Yfantopoulos | Valuation | 50000 | Ongoing | 2023 | 2024 |
| 1693-RA | RAndomized Matched PAirwise Choice Tasks (RAMPACT): making the stand-alone DCE with duration protocol robust to flatliners and validate the protocol’s results with cTTO. | OBJECTIVES: To evaluate two methodological extensions of the split-triplet discrete choice experiment (DCE) format for health state valuations: first, randomization of the choice task order, and second, the inclusion of additional pairwise choice tasks for improved anchoring of latent DCE results onto the quality-adjusted life year (QALY) scale. METHODS: Three study arms with increasing levels of choice task randomization were implemented in a Dutch DCE (n=1,522). Each DCE respondent completed 15 split-triplet and 8 additional pairwise choice tasks. A parallel composite time trade-off (cTTO) study (n=411) provided external benchmark values. Value sets were compared based on QALY decrements, pit state values, percentage of health states worse than dead, estimated discount rates, and relative choice consistency. RESULTS: Choice task randomization increased task complexity, led to more negative pit state values, and resulted in higher percentages of states worse than dead. The original non-randomized split-triplet format showed closest agreement with cTTO results. The additional pairwise choice tasks improve statistical identification of discount rates and produced more reliably anchored value sets that better corresponded to the cTTO benchmark. CONCLUSIONS: Our findings recommend against choice task randomization in split-triplet choice tasks while supporting the inclusion of supplemental pairwise tasks for improved anchoring. The study advances methods for standalone DCE health state valuations and expands the evidence base in support of an official EuroQol-approved DCE-based health state valuation protocol. | Marcel Jonker | Valuation | 112570 | Completed | 2023 | 2024 |
| 1716-TVG | Scale and rate heterogeneity in EQ-5D-5L valuation. | Scale and Rate Heterogeneity in EQ-5D-5L Valuation - This study aims to determine US EQ-5D-5L values by estimating quality-adjusted life year (QALY) scores based on individual preference evidence. Choice analyses are commonly used for this purpose, involving additional parameters like scale factors and discount rates. We investigate the impact of allowing variation in these scale and rate parameters on the estimation of US EQ-5D-5L values in our research. Comparing the Conditional Logit Estimates and True parameters under Preference Heterogeneity: A Simulated Discrete Choice Experiment - This article focuses on Health Preference Research (HPR), a subfield of health economics that aims to understand the value of health-related objects through observational or experimental methods. Specifically, the study uses a simulated Discrete Choice Experiment (DCE) to investigate how interpersonal heterogeneity affects the estimation of coefficients, willingness-to-pay (WTP), and choice predictions in the context of choice probabilities described by logit functions with fixed individual-specific parameters. The simulation results indicate that when heterogeneity is ignored in health preferences, Conditional Logit (CL) estimates may be biased, leading to substantial differences in true and estimated WTP (up to 20%). However, despite this bias, the CL and true choice probabilities remain relatively similar to each other (difference less than 0.08). This suggests that CL estimates may differ from their true means under preference heterogeneity, leading to underestimation of WTP and potentially impacting the value of treatment and quality of care in health economics research. The study emphasizes the importance of recognizing and addressing preference heterogeneity in health economics studies, especially when using CL, a widely used model in practice. Comparing the Mixed Logit Estimates and True parameters under Informative and Uninformative Heterogeneity: A Simulated Discrete Choice Experiment - This study explores the impact of unobservable heterogeneity in discrete choice experiments (DCEs) on the estimation of mixed logit models. Unobservable heterogeneity refers to latent factors that influence individuals' choices but are not directly observable. These factors can be modeled using correlated (informative heterogeneity) or uncorrelated (uninformative heterogeneity) individual-specific parameters in a logit model. The researchers conducted simulations to compare the results of maximum simulated likelihood (MSL) estimation for correctly specified and mis-specified mixed logit models. The findings indicate that MSL estimates are biased and significantly deviate from the true parameters, even when the model is correctly specified. The study recommends that choice modelers conduct simulation analyses before estimating a mixed logit model to assess potential biases and identify the model specification that minimizes bias in the estimates, especially in terms of variances and correlations. | Maksat Jumamyradov | Education and Outreach | 1870 | Completed | 2023 | 2023 |
| 1654-TVG | The impact of COVID-19 on EQ-5D-Y-3L, EQ-TIPS, EQ-5D-5L and EQ-HWB-S in Chinese children and their parent carers | [Objectives] The serious impact of the COVID-19 pandemic in China provided a unique opportunity to test the newly published Chinese EQ-5D-Y-3L value sets and EQ-TIPS in a very large sample of young patients with COVID-19 and children affected by the lockdown. Additionally, we compared the psychometric properties of the EQ-HWB-S and the EQ-5D-5L in capturing health status and well-being in parental carers of children with COVID-19, and identified spillover effects of the disease of children with COVID-19 towards their parents and other factors associated with lower worse health status. [Methods] 861 patients with COVID-19 completed the baseline survey in the hospital. Of this sample 311 patients needed outpatient treatment or were temporally hospitalised completed a follow-up survey after 2-3 weeks in the hospital. The EQ-TIPS, Y-3L, EQ-5D-5L, EQ-HWB-S, and overall health assessment (OHA) were digitally administered. 231 healthy children and their parents were recruited as health controls using a snowball method and were administered online at home. Clinical data were collected from medical records. The analysis included assessment of known-groups validity, by comparing the proportion of dimension responses, the Level Sum Score (LSS) for EQ-TIPS and EQ-HWB-S, the index score for Y-3L and EQ-5D-5L, and EQ-VAS across children with different health status using effect sizes. Test-retest reliability and child-parent agreement were also evaluated using intraclass correlation coefficient (ICC). Responsiveness of four EQ instruments to changes in respondents with improved health status was assessed using standardized effect sizes (SESs). Associations between patient’s health condition and lower parent’s HRQoL was examined by multivariate linear models. [Results] • Regarding distributional properties, children with COVID-19 experienced more problems across all dimensions compared to non-infected children, except for “communication” for EQ-TIPS; Parents' physical functions were more impacted by child’s infection than emotional functions; EQ-HWB-S demonstrated a lower ceiling effect in dimensions that overlap with EQ-5D-5L. • Regarding known-groups validity, children with COVID-19 (and their parents), those with more severe disease, or poorer OHA reported higher EQ-TIPS LSS, lower EQ-5D-Y/EQ-HWB-S/EQ-5D-5L index scores and lower EQ VAS compared to those non-infected, with milder disease severity, or with poorer OHA, supporting a good known-groups validity (ESs: 0.60-1.91); Self-completed EQ-5D-Y performed better than proxy version; EQ-5D-5L differed in relation to more child’s health conditions than EQ-HWB-S. • ICC was 0.866 for EQ-TIPS LSS, 0.726 for self-completed EQ-5D-Y index, 0.845 for proxy EQ VAS, 0.764 for EQ-HWB-S index, 0.769 for EQ-5D-5L index, 0.702 for parent’s own EQ VAS; Gwet’s AC1for EQ-HWB-S ranged from 0.33 (anxiety) to 0.79 (mobility); and from 0.41 (anxiety/depression) to 0.76 (mobility) for EQ-5D-5L, demonstrated good test-retest reliability. ICC ranged from 0.653 to 0.823, and Gwet’s AC from 0.470 to 0.738 demonstrated moderate to good child-parent agreement for EQ-5D-Y. • EQ-TIPS was responsive to health improvement (SESs: 0.98 - 1.75). Proxy Y-3L performed better responsiveness than the Self-report version (SESs: 1.16-2.29 vs 1.13- 1.98). Most of the items and scores for the EQ-HWB-S performed similar and good responsiveness as the EQ-5D-5L to improved children’s or their own health condition (SESs: 0.23-0.91 vs 0.4-0.91), and was more sensitive for the physical dimensions. • Both EQ-HWB-S and EQ-5D-5L could estimate spillover effects associated with child’s different health conditions related to COVID-19 infection, as well as their health improvement; EQ-HWB-S exhibited better discriminate ability to children with or without COVID-19, while EQ-5D-5L showed better sensitivity to child’s improvement. • Patients with a longer duration of disease and more severe disease condition, including gastrointestinal issues, exhibited a correlation with a lower EQ-HWB-S LSS score. An extended disease duration in conjunction with COVID-19-related pneumonia or conjunctivitis was linked to a reduced EQ-5D-5L index score. Additionally, when a patient had a lengthier disease duration and their parent had contracted COVID-19, it was associated with a lower EQ VAS score for the parent. [Conclusion] The results of this large study support the reliability, validity and responsiveness for the EQ-TIPS and EQ-5D-Y-3L in assessing health outcomes of young patients affected by COVID-19. The EQ-HWB-S and EQ-5D-5L performed good with comparable construct validity and responsiveness among parental carers. These findings highlight their potential as promising instruments for estimating the spillover effects associated with a child's health condition in relation to COVID-19 infection. | Wenjing Zhou | Youth | 9900 | Ongoing | 2023 | 2023 |
| 1655-EO | IHEA Pre-congress session on EQ-5D as a measure of population health, plus sponsorship of 7 LMIC ECR delegates to attend IHEA | The project delivered a pre-congress session at the International Health Economics Association (IHEA) meeting in Cape Town in July. The pre-congress session was led by the Population and Health Systems Working Group and focused on EQ-5D as a measure of population health. Trudy Sullivan, Des Scott and Kompal Sinha presented EuroQol funded work on POPQOL, DAPHNIE and IndiQol, respectively. The session was moderated by Paula Lorgelly. In addition to providing funding for the pre-congress session, the grant also supported six ECRs from LMICs to attend the IHEA Congress. | Paula Lorgelly | Education and Outreach | 29000 | Completed | 2023 | 2023 |
| 1539-SG | Variability and ease of access in proxy quality of life interviews at the ICU | Intensive Care teams need to choose the most efficient treatment option for patients presenting with acute critical illness. Efficient treatment is based on the combination of treatment availability and estimated success or effectiveness, which is increasingly quantified as the estimated or expected gain in quality of life (QoL) for the patient, given survival. To estimate if and which treatment leads to an acceptable QoL, the QoL before hospital admission (baseline QoL) has to be known. It is often not possible to question ICU admitted patients due to the nature of their disease. An alternative would be to consult proxies (i.e. the patient’s family, general practitioner or medical specialist for chronic care) to obtain baseline QoL. It is known that QoL measurements obtained from patients differ from QoL measurements obtained from proxies.1,2 The difference in response between and ease of access to different proxies, however, has to our knowledge never been studied in an ICU population. Therefore, we propose to use the EQ-5D5L to structure QoL interviews on the ICU, and to investigate if different types of proxies (e.g. family members, general practitioner, physician, nurse, physiotherapists, medical specialist for chronic care, and the patient (if possible)) vary in response. This investigation will identify possible heterogeneity in the baseline QoL information. This will be the first step towards standardization in providing unbiased QoL information to the Intensive Care Team to favor treatment decisions for all patient categories in an equal way, and paves the way for more in depth research on the importance of measuring EQ5D-5L on the ICU. | Iwan van der Horst | Populations and Health Systems | 50000 | Ongoing | 2023 | 2025 |
| 1587-TVG | Learning and promoting health measurement and valuation using EQ instruments across continents | Feng Xie | Education and Outreach | 18250 | Ongoing | 2023 | 2025 | |
| 1627-RA | Health-related quality of life in patients with COVID-19: a protocol for systematic review and meta-analysis of EQ-5D studies | Introduction: COVID-19 affects millions of persons worldwide, with a significant proportion experiencing long-COVID and impaired health-related quality of life (HRQoL). Despite numerous primary studies, the impact of COVID-19 on patients, as measured by the EQ-5D instrument, has not been examined using a systematic review and meta-analysis. Therefore, this systematic review and meta-analysis aimed to identify and summarize the currently available evidence on the HRQoL in patients with COVID-19, measured using EQ-5D. Methods: A systematic search of PubMed, Embase, Web of Science, Scopus, and the Cochrane Library was conducted for English-language studies published between December 2019 and January 2023. The included studies were peer-reviewed and assessed HRQoL of COVID-19 patients using the EQ-5D. Quality and bias were evaluated using the Newcastle-Ottawa Scale. Pooled estimates of health utility values were analyzed using a random-effects model, with further subgroup analyses conducted. Heterogeneity was assessed using I2 statistics. Predictors of poor HRQoL were identified from each article and narrated qualitatively. Results: Our search identified 1797 references, resulting in the selection of 87 studies involving 25,711 participants. The majority of studies used the EQ-5D-5L (79.3%) instrument. The pooled mean EQ-5D utility score for COVID-19 patients was 0.79 (95% CI: 0.75-0.84; I2 = 99.8%), and the pooled EQ-5D VAS mean score was 71.73 (95% CI: 69.35 – 74.12; I2 = 99.2 %). Pain/discomfort and anxiety/depression were the dimensions most affected, with pooled estimates of 49% (95% CI: 41-56) and 44% (95% CI: 35-53), respectively. Subgroup analysis revealed significant differences based on age subgroups and continents. We identified 42 studies that reported on predictors of HRQoL among COVID-19 survivors. The most common predictors were demographic factors such as older age and female gender, as well as clinical factors such as disease severity, comorbidities, and post-COVID-19 symptoms. Conclusion: This study presents a comprehensive summary of evidence concerning HRQoL in patients with COVID-19. Our analysis revealed a reduction in HRQoL, as indicated by EQ-5D utility scores among COVID-19 patients compared to general population. These findings will aid healthcare professionals and policymakers in better understanding the groups that may experience a greater burden due to COVID-19. The mean utility value derived from this study can assist in calculating Quality-Adjusted Life Years (QALYs). | Kidu Gidey | Populations and Health Systems | 24728 | Ongoing | 2023 | 2024 |
| 1592-RA | **Variability and reliability of the EQ-HWB-S and the EQ-5D-5L when health fluctuates: A mixed-methods study in dementia diseases** | **Background:** Recurrent fluctuations in health states affect the variability and reliability of generic patient-reported health outcome measures. The EQ-5D-5L and its recall period of today may not capture recurrent health fluctuations. However, the newly developed EQ-HWB uses a recall period of 7 days, having the opportunity to cover recurrent health fluctuations, frequently observed in people living with dementia. **Aim of research:** This study aims to evaluate if the EQ-HBW-S, with its seven-day-recall period, better captures recurrent fluctuation in patients living with dementia compared to the EQ-5D-5L, with its recall period of today. Thus, the study's objectives are (1) to measure the variability and reliability (test-retest and inter-rater) of both measures over a 14-day time horizon and (2) to elicit patients' and caregivers' experiences with and preferences for both measures and used recall periods in this fluctuating condition. **Proposed methods:** Within this mixed-methods n=50 caregivers of n=50 patients living with dementia will (1) complete a daily diary for 14 days, documenting patients' day-to-day health fluctuation, its intensity and the affected EQ-5D-5L and EQ-HBW domains. Additionally, the EQ-HWB-S, the EQ-5D-5L and the EQ-VAS will be administered as i) self- and ii) proxy-proxy rating at day one, seven and 14 (n=300 EQ-5D-5L, EQ-VAS and EQ-HBW-S assessments, respectively). EQ-instruments will be quantitatively analyzed in terms of variability (proportion of patients/caregivers with varying level scores (LS) and level sum scores (LSS); mean change of LS and LLS, including standard deviation and variance of LS and LSS change), inter-rater and test-retest reliability (intraclass correlation coefficient) in consideration of the documented health fluctuations (infrequent, occasional, frequent). After 14 days, (2) caregivers will be interviewed about their experience with both measures, if they adhere to the recall periods and which recall period would be more appropriate to capture recurrent health fluctuations and the general health status in dementia more precisely. **Benefits to the group:** This study will provide first evidence about the variability and reliability of EQ-HWB-S when health fluctuates, demonstrating the ability to capture day-to-day fluctuations of health in comparison to the EQ-5D-5L. Based on caregiver and patient experiences, this study will generate both qualitative and quantitative evidence about the preferred measure and recall period in a disease with frequent health fluctuations. We expect our study results to be useful for further developing the EQ-HWB instrument. | Bernhard Michalowsky | Descriptive Systems, EQ-HWB | 59700 | Ongoing | 2023 | 2025 |
| 1573-RA | Exploring inequalities in HRQoL in long COVID in Aotearoa New Zealand | Long COVID – COVID-19 symptoms or sequelae that persist for longer than three months – is a significant public health problem. Marginalised and deprived groups have been shown to be at greater risk of COVID-19 infection and severe disease, but little is known about the relationship between deprivation and long COVID. This proposal extends a MoH funded long COVID registry project by expanding recruitment, increasing the frequency of data collection with respect to the EQ-5D-5L and extending the analysis to explore long COVID inequalities. There are three overarching aims: (a) to address the recent WHO call for evidence by contributing much needed data on long COVID HRQoL; (b) to provide evidence on long COVID inequalities in Aotearoa New Zealand; and (c) to offer evidence on how the EQ-5D-5L captures health inequalities. | Paula Lorgelly | Populations and Health Systems | 138600 | Ongoing | 2023 | 2024 |
| 1559-RA | Testing the validity of the EQ-HWB-s in caregivers of children with health conditions | Introduction The EQ Health and Wellbeing (EQ-HWB) is a generic new instrument developed internationally to use in evaluating interventions across health, public health, and social care, and enabling the inclusion of impacts on caregivers. Evaluations of the instrument’s performance in a range of informal caregiver populations is now needed. The EQ-HWB has 25-items. A short form, the EQ-HWB-S has 9-items. Objectives In study 1, we aimed to investigate the validity and reliability of the EQ-HWB and EQ-HWB-S in parents of children with health conditions, specifically distinguishing differences in caregiver contribution, support, finance, work, and caregiver health. In study 2, we aimed to conduct a content analysis for the EQ-HWB to investigate its comprehensibility, relevance and comprehensiveness. The comprehensiveness of the EQ-HWB-S was investigated by exploring participants’ views on the inclusion of additional items from the EQ-HWB and items from the CarerQol-7D. Additionally, we aimed to assess the content validity of potential modifications of EQ-HWB items that are currently being considered by the EQ-HWB Working Group. Methods In Study 1, we explored EQ-HWB item response distributions across a sample of 225 participants who were parents of children with a range of health conditions. Convergent validity of the EQ-HWB was assessed against the EQ-5D and CarerQol-7D questionnaires using Spearman correlations. Known-groups validity analysis was conducted on caregiver outcomes using t-tests (Cohen’s d as the effect size), and one-way ANOVAs (with Eta-squared for effect size) for EQ-HWB and EQ-HWB-S sum-scores, and EQ-HWB-S, EQ-5D-5L, and CarerQol-7D index-scores. Test-retest reliability was conducted over 2-days using Intraclass Correlation Coefficients (ICC) for totals and Kappa for items, on the follow-up data (n=193). In study 2, we conducted qualitative analysis on a subsample of 21 participants who participated in semi-structured interviews. We used content and thematic analysis techniques to analyse the data. Results In study 1, we found that the physical EQ-HWB items (seeing, hearing, mobility, activities, personal-care, felt unsafe) were more negatively skewed than other EQ-HWB items. Known-group validity results conformed to a priori hypotheses; effect size comparisons between instruments varied. Convergent validity results confirmed to hypotheses between EQ-HWB and EQ-5D-5L, and somewhat conformed against the CarerQol-7D items. ICC results were excellent; Kappa results suggested moderate test-retest agreement, with variation across items. In study 2, we found that the 25 items had high relevance and were well understood by participants, although there were some difficulties with comprehension regarding the wording of the seeing and hearing items. The selection of the 9 items for the EQ-HWB-S was positively received by participants. We investigated a range of potential changes to the items which may help in finalising the EQ-HWB-S to Beta status. Conclusions The EQ-HWB instruments were found to be valid and reliable against our criteria, and distinguished between groups for caregiver contribution, support, finance/income, and caregiver health. The EQ-HWB instruments seem suitable for measuring quality-of-life of caregivers of children with health conditions. Qualitative analysis supported the COSMIN concepts of relevance, comprehensibility and comprehensiveness of the instrument in this sample of caregivers of children with health conditions. | Dr Cate Bailey | Descriptive Systems, EQ-HWB | 86107 | Ongoing | 2023 | 2024 |
| 1606-RA | Examining whether the covid-19 pandemic has affected the Danish general population’s preferences for health | The use of EQ-5D value sets in healthcare decision-making underlines the importance of value sets validly representing the population’s health preferences. However, limited evidence exists on which factors might cause value sets to become redundant. The aim of this study was to examine whether major societal challenges, like the COVID-19 pandemic and the war in Europe, might cause health preferences to shift and potentially warrant the re-estimation of EQ-5D value sets. Health preferences of the Danish population were collected through a combination of computer-assisted personal interviews using Zoom following the EQ-VT 2.1 protocol and an online DCE survey. From December 2023 to April 2024, a total of 100 EQ-VT interviews were conducted and 1,003 respondents completed the online DCE survey with sufficient quality. The newly collected data were compared with health preferences collected in the Danish EQ-5D-5L valuation study that was finalised in 2019, immediately before the COVID-19 pandemic. Comparisons showed no significant shifts in health preferences between 2019 and 2024 . These results indicate that national EQ-5D-5L health preferences remain stable over a five-year period with major societal challenges. | Cathrine Elgaard Jensen | Valuation | 47789 | Completed | 2023 | 2024 |
| 1445-RA | Assessment of Impact of an NGO Support Program – The Dara Project | This proposal aims to examine whether the EQ-HWB measures can be feasible used to capture the effects of a multidimensional social program designed for vulnerable families with children suffering from chronic illnesses. Towards this goal, we will leverage a partnership with the Dara Institute, a well-established Brazilian NGO. In a nutshell, the Dara project focuses on five areas of social and human development: health, housing, education, income generation, and citizenship. Currently, the program impacts on participants quality of life and wellbeing are not being captured, which contrasts with the richness of information available about the socio-economic and health impacts of these on each of the five target areas. This proposal outlines an assessment framework that aims to objectively measure the impacts of this multidimensional program on the quality of life and wellbeing of families and caregivers one year after their inclusion in the program, using outcome measures that are valid and fit for the purpose. We believe that the use of objective, valid and fit for purpose metrics, may contribute to the establishment of a continuous, systematic, and standardized program evaluation framework suitable to generate information about the process of implementation which may help to monitor and improve program performance. It’s in this context that the EQ-HWB measures will be examined, by leveraging the wealth of information that has been collected systematically about these families and the interventions that they have received. The Working Group is developing an experimental EQ-HWB version in Portuguese. | Marisa Santos | Descriptive Systems, EQ-HWB | 32551 | Ongoing | 2023 | 2025 |
| 1588-RA | An exploratory study on the constructs of health-related quality of life and mental well-being: results from a Belgian population survey | Preference-based health-related quality of life (HRQoL) measures, such as EQ-5D, can be used to obtain quality-adjusted life-year (QALY) weights but performed poorly in people with mental health conditions. Mental well-being measures, such as GHQ-12, can provide complementary information but cannot be directly used to optimise the amount and distribution of QALYs under the influence of policy decisions. The impact of the COVID-19 pandemic on mental well-being raised the interest in integrating measures such as the GHQ-12 in QALY optimisation applications. An increasing number of studies tried to map relations between EQ-5D and non-preference-based measures, but few have looked into the concepts being measured to check the legitimacy of mapping. Concepts such as HRQoL and mental well-being are vaguely defined in health outcomes research and there is no agreement on their definitions and measurement. In this work, we aimed to understand to what extent the items of EQ-5D and GHQ-12 associate with each other. The second aim was to distinguish the constructs of concepts including health, quality of life and mental well-being, which are vaguely defined and often used interchangeably. We used complete data of 12701 respondents, with a mean age of 55.6 years (SD 14.2) and of which 66.1% were women, participating in Wave 46 of the Great Corona Study in Belgium, in 2022. Individual-level socio-demographic covariates, EQ-5D-5L, GHQ-12 and overall life satisfaction were used for analysis. Pearson correlation coefficients between the total scores and Spearman’s rank correlation coefficients between each item of the measures were calculated. Multidimensional scaling (MDS) and exploratory factor analysis (EFA) were performed to investigate the underlying constructs that are associated with the items of EQ-5D and GHQ-12. Regression models were developed to further assess associations between EQ-5D and GHQ-12 responses, while the five dimensions of EQ-5D, EQ-5D utility scores, and EQ-VAS were treated as dependent variables and GHQ-12 items were independent variables. Despite a moderate correlation (0.39) between the EQ-5D utility scores and GHQ-12 total scores, only a trivial or small correlation (<0.3) was observed between the first four EQ-5D items and all GHQ-12 items, while EQ-Anxiety/Depression had a small to moderate correlation with GHQ-12 items (between 0.27 and 0.5). MDS suggested the first four EQ-5D dimensions were clustered together with EQ-VAS, positively-phrased GHQ-12 items were close to each other, while EQ-Anxiety/Depression and negatively-phrased GHQ-12 items were grouped with satisfaction. The results of EFA can be interpreted similarly. In the regression models, although the aggregate GHQ-12 score correlated significantly with EQ-5D utility scores and VAS, not all GHQ-12 items had a meaningful coefficient (ie. significant, non-zero, and/or without a reversed sign) to predict EQ-5D responses, after controlling for relevant socio-demographic variables. This study explored the constructs of HRQoL and mental well-being. The results showed that GHQ-12 can only partially predict the responses of EQ-5D, thus, mathematical algorithms trying to directly estimate EQ-5D-5L scores from GHQ-12 scores will result in the loss of information and may therefore be conceptually problematic. Further research is required to elaborate on whether it would be conceptually appropriate to use alternative ways to derive EQ-5D changes from (partial information) in GHQ-12 changes. | Zhuxin Mao | Descriptive Systems | 16980 | Ongoing | 2023 | 2023 |
| 1604-RA | Population health impact of the COVID-19 pandemic (POPCORN): fourth wave | This research proposal concerns Wave 4 of the Population health impact of the COVID-19 pandemic (POPCORN) study as further indicated with POPCORN-W4. The POPCORN study is a longitudinal study which investigates the effects of the COVID-19 pandemic on health-related quality of life (HRQL) of the general population and examines the role of socio-economic status and other individual level determinants of HRQL, and policy factors at the national level. The study design permits cross-sectional analysis and individual repeat data analysis. New in the POPCORN-W4 data is that more emphasis is on national level analysis; consequently we will collect data related to (geopolitical) events that may induce mental and physical health problems in the general population and increase health inequalities. The aims of POPCORN-W4 study are to (1) assess HRQL, measured by EQ-5D-5L, three years after the start of the COVID-19 pandemic of the persons from the general population of six countries and investigate country level (CF) and individual (IF) factors associated with lower HRQL; (2) assess change in HRQL among 3 strata: (a) COVID-19 patients, (b) patients with specified chronic condition(s), and (c) healthy participants and investigate CF and IF factors favoring positive change; and (3) Identify distinct trajectories in EQ-5D-5L over a three year period, describe the characteristics of individuals within each distinct trajectory using latent class analysis. Methods: a web-based survey among respondents of POPCORN-W1; we expect about 35% response from W1. Deliverables: Two scientific papers and a presentation at the EuroQol Plenary/Academy meeting/Health Inequalities Special Interest Group (HISIG). | Juanita Haagsma | Populations and Health Systems | 131551 | Ongoing | 2023 | 2025 |
| 1583-RA | Testing the ordinal relationship between TTO utilities and the ranking of EQ-5D health states : examining the commensurability of preferences in the MVH dataset | Estimation models based on 5L valuation study data combine data from DCE and TTO in a single "hybrid". This approach is not what was intended when the EQ-VT protocol was initially specified. As originally planned, DCE responses would enable the creation of a set of latent scale values for 5L states, with these being transformed to the conventional 0-1 format using TTO preferences. The combination of DCE and TTO preferences relies on a critical assumption - that they are commensurate and in effect, measure the same construct. Unfortunately, the EQ-VT protocol does not collect data that allows us to test this property. Luckily, the original MVH protocol enables us to precisely target the problem. Despite being based on the analysis of 3L preferences, the (definitive) UK 3L valuation study provides an ideal benchmark for the investigation of respondent-level ordinal consistency. The proposed study will examine the extent to which the rank order of EQ-5D health states as explicitly determined by each respondent, is consistent with the ordering of the SAME states as inferred from the TTO values subsequently assigned to them. | Paul Kind | Valuation | 20000 | Ongoing | 2023 | 2024 |
| 1602-RA | The effect of perspective, duration and views on life after death on valuation of severe states of EQ-5D-Y-3L | Objectives Prior research has shown that the composite time trade-off (cTTO) utilities vary with perspectives as adults tend to assign lower utilities to severe health states when they value health states for themselves (self-perspective) compared to valuing health states for children (proxy perspective). Utilities may also depend on the exact framing of the proxy perspective, i.e., whether adult respondents decide for a child (proxy 1 perspective) or when they imagine what a child wants (proxy 2 perspective). Such discrepancies may lead to health states being better than dead (BTD) under one perspective, yet worse than dead (WTD) under another. It has been suggested that unwillingness to trade-off life years for children explains these results, yet this would only affect methods that include duration (i.e., cTTO). We investigate whether the (inclusion of) duration of health states influences individuals’ propensity to value a health state WTD or BTD when taking different perspectives. We also explore the relation between religious beliefs and the willingness to consider states WTD. Methods We integrated ranking tasks with a paired comparison task, employing the BTD method (i.e., respondents were asked to choose between a health state lasting for a specific time and death) in an online sample recruited from the UK public through Prolific. To capture a wide range of beliefs about the afterlife, participants were sampled in groups of equal size on whether they were religious or not and asked about attitudes towards death and euthanasia. These discrete choices were contextualized with 3 different perspectives (adult-own, proxy 1 and proxy 2), 5 different health states described in terms of the EuroQol EQ-5D-Y-3L classification system (21111, 22222, 23333, 33323, and 33333) and 4 different durations (1 year, 5 years, 10 years, and 20 years). Results Our results indicate that in the ranking task without duration, there is no difference in valuing severe health states WTD, regardless of perspective or religious belief. Within the paired comparison task, increasing the duration leads to a substantial rise in the percentage of participants who consider severe health states WTD across all perspectives, with a notably higher tendency in the non-religious group. We confirm the previous finding that health states are more favored over death in proxy 1 than in the self-perspective in both groups. We also observe that people are more likely to choose death over a health state when they agree more with euthanasia and when durations are longer (10 and 20 years). Religious beliefs are found to have a negative significant correlation with choosing health states WTD. Conclusion Overall, duration, religion and opinions on euthanasia influence tendencies to value a health state being BTD or WTD under both self and proxy perspectives. QALY anchored utility may be duration dependent and future research is encouraged to take into account religion in sampling. | Arthur Attema | Valuation, Youth | 38990 | Ongoing | 2023 | 2024 |
| 1561-RA | EQ-5D as an add-on generic measure in psoriasis, when excellent disease-specific measures are present: its psychometrical and clinical value in a representative Swedish cohort | **Background** Psoriasis is a chronic, immune-mediated, inflammatory disorder affecting the skin and other organs. As a systemic disease, psoriasis can have a severe negative impact on health-related quality of life (HRQoL). The Psoriasis Area and Severity Index (PASI; clinical) and Dermatology Life Quality Index (DLQI; patient-reported) are widely used instruments for measuring psoriasis severity. However, these methods may be insensitive to the generic impact of psoriasis on HRQoL. We tested whether the generic instrument EQ-5D provides evidence on addressing this limitation. **Objective** To determine whether the generic EQ-5D-3L (mobility (MO), self-care (SC), usual activities (UA), pain/discomfort (PD) and anxiety depression (AD) covers additional information in psoriasis patients compared to disease-specific instruments (PASI and DLQI). **Method** The Swedish National Quality Register for Systemic Treatment of Psoriasis (PsoReg) is a national register for systemic treatment (synthetic or biological systemic drugs) of moderate to severe psoriasis. All patients included between 2006 and 2022 were incorporated in the present study. Spearman rank correlations (summary scores, domains/items) and exploratory factor analysis methods were used to assess to what extent the PASI, DLQI and EQ-5D-3L measure the same, or different, constructs and which components of the EQ-5D, if any, provide additional information. **Results** In total, 16 887 patients were identified at baseline. Cross-sectionally, a moderate association was found between the PASI score and the DLQI summary score (rank correlation 0.51). The DLQI summary score was moderately correlated with the EQ LSS (0.55) and the EQ index (-0.58). The association between the PASI and the EQ LSS was moderate (0.26) as was between the PASI and the EQ index (-0.26). At the domain level association of the EQ-5D with the DLQI domains was stronger (range 0.13-0.46) as with the PASI domains (0.01-0.17). By applying factor analysis to the pooled items of the PASI, DLQI, and EQ-5D, a six-factor solution was found to be the best and most parsimonious. All DLQI items plus the AD domain of the EQ-5D were represented by the strongest factor (factor I), with high inter-item correlations. The remaining four EQ-5D items (MO, SC, UA, PD) together represented the second factor (factor II). The PASI items were grouped into the four different factors (factor III-VI) according to body location (arms, legs, head, and trunk), with no overlap with the EQ-5D or DLQI. EFA were also performed for the split data, according to the severity of PASI score (mild, moderate, severe), and loading pattern was similar to the entire sample results. Additionally, we included age, sex, BMI, alcohol and tobacco consumption, and psoriasis-arthropathy in the model, the loadings of the DLQI, PASI and EQ-5D items were similar to what was observed in the previous models. Age, sex and lifestyle variables loaded weakly mainly onto factors I and II, except that smoking also loaded on factor III (PASI items related to induration and scaling at the leg and arms area). The items related to psoriasis-arthropathy were loaded moderately onto factor II. **Conclusion** This study shows that the PASI, DLQI and EQ-5D-3L cover different constructs: the PASI describes skin lesions, the DLQI describes experienced disturbance in general (despite the specific items), and the EQ-5D describes the impact on five HRQoL domains, of which mood (EQ-5D-AD) coincides with the DLQI. The three instruments provide largely different, yet valuable information about patients with psoriasis: the DLQI proves that personal disturbance goes beyond skin extension, while the EQ-5D shows that psoriasis impacts multiple domains of HRQoL beyond this disturbance. Therefore, the three instruments should be employed as complementary measures. Our study confirms the need to combine a generic instrument with a condition-specific instrument for measuring HRQoL. | Sun Sun | Descriptive Systems, Populations and Health Systems | 24975 | Completed | 2023 | 2024 |
| 1574-RA | Alternative approach to value set construction – accounting for interpersonal utility comparisons taboo based on axiomatic approach | Background Interpersonal utility comparisons are challenging. Meanwhile, in health valuation studies, the utilities elicited with time trade-off method (TTO) are simply averaged, somewhat thoughtlessly. Such averaging is theoretically unfounded and it violates the relative preference inversion property (RPI). A recent solution, using relative utilitarianism approach, addresses this problem but violates the independence of irrelevant alternatives property (IIA). Aim I aimed to propose a health state utility aggregation method preserving the RPI and IIA. Methods In the economic literature, it was shown that for strictly positive and ratio-scale measurable utilities, geometric mean should be used to aggregate preferences. I show how to adapt this approach to health valuation by calculating the geometric mean of disutilities relative to 11111 (non-trading is assumed to result from limited granularity of TTO). I estimate a new value set for Polish EQ-5D-5L valuation study TTO data. Results The proposed method has the RPI and IIA, however, it violates the unanimity for risky prospects. The estimated level 5 disutilities amount to: 0.19 for mobility, 0.19 for self-care, 0.141 for usual activities, 0.478 for pain/discomfort, and 0.175 for anxiety/depression. The estimated value for 55555 amounts to −0.174, as compared to −0.392 for the standard approach and to −0.106 for the relative utilitarianism approach. Conclusion The challenges of interpersonal utility comparison are largely neglected in valuation studies. Theoretically sound methods are available in the economic literature and can be applied to valuation studies. Correctly addressing the interpersonal utility comparisons reduces the range of utilities. | Michał Jakubczyk | Valuation | 19400 | Completed | 2023 | 2023 |
| 1582-RA | Discrepancies between EQ-5D-5L self- and proxy ratings in dementia | Background: Health-Related Quality of Life (HRQoL) has become an important parameter in dementia research, emphasizing the importance of valuing the perspective of patients with dementia (PwD). PwDs cognitive decline affects the validity of self-ratings. Therefore, proxy-proxy ratings by informal caregivers are commonly used, which however often result in discrepancies between both ratings. To date, discrepancies between EQ-5D-5L self- and proxy-proxy ratings, associated factors, and their stability over time have not been analyzed to full extent. Inconclusive evidence to what extent differences between self- and proxy-proxy ratings affect the prediction of objective adverse events, like hospitalizations, is also missing. Aim of research: To examine discrepancies between EQ-5D-5L self- and proxy-proxy ratings in dementia and analyze associated factors explaining the impact on variations and objective adverse events. Proposed methods: The analysis will be based on data from n= 246 PwD and n=246 caregivers of a cluster-randomized, controlled intervention trial (InDePendent) initiated in 2020 in Germany. Self and proxy-proxy EQ-5D-5L and EQ-VAS versions were administered at baseline and six and twelve months after baseline, resulting in n=662 self- and n=662 proxy-proxy assessments. Descriptive analyses (distribution of responses, ceiling and floor effects) and different methods of agreement (Cohen's Kappa, Intra Class Correlation) will be used to describe discrepancies between self- and proxy-proxy ratings on the dimension level, index and VAS. We will use multiple linear and panel data regression to assess socio-demographic (age, sex, education, living situation, working status caregiver) and clinical factors (patients' mobility, activities of daily living, depression, unmet care needs and healthcare utilization, and caregivers' burden and time spent on informal care) associated with the discrepancy between self- and proxy-proxy ratings. Multiple logistic regression analyses will be used to assess the predictive validity of both ratings on subsequent adverse objective health events (institutionalization, hospitalization, care grade increase, and other healthcare utilization). Benefits to the group: The proposed study will extend the knowledge about the impact of the administration of the EQ-5D-5L self- and proxy-proxy version in dementia by adding new evidence about the discrepancies between both ratings. We will provide evidence on factors influencing these discrepancies over time, by identifying predictors of differences between both versions. Finally, results will demonstrate if the EQ-5D-5L self- or proxy-proxy ratings have a higher predictive validity on objective adverse health events and outcomes, which is important information for the administration of the EQ-5D-5L in future research in dementia. | Maresa Buchholz | Descriptive Systems | 24700 | Ongoing | 2023 | 2025 |
| 1578-RA | Redundancy in HRQoL algorithms: conceptual and empirical challenges | Objectives: Providing policy makers with value sets is a crucial part of EuroQol’s work and enables our instruments to be widely used in HTA and other settings. However, given the long history of EuroQol’s work, and the number of existing valuation studies, many of our value sets are now old, based on potentially outdated valuation methodology, and in popu-lations which no longer represent the contemporary population. Assuming EuroQol wants a role in endorsing approved value sets - or at least a way of identifying priorities for in-vesting in new value sets - having a clear strategy for identification and mitigation of re-dundancy is important to ensure policy makers retain confidence in their country-specific value sets. Methods Through discussion and iteration with our international authorship team, we have constructed a taxonomy of redundancy. We have explored how the different types of redundancy might be identified, and how the EuroQol group might work with local policy makers to address redundancy, and therefore ensure our instruments remain relevant for use. Results The taxonomy of redundancy consists of four main areas, based on both redundancy and obsolescence. These are that the value set no longer aligns with current normative HTA requirements; that the methods used to generate it are no longer considered robust or adequately close to best practice; that the population composition has moved too far from the population in which the original value set was derived; and that, even after controlling for population differences, preferences are likely to have changed since original data collection. Through identification of the type of redundancy that applies in a particular setting, we then suggest a range of possible solutions to each, ranging from recommending particular sensitivity analyses, through reweighting of existing data to better account for population differences, to collecting new data for an updated value set. Conclusion: Redundancy of existing value sets is driven by more than just time since data collection and is often a matter of judgment rather than based on a clear definition. Working closely with local policy makers, in manner appropriate to the local environment, to discuss the ongoing appropriateness of existing value sets is an important part of EuroQol’s ongoing role, and includes the consideration of updating value sets in contemporary populations using current best-practice methods. However, the benefits of updating value sets has to be balanced against the desire of policy makers for consistency in their local decision-making processes. | Richard Norman | Valuation | 39750 | Ongoing | 2022 | 2024 |
| 1566-RA | Examining the psychometric performance of the EQ-HWB in caregivers of persons living with dementia. | Introduction The EQ Health and Wellbeing (EQ-HWB) is a generic new instrument developed internationally to use in evaluating interventions across health, public health, and social care, and enabling the inclusion of impacts on caregivers. Evaluations of the instrument’s performance in a range of informal caregiver populations is now needed. We know that for caregivers of people living with dementia, providing informal care can significantly impact their health and wellbeing; whether the EQ-HWB is able to capture these impacts remains unclear. Using data collected through an Australian study of caregiver quality-of-life, this project aimed to investigate the psychometric properties of the EQ-HWB in caregivers of persons living with dementia. Method An online survey was developed which included demographic questions, informal care-related questions, and a range of quality-of-life measures suitable for caregivers (C-DEMQOL and CarerQol) as well as the 25-item EQ-HWB. The psychometric properties of the EQ-HWB and EQ-HWB-S (9-item short form) were assessed for acceptability (missing data), distribution (ceiling and floor effects), known groups and convergent validity analysis, and an exploration of dimensionality using exploratory factor analysis. Results Whilst some items were highly skewed, there were no floor or ceiling effects for either EQ-HWB instrument (answers to all items were at lowest (ie 111111111) or highest response level (ie 555555555)). Caregivers chose the two most severe responses for exhaustion (34.7% of responses were in the two most severe response categories, often or most/all of the time) and loneliness (25.7%)). In known group validity analysis, both EQ-HWB instruments performed well against the C-DEMQOL and CarerQol in terms of effect sizes (Cohen’s d and Eta-squared); however, the C-DEMQOL had higher effect sizes for dementia severity, and shared caregiving. At the item level, 13 of the 25 items were significantly different between groups when comparing caregiving time (2-groups), and 23 of 25 items were significant when comparing general health (2-groups). Most hypothesised correlations in convergent validity analysis were found to be above 0.3. Four items failed to load on to the EFA model (seeing, hearing, sleep, exhaustion), of which only exhaustion was from the EQ-HWB short form. Conclusion Our results suggest that the EQ-HWB instruments, both as sum-scores and index-scores, performed well in this population. | Cate Bailey | Descriptive Systems, EQ-HWB | 24540 | Completed | 2023 | 2024 |
| 1600-RA | Population norms and inequalities based on EQ-5D-5L general population surveys (POPS 2): Pilot on Methodology | The co-investigators of the POPS 2 pilot will pursue the full POPS 2 project after the pilot demonstrated feasibility for obtaining appropriate datasets and the inclusion of sufficient socio-economic information within these datasets. In this second pilot project, we propose to conduct the necessary preliminary work to review methods for standardizing EQ-5D norms across countries and approaches to inequality assessment. The aims are to: (1) Identify standardized reporting of population norms for EQ-5D-5l datasets; (2) Reviewing and select inequality measures to be used in the main project; (3) Drafting tables and data presentation to use in the main POPs 2 study; and (4) Execute a pilot analysis on 1 to 2 country datasets. The results of this project will directly be used to create the planned EQ-5D-5L population norms booklet, which has been the overarching aim of the overall POPS 2 project. Furthermore, investigating the methodology for cross-country comparisons (aims (1) and (2)), especially pertaining to inequality assessment, is expected to generate other research topics for members of the Health Inequalities Special Interest Group (HISIG). Additionally, this pilot will cross-collaborate with other EuroQol funded population level projects which also expressed interest in assessing inequalities. As the limited pilot project seeks to use only 1 to 2 datasets, it can be conducted relatively easily. The finalized method from aims (1) to (3) (including any syntax that can be produced) will be tested on 1 to 2 easily obtainable datasets identified from the POPS 2 pilot. | You-Shan Feng, PhD | Populations and Health Systems | 25000 | Ongoing | 2023 | 2024 |
| 1591-RA | A Systematic Scoping Review to Sythesise Evidence on Health-Related Quality of Life Measures in Africa | Despite widespread promotion and documentation of the use of health-related quality of life(HRQoL) measures in policy planning and resource allocation, evidence from low-income settings, particularly in Africa, is limited. The aim of this review is to summarise the available evidence on the use of HRQoL measures to date. Specifically, to i) synthesise the available evidence on the types of HRQoL measures used; ii)understand the rationale for selection and extent of use of HRQoL measures in clinical practise, clinical trials, industry, and health technology assessment; and iii) describe the key characteristics of different studies, including their recruitment, populations, data collection methods, and use of other variables/measures. A systematic search of literature will be conducted in five databases using pre-determined keywords (Medline, Embase, CINAHL, PsycINFO, Scopus). A grey literature search, and hand searching of reference lists from the included studies will be carried out. Data on study characteristics and HRQoL measures will be extracted using a customised data charting table. The general characteristics of studies and HRQoL data will be analysed using descriptive statistics and thematic analysis. The findings will be presented in the form of tables and narrative summary. The current study will provide evidence on the use of HRQoL measures in low-income settings, as well as highlight EQ-5D performance, utilisation, and application challenges. This will contribute to the instruments’ global applicability. Furthermore, by providing population and unique country characteristics, types of data and optimal modes of collection, EQ-5D application areas, and end-users, it will be used as baseline evidence to design large-scale population level studies across Africa. | Begashaw Melaku Gebresillassie | Populations and Health Systems, Education and Outreach | 22200 | Ongoing | 2023 | 2024 |
| 1596-RA | Getting personal: scoping the potential of using OPUF to develop an EQ-5D-5L-based a decision aid for routine clinical practice | The EQ-5D-5L is the most widely used generic measure of health-related quality of life; it is commonly applied in health economic evaluations and population health surveys to inform policy decision making. However, despite its widespread use, the EQ-5D-5L is generally not used in clinical practice on the individual patient level. A major barrier for use in routine care is the lack of an easy way to summarise and convey the complex information contained in EQ-5D-5L health states. It would be inappropriate to apply a social value set to an individual patient, since the preference weights would not reflect the patients’ view of what aspects of their health are most important to them . Other methods for summarising changes on the five dimensions are also not patient-centric: the level sum score is too crude, and psychometric methods would still rely on group-level statistical analyses. None of these are meaningful to any single patient reporting their EQ-5D health state profile. A newly developed health valuation method, called Online elicitation of Personal Utility Functions (OPUF) approach, has the potential to overcome this barrier. The OPUF approach can generate personal EQ-5D-5L value sets, for each respondent. In principle this would allow patients to both self-report their health on the EQ-5D-5L, and (using OPUF) to communicate which aspects of their health problems are most important in determining their overall health related quality of life, from their own perspective. This can provide important information of relevance to decisions to treat, and choices between treatments, allowing clinicians to better understand which health problems are most bothersome to patients, and how side effects of treatments can impact their HRQoL. It might allow summarising changes in health states over time in terms of (personal) utility, which may help patients to better understand the EQ-5D-5L and the trade-offs they face in making treatment decisions. This line of research is in its very early stages. We thus propose a small research project with limited scope, to map opportunities, barriers, stakeholders, potential use cases, etc. For this, we will conduct a targeted literature review, and semi-structured expert interviews. Findings will be summarised in a (future-state) patient journey map, and used to inform an internal discussion and a roadmap for further research for consideration by the Executive Committee. | Paul Schneider | Valuation, Populations and Health Systems | 21880 | Ongoing | 2023 | 2023 |
| 1585-RA | Making composite time trade-off method sensitive for worse-than-dead states | Objective The utility values elicited with composite time trade-off method (cTTO) for health states worse-than-dead (WTD) correlate poorly with other measures of state severity. Various explanations for this lack of sensitivity have been put forward in the literature. We aimed to explore if various modifications of cTTO influence the correlation between utility and severity to better understand the reasons for the lack of sensitivity and identify possible methods for improvement. Methods A total of 480 respondents completed an online TTO interview, valuing 12 EQ-5D-5L health states. The respondents were randomly split into four arms, A--D. Arm A served as the benchmark and followed the cTTO implementation for EQ-5D valuation studies. Notably, cTTO has three characteristics. First, it uses two choice tasks to identify whether a given health state is WTD (henceforth, sorting questions): 1) a comparison of living for 10 years in this state with immediate death; 2) an analogous comparison with 10 years in full health added to both alternatives. Second, the lead-time TTO (LT-TTO) part of cTTO used for WTD states censors the utility values at -1. Third, the first negative utility value offered in LT-TTO amounts to -0.5. In arm B, we removed the first sorting question. In arm C, we allowed for utility values <-1 by reducing the time in the valued state in the choice task. In arm D, we randomized the starting negative utility between -0.2, -0.4, -0.6, and -0.8. We compared the distributions of elicited utilities, inspected the association between utilities and level sum score (LSS) using linear regression, and assessed the proportion of inconsistencies between logically ordered states at the individual respondent level. We assessed the impact of selected personal characteristics, including religiosity and numeracy skills. Results Arm A replicated the lack of a statistically significant association between LSS and negative utility. In arm B, a statistically significant negative association emerged (slope =-0.018), while it remained absent in arms C and D. In arm A, the negative association seemed to emerge for respondents with above-average numeracy skills or those non-religious, yet remained non-significant (however, p-values <0.1). Arm B resulted in greater proportion of states being WTD than arm A (46.5% vs 26.3%) and slightly fewer inconsistencies (3.7% vs 5.7% for better-than-dead states, and non-significant 10% vs 12.1% for WTD states). Arm B also yielded a slightly lower utility for the 55555 health state than arm A in the estimated value set: -0.588 vs -0.479. Conclusion The observed lack of correlation between LSS and utility for WTD states appears linked to the sorting question using the immediate death comparison. LT-TTO is capable of eliciting utility values in a way that is sensitive to severity. However, when only very severe states are considered WTD and subject to LT-TTO, this sensitivity is compromised. Dropping the first sorting question in cTTO could be considered. | Michał Jakubczyk | Valuation | 89500 | Completed | 2023 | 2024 |
| 1575-VS | Valuation of the EQ-5D-Y-3L in Poland | **Background:** In the Polish health technology assessment guidelines (AOTMiT 2016), the EQ-5D questionnaires are preferred instruments to calculate quality-adjusted life years (QALYs). Poland has national value sets for both adult versions of the EQ-5D. However, no value set exists for the EQ-5D-Y, what limits its use in HTA. **Objectives:** To produce EQ-5D-Y-3L value set for Poland based on preferences of the general adult population. As a secondary objective, we aim to explore the impact of modifications of cTTO protocol (change of the sorting question) on the discriminatory power of LT-TTO and the face validity of the negative utilities. **Methods:** We will follow the international EQ-5D-Y-3L valuation protocol including discrete choice experiment (DCE) and composite time trade-off (cTTO) tasks. The EQ-VT software will be used to collect data by computer-assisted personal interviews (200 respondents – standard cTTO and 100 respondents – experimental cTTO) and an online panel survey (1000 respondents, DCE). For both surveys, a non-probability quota sampling will be used. For DCE survey quotas will be set for age, gender, geographical region, size of town, level fo education to reflect the composition of the Polish general population. **Expected results: ** We expect that directly measured EQ-5D-Y-3L value set will strengthen the position of EQ-5D as a leading and officially recommended utility measurement instrument in Poland. | Dominik Golicki | Valuation, Youth | 58597 | Ongoing | 2023 | 2025 |
| 1572-RA | Acceptability, validity and responsiveness of the EQ-5D-3L in people with multiple sclerosis: A psychometric analysis of data from the UK MS Register | Objectives Concerns have been raised about the validity and responsiveness of the EQ-5D in the context of multiple sclerosis (MS), however empirical evidence is limited. This research aims to assess the acceptability, validity and responsiveness of the EQ-5D-3L compared to an MS-specific utility measure, the Multiple Sclerosis Impact Scale Eight Dimensions (MSIS-8D), in people with MS. Methods Analysis was undertaken using data from the UK MS Register (UKMSR), a prospective, longitudinal, cohort study with over 10,000 participants. We evaluated and compared the EQ-5D-3L and the MSIS-8D in terms of acceptability, distributional properties, informativity, convergent and discriminative validity, and responsiveness. The responsiveness analysis investigated changes in EQ-5D-3L and MSIS-8D values before and after (i) commencement of disease-modifying treatment and (ii) onset of new symptoms; and (iii) between time-points with/without a contemporary relapse. Results Of those who provided any data on the UKMSR core survey instruments in spring 2023, 3.14% did not complete the EQ-5D-3L and 8.57% did not complete the MSIS-8D. The ceiling effect for the EQ-5D-3L was 11.13%, compared to 4.62% for the MSIS-8D; floor effects were negligible for both measures. In the informativity analyses, health state density indices (MSIS-8D = 0.577; EQ-5D-3L = 0.215), Shannon Indices (MSIS-8D = 6.978; EQ-5D-3L = 3.393) and Shannon Evenness Indices (MSIS-8D = 0.926; EQ-5D-3L = 0.719) were higher for the MSIS-8D than for the EQ-5D. The EQ-5D-3L and MSIS-8D both correlated strongly (rho > 0.5) with measures of disability, fatigue, walking impairment and depression, and moderately (rho > 0.4) with anxiety. Both measures discriminated significantly (p 0.2. Symptom onset resulted in statistically significant reductions in utility values for the EQ-5D-3L (mean change -0.023 p = 0.0370, SRM -0.099, SES 0.073) and MSIS-8D (mean change -0.022; p = 0.0036, SRM -0.140, SES 0.119). However, both failed to meet the threshold for a meaningful change. Neither measure appeared responsive to DMT initiation (p > 0.05). Conclusion Both measures exhibited good convergent and discriminative validity. While the EQ-5D-3L demonstrated greater acceptability, the MSIS-8D exhibited greater informativity. Although the MSIS-8D appears to offer greater responsiveness compared to the EQ-5D-3L, the responsiveness of both measures in this analysis was limited, underlining existing concerns about the ability of utility measures to fully capture treatment effects in MS. Further research is required to determine the psychometric properties of the EQ-5D-5L in the context of MS. | Elizabeth Tompkins (known as Elizabeth Goodwin) | Descriptive Systems | 24941 | Ongoing | 2023 | 2024 |
| 1507-VS | Completion of the Covid-stranded Norwegian EQ-5D-5L valuation study | Purpose: To develop the Norwegian value set for the EQ-5D-5L based on interviews with a representative sample of the Norwegian adult population. Methods: Random and quota sampling were used to recruit the sample of adults (age > 18 years) representative of the Norwegian general population. Data collection followed EQ-VT 2.1 undertaken before and after the COVID-19 pandemic from November 2019 to December 2022, using PC-assisted and video conferencing interviews, respectively. Each respondent valued 10 health states using composite time trade-off (cTTO) and 7 health states using a discrete choice experiment (DCE). Different statistical models were assessed for logical consistency and predictive accuracy using cTTO and DCE data alone or in combination as hybrid models. Results: Of the 1,321 respondents, 1,237 met inclusion criteria. All statistical models demonstrated logical consistency. The weighted hybrid model combining both cTTO and DCE data was preferred and had the highest predictive accuracy. Predicted values ranged from - 0.453 to 1, and the dimension of anxiety/depression was the most highly valued by respondents, followed by pain/discomfort, self-care, mobility, and usual activities. These findings are not dissimilar to those for most Western European countries, and regression coefficients are closest to those for other Scandinavian countries. Conclusion: This study provides the Norwegian value set for the EQ-5D-5L based on health state values obtained from members of the adult general population in Norway. This is an important contribution to economic evaluation and the broader application of the EQ-5D-5L in Norway including clinical and health services research, and quality measurement. | Kim Rand | Valuation | 49000 | Completed | 2022 | 2024 |
| 1504-RA | Testing EQ-5D-5L bolt-ons in patients with sleep & sleep breathing disorders: an exploratory study for making EQ-5D a clinically attractive patient-reported outcomes measure. | Background: The EQ-5D-5L may not adequately capture the health-related quality of life (HRQoL) of patients with sleep disturbances. We examined whether the addition of four sleep-related bolt-ons could enhance the psychometric properties of EQ-5D-5L. Methods: We employed a mixed methodology involving in-depth interviews with 23 patients and clinicians to test the face validity of “sleep”, “cognition”, “tiredness” and “relationship” and refine the bolt-ons. We then administered the four bolt-ons, appended to EQ-5D-5L, together with three condition-specific patient-reported outcome measures (cPROMs), i.e., Sleep Apnea Quality of Life Index (SAQLI), the Functional Outcome Sleep Questionnaire (FOSQ) and the Pittsburgh Sleep Quality Index (PSQI) questionnaires during two clinical visits. We compared ceiling effects and construct validity by testing a priori hypotheses in relation to the cPROMs and polysomnographic characteristics via correlation and areas under the curves (AUC) analyses, respectively. We examined responsiveness among “treated/improved” participants using standardized response means (SRM) and AUC analysis, and reliability among “untreated/no change” participants using intra-class correlation coefficient (ICC) or Cohen’s Kappa (k). Results: 110 participants (mean [SD] age: 47[13]) were recruited of 90 returned for their review assessments (mean [SD] interval: 2.2 [2.1] months). The absolute ceiling reduction was 42.7%. The bolt-ons were better correlated with cPROMs and possessed higher discriminatory power and responsiveness, with comparable reliability to EQ-5D-5L. A combined module of the four bolt-ons provided better results than individual bolt-ons. Conclusions: Adding the four sleep-related bolt-ons improved EQ-5D-5L’s psychometric properties among patients with sleep disturbances. | Nan LUO | Descriptive Systems | 55860 | Completed | 2023 | 2024 |
| 1481-PHD | Incorporating informal carers' quality of life in health economic evaluation using the EQ-5D | While, traditionally, economic evaluations considered the costs and benefits of the person receiving care only, recent international guidelines on conducting economic evaluations recommend including costs and benefits of informal carers when adopting a societal perspective. In the UK, the ‘Health-Related Quality of Life Task & Finish Group’ (HRQOL T&F group) that was initiated by the National Institute for Health and Care Excellence (NICE) put together a set of ‘minimum evidence requirements’, recommending that carer quality of life (QoL) should be measured using the EQ-5D. Given these recent developments, there is an urgent need for further research, examining how carer QoL can be included in health economic evaluation using the EQ-5D. This requires the assessment of the appropriateness of the EQ-5D in capturing caregiving impacts when compared with other QoL measures. Additionally, incorporating carer outcomes, also referred to as ‘spillover effects’, into health economic evaluation requires further investigation into the extent of potential ‘double-counting’. It has been argued that spillover effects may already be implicitly included in patient’s utilities. Finally, there are challenges in combining ‘carer QALYs’ and ‘patient QALYs’ in an economic evaluation that requires further research. The aim of this PhD research program is to address current methodological issues concerning the inclusion of carer outcomes in health economic evaluation using the EQ-5D tools. This ambitious program of research will address the following research questions: (1) What is the psychometric performance of the EQ-5D tools in capturing carer outcomes for use in economic evaluation? (2) What is the extent of double-counting when including carer outcomes in economic evaluation using the EQ-5D? (3) Should ‘carer QALYs’ be weighted differently than ‘patient QALYs’ in economic evaluation? A systematic literature review will be undertaken, examining the performance of the EQ-5D tools in capturing carer outcomes. Additionally, a secondary data analysis will be conducted, assessing the psychometric properties of the EQ-5D-5L in informal carers in Australia. The extent to which members of the general public consider spillover effects when valuing EQ-5D health states will be examined in a time trade-off exercise, supplemented with some think-aloud interviews. Finally, an online survey, comprising a person trade-off exercise, will be administered to a representative sample in Australia, assessing whether the general public assigns different weights to ‘patient QALYs’ and ‘carer QALYs’ The PhD student will be based at Monash University within the School of Public Health and Preventive Medicine, supervised by EuroQol member Dr Lidia Engel. Additional supervisory support will be provided by Prof Cathy Mihalopoulos (Monash University) to meet Australian University guidelines around supervisory panels. | Lidia Engel | Descriptive Systems, Valuation | 101000 | Ongoing | 2023 | 2027 |
| 1517-RA | EQ-5D for proxy assessment of nursing home residents: A systematic review of feasibility and measurement properties | Objectives: The accurate assessment of Health-Related Quality of Life (HRQoL) in residents of residential care facilities (RCF) necessitates the use of proxy-reported instruments that possess robust psychometric properties. Generally, these instruments are modified versions of self-reported tools, with adjustments made to pronouns and instructions to better suit the respondent. Among such tools, the EQ-5D has emerged as a prominent instrument for evaluating HRQoL within RCF settings. This review aimed to synthesize evidence on psychometric properties of the proxy version of EQ-5D. Design: Systematic review and meta-analysis. Setting and Participants: Residents in RCF. Methods: An extensive search was conducted across 8 databases, covering articles from inception to May 29, 2023. We included a total of 20 articles reporting data that can be used to evaluate psychometric properties of this instrument in RCF. The quality appraisal employed the COSMIN Risk of Bias checklist, and data synthesis followed COSMIN methodology. Results: Most of the included studies were conducted in Europe, with 75% using nursing staff as proxies. Missing data rates were 5% for EQ-5D and 26% for EQ VAS. Evidence of moderate certainty on construct validity of the EQ-5D index was inconsistent, although the EQ VAS showed sufficient construct validity supported by high certainty. EQ-5D index responsiveness evidence was limited, characterized by low certainty and inconsistency. Proxy-resident agreement ranged from poor to moderate, and improved with repeated administration for the “mobility” and “usual activities” dimensions. The lowest agreement was observed when staff served as proxies or the proxy-proxy perspective was adopted. Conclusions and Implications: This review offers an overview of the psychometric properties of EQ-5D as a proxy HRQoL measure in RCF. The suboptimal evidence on psychometric properties of EQ-5D indicated the need for more validation studies and cautious use of the instrument in RCF. | Nan Luo | Descriptive Systems | 25000 | Completed | 2022 | 2023 |
| 1534-EO | Organizing an EQ-5D-Y workshop in Asia at the ISPOR Asia Pacific Summit 2022 (a virtual event) | Substantial research efforts have been devoted to validate the EQ-5D-Y and to establish its value sets in Asia. It is also crucial to inform the users and researchers about the progress and the availability of this instrument. ISPOR Asia-Pacific Summit provides a great platform to present this instrument and its use to users and researchers from this region. After discussion, this team decided to deliver an introductory workshop to the attendees of 2022 ISPOR Asia-Pacific Summit. In this workshop, we aimed to help the users and researchers in this Asia-Pacific region to know about EQ-5D-Y and the research progress within this region. We also aimed to provide researchers practical guidance and tips on obtaining and using this instrument in their studies. The workshop entitled ‘The EQ-5D-Y(Youth) in the Asia-Pacific: What is it, how to get it, and how to use it?’ was accepted and in total, we delivered a one-hour workshop covering 4 pre-recorded pitches, two presentations and a Q&A session. The pre-recorded pitches were prepared incorporating the EuroQol whiteboard animations and were subtitled with both Chinese and English. As a virtual event, the workshop was recorded and can be played by registered attendees. After the meeting, the 4 pitches were placed online at Zhihu.com (similar to Quora, which shares knowledge), which can be accessed by researchers, students, and clinicians in China and beyond. In total, we counted 20+ live attendees and 229 hits on Zhihu.com (from 20 Sep to 05 Nov 2022). The number of attendees viewed the workshop at ISPOR was not formally recorded. | Zhihao Yang | Education and Outreach | 7680 | Completed | 2022 | 2022 |
| 1487-RA | Terror Management Theory: a new observation window on TTO and VAS | We address two issues. The first issue is the discussion about the use of TTO and VAS methods in health valuation measurement, and about the health state ‘death’ in valuation tasks. The second issue addresses the lack of interpretation of existing TTO determinants. We tackle these issues using a framework linking TTO values to Terror Management Theory (TMT), a theory describing sociopsychological defenses against death thoughts. Such thoughts are also relevant in the TTO. An intermediary value ‘prolonging life’ was proposed to link TTO to TMT defenses. Aims: In two studies, we address 1) the occurrence of death thoughts in TTO and VAS, the latter with ‘a state equivalent to dead’, 2) the relation between death thoughts on the one hand, and TTO and VAS on the other hand, 3) whether the intermediary value ‘prolonging life’ is tied to TMT defenses, and 4) the relation between the value ‘prolonging life’ in relation to death thoughts and the TTO. Methods: The validated Death Thought Accessibility (DTA) questionnaire is used, that quantifies the occurrence of unconscious death thoughts. In both studies, experimental designs from TMT are used to produce death thoughts, which are subsequently related to the TTO, VAS, or the value ‘prolonging life’. Relevance This proposal used a new observation window to investigate TTO and VAS. It promises a coherent way to think about existent TTO determinants, making ad hoc explanations unnecessary. The proposal underpins the framework linking TMT and the TTO. | Peep FM Stalmeier | Valuation | 65150 | Ongoing | 2022 | 2027 |
| 344-VS | Testing the feasibility and acceptability of the EQ-5D-Y-3L valuation protocol in adolescents and adults in Pakistan | Recently, the Youth Working Group agreed upon a protocol for the valuation of the 3-level version of EQ-5D-Y. The proposed protocol suggested a minimum of 5 health states to be valued by C-TTO, combined with DCE. The sample of respondents is drawn from adult general population and are asked to think of preference for health for children at the age of 10. In our research, the suggested protocol serves as a standard while we take additional steps to test parts of the suggested methodology. In our case, we will test to determine whether preferences elicited from adolescents differ from those elicited from adults for child health states. Furthermore, the qualitative component will be used for in-depth analysis of the preference elicitation method with a subset of the adolescent as well as adult participants to draw out key themes from the experience for comparison among the two groups. All testing of the mixed minimum C-TTO/DCE design will be done in the context of testing and strengthening the valuation protocol in the context of EQ-5D-Y-3L for Pakistani population, validation of EQ-3D-Y-3Ll Urdu version and also arriving at a value set for the EQ-5D-Y in Pakistan, thus using a representative and sufficient large sample. | madeeha malik | Valuation | 89507 | Ongoing | 2022 | 2024 |
| 1505-RA | Phase-2 study of the Global HTA Agency Survey project | Objectives: Health technology assessment (HTA) agencies routinely utilize health-related quality of life (HRQoL) data to inform healthcare decision-making. While many have published methods guides, little is known about their preferences for HRQoL evidence, and their perspectives on the quality of the HRQoL data in HTA practice. The overall aim of this study is to understand the practices, views, and needs of HTA practitioners around the world regarding measurement, valuation, and use of HRQoL data. Methods: We identified a total of 60 countries where national HTA agencies, bodies, or committees existed, and/or HTA was used to inform healthcare decision-making. Utilizing the EuroQol Group membership, we invited HTA practitioners in those countries to complete an online survey inquiring their experiences and views on: i) utility instruments; ii) utility elicitation methods, iii) health preference sources, iv) data quality and appropriateness, and v) perceived research priorities. For questions using a Likert-type response scale, we used the mode (or median if no or multiple modes) of all responses for that country, and reported the median based on all country responses. We performed descriptive analyses of the overall sample, and then we examined the response differences across six regions (Commonwealth - AU/CA/NZ/UK, Western Europe, Central/Eastern Europe, Asia, Latin America, and Middle East/Africa). We pooled responses to open-ended questions for content analysis. Results: In total, 238 individuals from 45 countries completed the survey. The mean number of responses per country was 5.28 (SD: 4.45), with Vietnam, England, and South Korea being the top three. Overall, most responses came from government employees (72%) and 90% were involved in QALY-related work. The top three most frequently used utility instruments were EQ-5D (“very often”), SF-6D, (“occasionally”) and EQ-5D-Y (“occasionally”). The top three most frequently used utility elicitation methods were TTO, VAS, and SG, all of which were “often” used. Health-state preferences of the general public of another country (“often”) was more frequently used than the preferences of the local public (“occasionally”). The data quality issues that “often” arose across regions were the poor sample representativeness and small sample size of utility data (UD), poor matching of available health state UD with those of the CEA models, and the use of UD from multiple methods/instruments in a same model. In Asia and Western Europe, the top voted research priority was to develop utility instruments to capture the health care and social care impact; in the Middle East/Africa and Central/Eastern Europe, it was to make more recent UD available; in the Commonwealth countries, the priority was to develop utility instruments to capture the impact of treatment on carers and caregivers; in Latin America, the primary interest was to develop utility instruments to address inequality in care. In four regions, utility instruments for children was the second highest research priority. Conclusion: The survey filled important knowledge gaps with regard to the current practices of measurement and valuation of HRQoL in HTA and HTA practitioners’ views on instruments, methods, and data related issues and needs for generating HRQoL evidence. | Nan Luo | Education and Outreach | 57500 | Completed | 2022 | 2023 |
| 1495-RA | A qualitative examination of the content validity of the EQ-5D in patients with Duchenne Muscular Dystrophy | This qualitative study aimed to examine the content validity of the EQ-5D in a sample of Chinese patients with Duchenne muscular dystrophy (DMD). The research team collaborated with Beijing Dear Mom & Dad DMD patient centre, China's largest DMD patient organization, to recruit participants. Thirty participants—15 adult patients and 15 children and adolescent patients—who met the inclusion criteria were invited to participate in web-based one-on-one, in-depth interviews. The interviews included concept elicitation to identify patient-perceived DMD impact, and cognitive debriefing to assess the relevance and acceptability of the EQ-5D-5L and EQ-5D-Y, respectively. Overall, DMD patients' health and quality of life were affected in three areas: physical health, mental well-being, and social relationships. Nearly all patients agreed that the EQ-5D represents most aspects affecting their quality of life, but it may lack components such as social relationships. Moreover, items related to physical health were not very appropriate for patients with DMD, which could affect the use of EQ-5D in this population, especially for adult patients. | Richard Huan Xu | Descriptive Systems | 30550 | Completed | 2022 | 2025 |
| 1530-RA | Re(re)visiting negative composite time trade-off utilities – can threshold hypothesis really save the day? | Background: To fully understand health preferences, the utilities of states worse than dead (WTD) must be measured. It is disputed how credibly such negative utilities are elicited with the composite time tradeoff method (cTTO), as these utilities do not correlate with EQ-5D-5L state severity (the insensitivity hypothesis). In spite of this, a recent explanation has been put forward in terms of the variation in the propensity of respondents to consider a state WTD (the threshold explanation). Purpose: To demonstrate that (i) the threshold explanation fails to falsify the insensitivity hypothesis and that (ii) a negative correlation should indeed be obtained if the cTTO results are sensitive to severity. Methods: Utilising data from the Polish EQ-5D-5L valuation study, I replicate the analysis behind the insensitivity hypothesis and the threshold explanation. Following this, I modify the data in two opposite ways: (A) randomly reshuffling utilities (removing sensitivity), (B) imputing utilities based on regression models (assuring sensitivity) or simulations with sensitivity assumed a priori. This is followed by a determination of how the analyses respond to the changes. Results: Reshuffling does not affect the results underlying the threshold explanation; hence, this explanation is compatible with the insensitivity hypothesis. Imputation and simulation show that in reasonable situations a negative correlation between negative utility and severity prevails. Conclusion: cTTO seems largely insensitive to severity for WTD states. | Michał Jakubczyk | Valuation | 11400 | Completed | 2022 | 2022 |
| 180-RA | A fast-track proposal for supporting a fresh PhD graduate to do post-doc research work on EQ-5D | This short post-doc research project is proposed for Annushiah who recently graduated from the PhD program of Universiti Sains Malaysia. Annushiah’s PhD work surrounds the Malaysian EQ-5D-5L valuation study. She is one of the very few young EQ-5D researchers in Malaysia. She hopes to do post-doc work but cannot find opportunities partly because of COVID-19. In this project, Annushiah will be mentored by Nan Luo to complete several EQ-5D related projects, including drafting a research proposal for seeking government funding and publishing two manuscripts from her PhD work. This project will help Annushiah to continue her career as an academic researcher. Her work will support the use and research of EQ-5D instruments in Malaysia and beyond. | Nan Luo | Others | 20000 | Ongoing | 2020 | 2024 |
| 1447-RA | Investigating the dimensionality of wellbeing instruments and their added value in explaining health and wellbeing | Background: Comprehensively measuring the outcomes of interventions and programmes impacting both health and broader areas of quality of life is important in the allocation of resources across these sectors. Increasingly, broad quality of life (QoL) measures are being developed to capture outcomes beyond health-related quality of life (HRQoL) measures. Jointly exploring the dimensionality of diverse instruments can improve our understanding about their evaluative space and how they build on, and extend, measures widely used in health care decision making such as the EQ-5D. The aim of this study was to explore the measurement relationship between five broader QoL measures and the most widely used measure of HRQoL in healthcare decision making (the EQ-5D) Methods: The included instruments comprised a pool of 126 items. The measurement relationship was explored using qualitative and quantitative dimensionality assessment methods. This included a content analysis and exploratory factor analyses which were used to develop a confirmatory factor (CFA) model of the broader QoL dimensions. Correlations between the identified dimensions and participants’ self-reported overall health and wellbeing were also explored. Results: The final CFA model exhibited acceptable/good fit (RMSEA=0.046 and CFI=0.901) and described 12 QoL dimensions (i.e., factors): ‘psychological symptoms’, ‘social relations’, ‘physical functioning’, ‘emotional resilience’, ‘pain’, ‘cognition’, ‘financial needs’, ‘discrimination’, ‘Outlook on life/growth’, ‘public services’, ‘living environment’, and ‘control over life’. All dimensions were positively and significantly correlated to self-reported health and wellbeing, but the magnitudes and relative differences in associations varied considerably (e.g., ‘pain’ had the strongest correlation with overall health but among the weakest correlations with wellbeing). Conclusions: This study contributes to a broader understanding of QoL by exploring the dimensionality and relationships among various QoL measures. A number of the dimensions identified are HRQoL focused, with others covering broader constructs. Our findings offer insights for the development of comprehensive instruments, or use of instrument suites that capture multidimensional aspects of QoL. Further research should explore the relevance of the identified dimensions in different settings and populations, and in particular scrutinize the feasibility and appropriateness of measuring the identified dimensions to inform resource allocation. | M. Elske van den Akker-van Marle | Descriptive Systems | 24540 | Completed | 2022 | 2023 |
| 1524-VS | UK valuation of the EQ-5D-5L | Background: A high quality and widely-accepted UK EQ-5D-5L value set is urgently required. Aim: This study will generate a new UK value set for the EQ-5D-5L. Methods: The value set will be generated using 1200 EQ-VTv2 interviews using the composite time trade-off elicitation technique. One hundred and two health states will be valued, 86 of these in line with the international EQ-5D-5L valuation protocol, with 16 additional states added that will be identified as having best predictive performance in the extended design used in the Indian EQ-5D-5L valuation. The sample will be a UK adult sample (age 18 and over) that is proportionately representative across England, Wales, Scotland and Northern Ireland. The sample will be representative for age, gender, ethnicity and socioeconomic group, with the inclusion of participants with and without health problems, with participants from urban and rural areas, across multiple geographical locations within each nation. Each interviewer will conduct approximately 100 interviews in more than one geographic location wherever feasible. Participants will be able to choose to be interviewed via videoconference (i.e. Zoom) or in-person in a central venue. Interviews conducted face-to-face will follow the latest COVID-19 guidelines including local guidelines. Quality and acceptance will be aimed for throughout through public involvement, regular Scientific Committee meetings, and independent assessment of the data at four time points during collection, the final data and analyses by a Quality Control Group. | Donna Rowen | Valuation | 738214 | Ongoing | 2022 | 2025 |
| 466-RA | Testing the validity of EQ-5D-5L respiratory bolt-ons in a large Australian dataset | Objectives: The EQ-5D has been used to assess health related quality of life (HRQoL) in respiratory conditions including chronic obstructive pulmonary disease (COPD) and asthma. However, the core descriptive system may not be sensitive to all the HRQoL impacts of respiratory conditions. To increase the sensitivity of the descriptive system, two bolt-on questions “Limitations in physical activities due to shortness of breath” and “Breathing problems,” have been developed (EQ-5D-5L+R1 and EQ-5D-5L+R2). Psychometric comparisons are required to understand the performance and sensitivity added by the bolt-ons in comparison to other validated instruments. This is important to inform the work of the EuroQol group in the further development of bolt-ons, and the research agenda around bolt-ons. Therefore, this study tested the psychometric characteristics of the EQ-5D-5L+R using a large dataset collected in Australia. Take-away results: o The results show that adding the respiratory bolt-on to the EQ-5D-5L improved the instrument's descriptive sensitivity in a sample of people with respiratory conditions. o The bolt-on ‘‘breathing problems’’ did not have a high correlation with other dimensions which shows that it is a more independent dimension, than the physical activity limitation bolt-on. The “Limitations in physical activities due to shortness of breath” domain might have an overlap with the other EQ-5D domain “usual activities”, which might cause limited sensitivity of the EQ-5D-5L+R1. o The bolt-on instruments are not suggested to be used as a stand-alone instrument however, they can be used alongside the EQ-5D-5L to estimate so-called ‘‘bolt-on’’ QALYs in addition to the calculation of the standard QALYs to show the potential change in treatment impact when a condition-specific domain is included in the economic evaluation. The choice of bolt-on may be driven by whether overall problems or limitations are being measured. Implications and next steps: o Results suggest a level of validity of the bolt-ons in an Australian population, and therefore to facilitate further use, a value set would be beneficial. The values set can be used alongside the EQ-5D in the economic evaluation of new interventions and treatments for respiratory conditions. However, before using the values to measure QALYs (Quality-adjusted life years), future studies should check the validity and responsiveness of the bolt-ons in different respiratory conditions. o Further research is required to investigate whether the EQ-5D-5L+Rs will be more responsive to changes in the health status of patients longitudinally. | Mina Bahrampour | Descriptive Systems | 24070 | Completed | 2022 | 2023 |
| 1455-RA | A comparison of the EQ Health and Wellbeing (EQ-HWB) and EQ-5D-5L instruments. | Objectives: The EQ Health and Wellbeing Short (EQ-HWB-S) is a newly developed generic preference-accompanied measure designed for use in evaluations of health and social care interventions. Further evidence is required to assess the psychometric performance and validity of the measure. This study aims to compare the EQ-HWB-S with an existing measure, the EQ-5D-5L, and expand upon the current evidence assessing the psychometric performance of the EQ-HWB-S relative to EQ-5D-5L. Methods: Data was drawn from the valuation stages of the Extending the QALY (E-QALY) project (UK general population, n=429) and the EQ-5D-5L UK valuation pilot study (UK general population, n=248). Both studies required respondents to complete the EQ-5D-5L and the EQ-HWB-S (experimental version). The experimental version of the EQ-HWB-S was compared with the EQ-5D-5L and psychometric assessment of the measures was conducted. The distribution of responses within instruments and across overlapping dimensions of the instruments (i.e. mobility, usual activities and anxiety / depression) were assessed. Construct validity was assessed based on convergent validity of the EQ-HWB-S with EQ-5D-5L dimensions using Spearman correlations and utility scores using Pearson correlations. Known group validity was assessed by estimating effect sizes to compare the ability of the two instruments to discriminate between known groups based on age, gender, education, caregiving responsibilities, presence of a long-term condition and ‘healthy’ groups (based on the VAS). The degree of agreement in utility values was also evaluated through the use of Bland-Altman plots and estimation of Lin’s concordance correlation coefficient. Results: Variation within individuals’ response levels in overlapping items across instruments were highest in anxiety and depression and lowest in mobility. A potentially problematic skewed distribution was identified in the EQ-HWB-S mobility domain (>70% responding in the top category) which was more evident than in the EQ-5D-5L mobility domain. In all domains of both instruments, <5% responded in the bottom category. Strong associations (rs ≥0.5, P<.001) were found between conceptually overlapping dimensions of the EQ-HWB-S and EQ-5D-5L. Mean EQ-HWB-S utility scores were significantly higher (p<0.01) than EQ-5D-5L scores in the full sample and healthy subsample. The instruments performed comparably in discriminating between known groups including healthy individuals, those with long-term conditions and above average, relative to below average life satisfaction and health satisfaction. Conclusion: The EQ-HWB-S performs favourably with utility values successfully discriminating between groups where differences are expected e.g. ‘healthy’ individuals and those with long-term conditions. Convergence between the EQ-HWB-S and EQ-5D-5L is evident, especially between conceptually overlapping dimensions. | Emily McDool | Descriptive Systems, Valuation | 20420 | Completed | 2022 | 2023 |
| 1494-RA | An investigation of differential item functioning related to age, gender and education in the EQ-5D-5L using ordinal logistic regression | Objectives: The EQ-5D-5L is commonly used in population health studies, clinical trials and economic evaluations as a measure of health. A key assumption for the validity EQ-5D-5L data is measurement invariance, meaning that its items and response options are interpreted in the same way across respondents. If measurement invariance is violated, the EQ-5D-5L would exhibit differential item functioning (DIF), whereby individuals from different groups with the same underlying health respond to it differently. This study investigates whether the EQ-5D-5L is affected by DIF using ordinal logistic regression (OLR). Methods: Data from the Multi-Instrument Comparison (MIC) study was used to investigate DIF, across the following groups: older adults aged 65+ versus younger adults aged 18-64; women versus men; and individuals with different levels of education attainment (high school versus diploma/technical training or university education). OLR was used to investigate whether individuals across groups had different expected EQ-5D-5L scores, despite having the same underlying health. Effect size measures were used to assess whether identified DIF indicated meaningful differences in scores. Analyses were completed on purified and unpurified EQ-5D-5L sum scores and on split-half samples to test the stability of results. Results: No meaningful DIF relating to gender or education was observed for any item. The anxiety/depression item exhibited meaningful age-related DIF, with older adults being less likely to report problems with anxiety and depression. Mobility exhibited age-related DIF to a lesser extent but did not meet the threshold for meaningful DIF. Findings were stable across purified and unpurified analyses. Conclusion: The EQ-5D-5L did not exhibit DIF for gender or education, suggesting response behaviour is generally stable across these groups. Meaningful age-related DIF was found for anxiety/depression and, to a lesser extent for mobility. These findings are consistent with those of a previous study. It is important to further understand causes of DIF in older populations as this may bias estimates of burden of illness and treatment effectiveness. Further research is also required to understand how to control for such DIF. | Hannah Penton | Descriptive Systems, Populations and Health Systems | 24750 | Completed | 2022 | 2023 |
| 206-RA | Estimating an EQ-5D-Y-3L value set in the United Kingdom | The international EQ-5D-Y-3L valuation protocol has now been successfully implemented in several studies. This experience was discussed in a three-day workshop organised by the EuroQol Group and summarised in a report. In general, there seems to be consensus that the use of discrete choice experiments (DCE) is appropriate to elicit preferences for health states that will be experienced by children. However, the most appropriate method to anchor latent scale DCE values onto the QALY scale is still uncertain. In addition, the report recommends a clearer engagement with relevant HTA agencies. This revised application has been prepared following these recommendations and present a research study to estimate a number of EQ-5D-Y value sets under different normative scenarios of perspectives and sample representativeness in the UK. The proposed methodology will be discussed before the study commences with an advisory group and relevant stakeholders and revised if necessary. We will conduct an online DCE with a representative sample of 1,000 adolescents (11-17 years old) and 1,000 adults (18 year and older). Participants will complete the DCE tasks using their own perspective or for a 10-year old child. An adult sample of 200 participants will complete a C-TTO task from the same two perspectives, which will be used to anchor DCE values onto the QALY scale. Finally, we will explore the impact of using value sets under different normative judgments of perspective and UK sample representativeness on QALY gains using patient-level data from a clinical trial with long-term follow-up. | Oliver Rivero-Arias | Youth | 360500 | Ongoing | 2023 | 2025 |
| 1483-TVG | Scientific international exchange project in the context of the EQ-sponsored PhD project (PHD-287) on inequality research with orthopedic registry data. | I had the privilege to perform research at the department of population health sciences and orthopedic surgery in a world-renowned hospital (Mount Sinai Hospital, New York), with one of its focus being registry data analysis. The director dr. J. Poeran, an epidemiologist with Dutch origins, of whom Gouke Bonsel was his original PhD advisor, personally supervised this project. We primarily aimed to explore analytical techniques used to analyze health inequalities, specifically the concentration index and accompanying decomposition analysis. Secondarily, we aimed to understand the organizational structure of the visited research institute, the perspective of clinicians on end-user registry data, and the potential incorporation of the EQ-5D. Key scientific results: we selected the Medicare dataset with different outcomes, which can easily be substituted by the EQ-5D (see below for an elaborate explanation on this choice). We studied socio-economic inequalities in the use and effectiveness of regional anesthesia in patients undergoing hip or knee arthroplasty. We found a strong relation between hospitals and socioeconomic status, which complicated the use of concentration indices for analyzing health inequalities. Instead, adjusted Population Attributable Risks (PARs) were calculated and a quasi-moderation analysis was performed to determine the effect of socioeconomic and hospital-level factors on the use and effectiveness of regional anesthesia. We consider the adjusted PAR calculation to be a valuable analytical technique for EuroQol research, potentially aiding in determining the relationship between variables of interest and improvements or deteriorations in EQ-5D scores after arthroplasty. Deliverables: one manuscript is being prepared for submission to a high-impact anesthesiology journal, focusing on the presence of access and outcome inequalities of regional anesthesia in hip or knee arthroplasty. The key findings of the secondary aims were: 1. That there is a gap in the current routine collection of PROMs: PROMs are not routinely collected of conservatively treated patients. Promoting the collection of PROMs in this group will open the door to further research, including the use of PROMs in selecting candidates for surgery. Moreover, it will further promote the wide-spread use of PROMs (EQ-5D) in routine care. 2. At the Mount Sinai Hospital, the collection of PROMs is in its early stages, with discussions ongoing to streamline the process within the Orthopedic Surgery department. Furthermore, the routine clinical use of the EQ-5D is limited in the USA. In clinical studies, however, the EQ-5D can be additionally collected. The Mount Sinai Hospital, with its large Orthopedic Surgery department, could serve as a valuable candidate hospital for multicenter studies. 3. Regarding the competitiveness of the EQ-5D compared to other generic PROMs, it is worth noting that US statisticians consider the availability of value sets a clear strength of the EQ-5D. However, in current US policy-making, cost-effectiveness data using quality of health measures are not mandatory nor regarded vital from a clinical point of view. Only if this policy matrix changes in the future, the role of the EQ-5D in the USA could significantly expand. New collaborations/next steps: the exchange project fostered mutual interest between the department of Orthopedic Surgery at Erasmus Medical Center and the visited department at Mount Sinai Hospital. A number of future collaborations are being considered, particularly in utilizing Dutch Orthopedic Registry (EQ-5D) data. In all, I regard my visit as a very fruitful exchange. Valuable delivrables were created as were many opportunities for future collaborations on EuroQol related research in the field of orthopedic outcome research, and on doing advanced inequality analysis in particular. I was pleased that the hosting institute expressed their high esteem of the achievements made. Also, I believe that my personal research skills have markedly developed due to the stimulating environment. I want to thank the EuroQol group and members of the Exec for their support in this work. Without their support, this work would not have been possible. | Joshua Bonsel | Populations and Health Systems | 5750 | Completed | 2022 | 2022 |
| 1484-RA | The impact of traffic-light color coding in discrete choice health-state valuations | Previous work has identified attribute level overlap and color coding as effective and attractive strategies to reduce task complexity and improve behavioral efficiency in discrete choice experiments (DCEs). However, the simultaneous and combined impact of level overlap and color coding on attribute non-attendance and choice consistency has not yet been investigated. To address this limitation and to strengthen the available evidence base, this paper re-analyzed an existing randomized controlled DCE from the Netherlands (N=2,731) and analyzed a new randomized controlled DCE conducted in the United Kingdom (N=3,084) using heteroskedastic attribute non-attendance mixed logit models. Both randomized controlled experiments were based on a relatively complex instrument with 5 attributes with 5 levels each and produced very similar results. In the base-case study arms without level overlap and color coding, only half of the attributes are attended to. When color coding is added as a stand-alone strategy, it significantly improves attribute attendance but reduces choice consistency by about 10%. When level overlap is added as a stand-alone strategy, it significantly improves attribute attendance and simultaneously increases choice consistency by about 10%. The combination of level overlap and color coding is even more effective and results in almost full attribute attendance and a 30% increase in choice consistency. Experimental designs with level overlap are therefore recommended as a default design strategy and color coding recommended to further increase respondents’ behavioral efficiency in complex DCEs. | Marcel Jonker, PhD | Valuation | 11200 | Completed | 2022 | 2022 |
| 1475-RA | Exploring the content validity of the EQ-PSO bolt-ons in chronic skin conditions other than psoriasis | Background: The objective of this study was to assess the content validity of the EQ-5D-5L and four bolt-ons: skin irritation, self-confidence, social relationships and sleep, for people with atopic dermatitis (AD) and chronic urticaria (CU). Methods: Adults with AD (N=15) or CU (N=15) in the United Kingdom, with varying levels of severity, participated in either online or in-person semi-structured interviews. During the interviews, participants were first asked about the symptoms and impacts of their condition. They were then asked to complete the EQ-5D-5L and four bolt-ons using ‘think-aloud’ and retrospective probing. Interviews were recorded, transcribed, then analysed using content and thematic analysis. Results: Participants spontaneously reported itch (AD: 100%; CU: 93%), self-confidence (AD: 100%, CU: 47%), sleep (AD: 53%; CU: 53%), and social relationships (AD: 27%; CU: 60%). The skin irritation bolt-on was the most important dimension for 60% of AD and 73% of CU participants. Social relationships was more frequently ranked as the least relevant among the other bolt-ons. Overall, 15, 9, 9 and 7 AD participants and 15, 9, 10 and 6 CU participants respectively supported adding the skin irritation, self-confidence, sleep and social relationship bolt-ons to the EQ-5D-5L. Few missing concepts were identified (e.g. treatment burden, appearance, anger or frustration). Conclusions: Our findings support the use of the skin irritation and self-confidence bolt-ons, originally developed for psoriasis patients, in AD and CU. Skin irritation, self-confidence and sleep bolt-ons showed good evidence of content validity in these two populations. The value of the social relationships bolt-on warrants further investigation. | Andrew Lloyd | Descriptive Systems | 80760 | Completed | 2022 | 2024 |
| 1479-TVG | Research visit to University of Auckland to facilitate collaborative working and engage with local stakeholders to promote routine PROM data collection and analysis in the New Zealand healthcare system. | I visited the Universities of Auckland, Otago and Macquarie during the period 8th March to 18th April 2023. This visit was facilitated by Paula Lorgelly, Trudy Sullivan, Sarah Derrett and Yuanyuan Gu to whom I am grateful. Most of the time was spent at the University of Auckland, where I engaged with a number of staff members and explored opportunities for future collaborations on EQ-related topics (e.g. collecting and linking HRQoL data as part of national surveys). | Nils Gutacker | Populations and Health Systems | 11490 | Completed | 2022 | 2022 |
| 1462-PHD | Examining the desirability, feasibility, and impact of involving children in the valuation of EQ-5D-Y health states | **Background:** The valuation of EQ-5D-Y (-3L/-5L) health states by adults has been a subject of ongoing discussion, particularly after publication of the valuation protocol in which adults perform valuation tasks for a 10-year-old child. Recent evidence indicates that the valuation of EQ-5D-Y health states may be influenced by adults’ fear of underestimating health problems when performing valuation tasks for a child or adolescent. Adults feel uncomfortable not knowing the health-state preferences of the child or adolescent and anticipate what their preferences might be. In fear of making a wrong choice, being considered a bad parent, or others bearing a grudge against them, adults compromise between their own preferences and the anticipated preferences of the child or adolescent. Furthermore, adults struggle with the responsibility of stating preferences for a child or adolescent. They believe that adolescents are able—and should be enabled—to make such decisions for themselves and that children should at least be consulted or (somehow) involved in these decisions. Adults’ belief that children and/or adolescents should be involved in the valuation of EQ-5D-Y health states runs parallel to the increased interest of researchers and policymakers to involve stakeholders in decisions on health and healthcare to improve the quality, relevance, and outcomes of research and policies, empower stakeholders, and promote the transparency and legitimacy of decisions. Nonetheless, insight into the desirability, feasibility, and needs of stakeholders (potentially) involved in and affected by the valuation of EQ-5D-Y health states, and the impact of their involvement on the valuation of EQ-5D-Y health states is currently lacking. **Aims:** To provide insight into the desirability, feasibility, and impact of involving children (8–18 years) in the valuation of EQ-5D-Y health states by addressing four evidence gaps in successive work packages (WPs): • WP A provides insight into the theoretical/normative and empirical underpinning of involving stakeholders, in particular children, in decisions on health and healthcare. • WP B provides insight into whether and (further explores) why child and adult members of the public, and policymakers in healthcare believe that (somehow) involving children in the valuation of EQ-5D-Y health states would be desirable and feasible. • WP C provides insight into the various ways in which children can (potentially) be involved in the valuation of EQ-5D-Y health states, and into the necessary conditions and stakeholder support for putting these ways into practice. • WP D provides insight into the impact of involving children on the valuation of EQ-5D-Y health states. **General methods:** To achieve the abovementioned aims, a combination of qualitative and quantitative methods will be applied; targeted review of the theoretical/normative and empirical literature, and (health) policy reports on stakeholder involvement (WP A), semi-structured interviews with children (8–18 years), adults, and policymakers (WP B), identification and description of the various ways in which children can be involved in the valuation of EQ-5D-Y health states based on previous results and semi-structured interviews with experts on child (mental) health and well-being (WP C), and impact assessment of the most promising way for involving children on the valuation of EQ-5D-Y health states (WP D). | Vivian Reckers-Droog | Valuation, Youth | 283328 | Ongoing | 2023 | 2027 |
| 1463-PHD | Reporting heterogeneity in health description and valuation: identification, correction, and sources | EuroQol instruments are often used to compare health (gains) across groups defined by disease, demographic, socioeconomic, and other characteristics. Systematic differences in the way in which groups respond to the instruments – *reporting heterogeneity* (RH) – bias comparisons. For example, *socioeconomic health inequality* will be underestimated if lower socioeconomic groups report health more positively. Such differences in reporting styles may, in part, arise from differences in health knowledge and beliefs. RH is potentially present in EQ-5D descriptions of health levels within dimensions, in EQ VAS global assessments of health, and in EQ-5D value sets representing preferences between levels and across dimensions. To identify and correct RH in these EuroQol instruments, some external anchor is required. For example, a respondent’s evaluation of the health of a vignette description of functioning within a health domain identifies RH, which can then be purged from the respondent’s evaluation of their own health, using the same instrument. This method relies on the assumptions of *vignette equivalence* (VE) – all respondents interpret a vignette in the same way – and *response consistency* (RC) – a respondent uses the same style to report own health and that of the vignettes. There is limited and mixed evidence on the validity of these assumptions, particularly in the context of EuroQol instruments. This PhD project will test for RH in data obtained with EuroQol instruments and it aims to develop methods to purge these instruments of RH. In collaboration with the research team, the student will review vignettes that have been developed for use with the EQ-5D descriptive system, with a view to developing new vignettes for which the identification assumptions (VE and RC) are more plausible (WP1). Next, we will develop and test methods that use vignettes data to identify and correct RH in categorical ratings of health obtained with EQ-5D (WP2). The project will also evaluate the use of vignettes to purge RH from EQ VAS scores (WP3). In addition to identifying RH and correcting for it in data obtained with EuroQol instruments, the project will explore sources of RH. In particular, we aim to test the hypothesis that it arises, in part, from differences in health knowledge and beliefs (WP4, WP5). Evaluation of a health state may be contingent on ability to recognize its risks and on beliefs about the relative position of that state. Finally, we will apply the methods developed in WP1-WP5 to purge RH from estimates of socioeconomic health inequality obtained with EuroQol instruments (WP6). | Teresa Bago d'Uva | Populations and Health Systems | 253328 | Ongoing | 2022 | 2026 |
| 1489-RA | Estimating interactions between the health domains in stand-alone DCE valuation studies | OBJECTIVE: In a previous EQ sponsored study (i.e. EQ Project 415-RA), we proposed a parsimonious modelling approach that allows for a full set of two-way interactions between the EQ-5D health domains. In the absense of a discrete choice experiment (DCE) dataset that was suitably optimized to identify a full set of two-way interactions, the proposed modelling approach was applied to an existing EQ-5D-3L dataset without duration. In this project, the previously developed modelling approach has been applied to a stand-alone EQ-5D-5L DCE with duration and EQ-5D-EQ-5D-3L composite time trade-off (cTTO) dataset. These analyses are aimed at providing important input for a) the anchoring process in the upcoming stand-alone DCE duration protocol, and b) provide evidence that the valuation of the 5 health domains are potentially not independent, which has ramifications for a bolt-on valuation strategy that the VWG needs to develop in the near future. METHODS: Instead of supplementing a main effects model with interactions between each and every level, a more parsimonious optimal scaling approach was used. This approach is based on the mapping of health-state levels onto domain-specific continuous scales. The attractiveness of health states is then determined by the importance-weighted optimal scales (i.e. main effects) and the interactions between these domain-specific scales (i.e. interaction effects). The number of interaction terms only depends on the number of health domains. As a result, interactions between dimensions can be included with only a few additional parameters. EMPIRICAL APPLICATIONS: The proposed models with and without interactions are fitted on three valuation datasets from two different countries, i.e. an Australian EQ-5D-3L time-trade-off (TTO) dataset with N=400 respondents, and a Dutch EQ-5D-5L DCE with duration dataset with N=788 respondents - and a Dutch latent-scale discrete choice experiment (DCE) dataset with N=3,699 respondents that was already analyzed in the previous project. RESULTS: Important interactions between health domains were found in all three applications. The results confirm that the accumulation of health problems within health states has a decreasing marginal effect on health state values. Moreover, conform the prior hypothesis, particularly the DCE with duration value set depends strongly on the inclusion of interaction effects. CONCLUSIONS: The proposed interaction model is parsimonious, produces estimates that are straightforward to interpret, and accommodates the estimation of interaction effects in health state valuation studies with realistic sample size requirements. Not accounting for interactions is shown to result in profoundly biased QALY tariffs, particularly in stand-alone DCE with duration studies. | Marcel Jonker, PhD | Valuation | 44500 | Completed | 2022 | 2023 |
| 1493-RA | An investigation into the psychometric performance of the EQ-PSO in patients with atopic dermatitis in the UK and Germany | The widespread use of the EQ-5D measures stems in large part from the fact that they are generic and preference based, meaning they can be used to estimate utility across a wide range of conditions. To be amenable for valuation, a HRQoL measure must be short. This necessitated brevity, combined with the need to be generic, means that some aspects of health or disease symptoms will be missed, leading to a lack of validity or sensitivity in some conditions. Bolt-ons have been proposed to improve the coverage of the EQ-5D in such conditions. The EQ-PSO was developed to improve the performance of the EQ-5D in psoriasis. It consists of the core EQ-5D-5L dimensions, as well as two bolt-ons covering skin irritation and self-confidence. While the EQ-PSO was developed as psoriasis-specific, it is also likely to be relevant in other skin conditions which present with similar symptoms, for example atopic dermatitis (AD). Evidence on the psychometric performance of the EQ-PSO in AD patients would be of value to determine the broader relevance of these bolt-ons. This study therefore aims to investigate the psychometric performance of the EQ-PSO in patients with atopic dermatitis in the UK and Germany. Data will be collected via online survey. The convergent and known-group validity of the EQ-5D-5L, EQ-PSO and dermatology life quality index (DLQI) will be compared. The structural validity of the EQ-PSO will be explored using factor analysis. Dependency between itch and pain/discomfort will be explored through item correlations and regression analysis. The addition of a sleep bolt-on will be explored to examine whether this adds to the performance of the measure or whether this is already captured within the existing items. | Hannah Penton | Descriptive Systems | 49950 | Ongoing | 2022 | 2024 |
| 1465-VS | Developing a value set for the EQ-5D-5L in United Arab Emirates | We completed a valuation study for the EQ-5D-5L in United Arab Emirates (UAE) following the EuroQol EQ-5D-5L Valuation protocol. The study was conducted as proposed and was completed according to timelines. The value set was derived using a hybrid model using an analytical sample of 1005 participants representative of the general UAE population. | Fatima Al Sayah | Valuation, Populations and Health Systems | 77360 | Completed | 2022 | 2024 |
| 1497-RA | Values for EQ-5D-Y-3L: a comparative analysis of value sets and meta-analysis of international valuation data | Background: Since publication of the EQ-5D-Y valuation protocol (Ramos-Goni et al 2020), there has been considerable interest in undertaking valuation studies and rapid progress toward producing value sets. So far, more than 10 studies have completed data collection, and several others are on their way. As the EQ-5D-Y valuation protocol that is currently used may not be the final version, this first wave of studies may provide us with a wealth of information on various aspects of values for EQ-5D-Y-3L states, as well as on how respondents value these states. Furthermore, the availability of these value sets allows for a comparison of values for the EQ-5D-Y-3L instrument and for those of adults. Aims: This study has three aims: 1) conducting a comparative analysis of EQ-5D-Y value sets, 2) conducting a comparative analysis of EQ-5D-Y respondent-level valuation data, and 3) comparing EQ-5D-Y-3L and EQ-5D-5L value sets. Methods: A comparative analysis of value sets will be undertaken, in which the EQ-5D-Y-3L value sets of at least 10 countries are extracted from their respective manuscripts. Following a similar methodology of previously published work by Olsen et al (2018) and Roudijk et al (2022), we will compare how EQ-5D-Y-3L value sets may differ between countries, and additionally, whether these differences may relate to methodological choices made in these studies. For the comparative analysis of valuation data, PI’s of valuation studies will be contacted and asked to collaborate. In each dataset, preferences will be explored using latent class models, and it is tested whether similar latent classes exist between countries. Furthermore, the agreement between the cTTO and DCE data is tested within countries. Lastly, for the comparison of youth and adult value sets, we will focus on ordinal information that can be extracted from the respective EQ-5D-Y-3L and EQ-5D-5L value sets. For each country included, we will compare characteristics such as scale length, relative importance of the 5 dimensions, percentage of negative states. Furthermore, we will compare the values directly, and provide illustrative examples of how values may differ when transitioning between the EQ-5D-Y-3L and EQ-5D-5L instrument. Relevance: The three proposed studies may help us better understand how values for EQ-5D-Y-3L health states differ between countries, how respondents may differ in their responses between countries, and whether the two valuation methods agree within countries. Furthermore, these studies will provide information on the transition between youth and adult value sets. This is all relevant for potential future valuation protocol updates, and may also be informative for researchers that want to value EQ-5D-Y-5L in the future once it gains beta status. | Nancy Devlin | Valuation, Youth | 56000 | Ongoing | 2022 | 2025 |
| 1514-RA | Comparing Measurement Properties of the EQ Health and Wellbeing Experimental Version (Long and Short) and the EQ-5D-5L in the Italian Population | Objectives: The EQ Health and Wellbeing, EQ-HWB (25-item) and the EQ-HWB-S (9-item), are new generic measures of health and wellbeing. The purpose of this study was to examine the measurement properties of the EQ-HWB and EQ-HWB-S measures in relation to the EQ-5D-5L among the Italian general population. Methods: A cross-sectional survey was conducted from October 2020 to February 2021, followed by a secondary analysis of collected data from Italian adults. This analysis included response pattern distributions, correlation strength, and known group comparison (KGC). KGC was assessed using effect sizes (ES) across health conditions, caregiver status, and social care usage. The EQ-HWB-S index-based score was based on the UK pilot value set, while the Italian value set was used for scoring the EQ-5D-5L index. Results: Out of the 1,182 participants, 461 reported having a chronic condition, 185 identified as caregivers, and 42 were social care users. EQ-HWB items (7.5%) showed fewer ceiling effects than EQ-5D-5L items (34.7%). Strong correlations (rs>0.5) were found between overlapping EQ-HWB and EQ-5D-5L items. EQ-HWB-S and EQ-5D-5L index scores demonstrated similar discrimination based on symptomatic chronic conditions (ES d=0.68 vs. d=0.71), but EQ-HWB-S had slightly higher ES for social care users (ES d=0.84 vs. d=0.74). Conclusion: Initial evidence supports the validity of EQ-HWB/EQ-HWB-S as outcome measures in the Italian population. EQ-HWB-S performed comparably to EQ-5D-5L among patients and was better in differentiating social care users. A slight decrease in discriminative properties for caregivers was observed when transitioning from EQ-HWB to EQ-HWB-S. | Maja Kuharic | Descriptive Systems, EQ-HWB | 24900 | Completed | 2022 | 2023 |
| 1404-RA | Revised title: Are there any challenges in valuing Y-5L arising from the descriptive system? A multi-country study Previous title: A multi-country pilot study of EQ-5D-Y-5L valuation | Title: Are there any challenges in valuing Y-5L arising from the descriptive system? A multi-country study Psychometric evidence suggests some improved measurement properties of the EQ-5D-Y-5L (Y-5L) compared to the EQ-5D-Y-3L (Y-3L). In the same way that the EQ-5D-5L is considered to be the “flagship” instrument for measurement and valuation of health for adults, a similar role is possible for the Y-5L in paediatric populations. The Y-5L is planned to be launched as an approved instrument in 2024. However, to date no research has been undertaken to test the valuation of the expanded Y-5L descriptive system. The aim of this project was to (a) identify whether the descriptive system for the Y-5L presents any problems when states from it are presented in valuation tasks (e.g., preference reversals in severity levels); (b) establish the feasibility of eliciting stated preferences for the Y-5L from both adult and adolescent members of the general public; and (c) undertake initial exploration of the characteristics of stated preferences for the Y-5L across countries, with a focus on the implications of results for the descriptive system. The study was conducted among adults and adolescents from five countries: Australia, Canada, China, Netherlands and Spain, using DCE and response scaling tasks. Target samples included n = 1000 adults (>18 years) and n = 1000 adolescents (12-17 years) in each country, recruited from multiple panels via a market research company ‘Cint’. In the DCE tasks, adults used a 10-year-old perspective, and adolescents used their own perspective. Respondents undertook two response scaling tasks after the DCE, to arrange the labels for the Y-5L and Y-3L (for just one dimension, randomly assigned) on a VAS, to indicate their perceived level of severity. Results showed that, overall, adults can mostly interpret the level labels in their intended order of severity, and results were in general consistent from DCE tasks. We did not find statistically significant positive coefficients (i.e. ‘misorderings’ of coefficients) from DCE tasks, suggesting it is unlikely that the current descriptive system for the Y-5L presents problems when states from it are presented in valuation tasks using DCE without duration. However, we observed a few cases in which coefficients were negative but statistically insignificant in the DCE modelling results. These were found for moving between level 2 and level 3, on the first four dimensions of the Y-5L in Canada, Australia, China and the Netherlands, but not in the Spanish version. Response inconsistency based on the response scaling task analysis was more prevalent in adolescents compared to adults in all countries except for China. However, the overall patterns in dimension importance were broadly similar between adults and adolescents within each country: PD had the largest DCE decrement in all countries except China; SC and UA had the smallest decrements in all five countries. Adolescents valued MO as more important compared to adults. Our findings highlight further research on the best approach to value Y-5L is needed, and to explore the feasibility of eliciting adolescents’ preferences using different valuation methods, given the challenges in recruiting adolescents online and the increasing prevalence of fraudulent data in online, self-completion administration of valuation tasks. | Nancy Devlin | Valuation, Youth | 169563 | Completed | 2022 | 2023 |
| 1499-SG | Fast and flexible MIXL model estimation using Automatic Differentation | Aim: To contract a former academic researcher / consultant / software developer from Aachen University, Germany to verify whether Automatic Differentiation (AD, https://en.wikipedia.org/wiki/Automatic_differentiation) can be used to fit MIXL models using Laplace Approximations. If successful, which is likely but cannot be 100% guaranteed, AD can be used to salvage the numerical stability and accuracy problems that were encountered in a previous project (EQ Project 163-2020RA). Methods: During the execution of EQ Project 163-2020RA it was found that the implementation of analytical derivatives proved to be more challenging and time-consuming than initially expected. In addition, once implemented, our Monte Carlo simulations revealed numerical problems when increasing the model’s dimensions to those of the EQ-5D (i.e. 20 parameters). Automatic Differentiation (AD), by researchers in the field often referred to as Algorithm Differentiation, is theoretically the ideal solution for both problems; however, it is uncertain to which extent the existing MIXL code, which is implemented in C++ using the Eigen numerical library, plays nicely with the AD tool developed in and used by Aachen University. Therefore, this Research Seed Grant is used to verify the existing analytical derivatives using forward-mode AD, see if removing the analytical derivatives solves the numerical problems, and finally to investigate which steps are required to create a more performant backwards-mode AD implementation. The latter is intended to serve as the required input for a full-fledged follow-up project proposal aimed at providing EQ researchers with an easy-to-use MIXL model estimation tool for analyzing stand-alone DCE with duration datasets. | Marcel Jonker, PhD | Valuation | 5400 | Ongoing | 2022 | 2022 |
| 1413-RA | Fitting mixed logit models with a garbage class instead of manually screening for respondents with low data quality | OBJECTIVES: The upcoming stand-alone discrete choice experiment (DCE) valuation protocol requires the Group to think about efficient and reliable approaches to assess DCE data quality. This manuscript introduces the garbage class mixed logit (MIXL) model as a convenient and performant alternative to manually screening for respondents with low data quality. METHODS: Garbage classes are typically used in latent class logit analyses to designate or identify group(s) of respondents with low data quality. Yet the same concept can be applied to achieve an automated selection of respondents in MIXL models as well. RESULTS: Based on a re-analysis of four DCEs, including an EQ-5D-5L dataset, it is shown that the garbage class MIXL model and root likelihood (RLH) tests have indistinguishable empirical accuracy. Previous research has shown that the latter has superior performance compared to internal validity tests (such as repeated and dominant choice tasks), which means that also garbage class MIXL models have excellent sensitivity and specificity. The advantage of garbage class MIXL models, however, is that they require no user effort and produce preference estimates that do not depend on statistical cut-off values. CONCLUSIONS: Including a garbage class in MIXL models removes the influence of respondents with a random choice pattern from the MIXL model estimates, provides an estimate of the number of low-quality respondents in the dataset, and avoids having to manually screen for respondents with low data quality based on internal and/or statistical validity tests. Although less versatile than the combination of standard MIXL estimates with separate assessments of data quality and sensitivity analyses, the proposed garbage class MIXL model provides a fully automated and reliable alternative that is applicable to both DCE with and without duration data but particularly relevant for the upcoming EQ-DCE-VT protocol. | Marcel Jonker | Valuation | 25000 | Completed | 2022 | 2022 |
| 1411-VS | Valuing health‐related quality of life: An EQ‐5D‐5L value set for Morocco | Background: There is a growing interest in health technology assessment (HTA) in Morocco. An EQ-5D-5L value set allows the computation of Quality Adjusted Life Years (QALYs) in economic evaluations of healthcare interventions to support decision making. Although context-specific HTA is needed, a value set for the EQ-5D-5L based on the preferences of the general Moroccan population is not yet available. Objective: The aim of this study was to develop a Moroccan value set for the EQ-5D-5L based on data from a representative sample of the Moroccan adult population. Methods: A nationally representative sample using quota stratified sampling based on gender, age category, and urban/rural residence was approached based on the last general population and housing census data in Morocco. Data were collected using the international valuation protocol developed by the EuroQol Group (EQ-VT) to elicit the health preferences using: (i) composite time trade-off (cTTO) and (ii) discrete choice experiment (DCE). The cTTO includes 86 EQ-5D-5L health states grouped into 10 blocks, each block with 10 health states. The DCE comprises 196 pairs EQ-5D-5L health states grouped into 28 blocks, each block with 7 choice pairs. Each respondent valued 1 block of health states using cTTO, and 1 block of DCE pairs. The cTTO and DCE data were modeled using a Tobit model and a conditional logit model, respectively. In addition, these models were combined using a hybrid model. Model performance was compared using AIC and BIC criteria. Results: A total of 1006 respondents were included in the study. Responses from 30 participants (3%) were flagged according to the 4 quality control criteria. The cTTO distribution was similar across interviewers and there were only minor interviewer effects. The most common health problem reported by participants was anxiety/depression (44.53%), and the least frequent health problem was self-care (15.71%). The mean ± standard deviation of the EQ VAS score was 77.25 ± 17.05. The hybrid model was considered the preferred model, i.e., the estimated coefficients attributed to the levels of severity were logically consistent. The pain/discomfort dimension had the largest effect on health state preference values, followed by anxiety/depression, mobility, self-care and usual activities. The hybrid model was in relative agreement with the cTTO and DCE models regarding the order of dimensions that affect the HRQOL. Conclusion: Morocco is the second country in the MENA region (following Egypt) with an EQ-5D-5L value set. This study supports the use of EQ-5D-5L data for healthcare decision-making in the Moroccan context. The availability of the EQ-5D-5L value set will facilitate health technology assessment in Morocco. Moreover, it will be used to implement patient-reported outcomes measures for routine clinical practice to improve the monitoring and management of patients and thus provide more evidence for decision-makers in healthcare systems in Morocco. | Abdelghafour MARFAK | Valuation | 21000 | Completed | 2022 | 2024 |
| 1414-EO | The First EuroQol Latin American Academy Meeting | This meeting was held in Trinidad and Tobago at the Trinidad Hilton on November 9th and 10th, 2022 in collaboration between the EuroQol Research Group and the University of the West Indies. The organizing committee comprised Henry, Victor (cohost), Elly, Bas, Bram, and Mandy. | Henry Bailey | Education and Outreach | 98113 | Completed | 2022 | 2022 |
| 365-RA | Measuring Health-Related Quality of Life (HRQoL) in the Youngest Population | The Toddler and Infant (TANDI) HRQoL measure for use in children aged 0-3 years is designed for completion by proxy and was developed in English in South Africa. It was based on the EuroQol model of health status and aimed to be part of the EuroQol family of instruments to allow measurement and valuation of health across the lifespan. The TANDI was developed following a rigorous process which included the generation and refinement of the item pool through review of the literature (EQ Project 2014_200), cognitive interviews with caregivers of children, a round table meeting with paediatric experts (EQ Project 2016_180) and two rounds of an online Delphi panel with international experts in paediatric health and HRQoL (14). A preliminary set of 11 items (dimensions) were quantitatively tested in children with and without illness and reduced, according to a priori criteria to six dimensions and a Visual Analogue scale measuring general health (15). The final version of the TANDI includes six dimensions: movement, play, pain, relationships, communication and eating, with (currently) three levels of severity in each (Appendix B). The measure has retained the EQ-VAS (15). Content validity and psychometric properties of the TANDI have only been tested in South Africa with good results. Concurrent validity of dimensions showed moderate to strong correlations to instruments measuring similar constructs. Internal consistency reliability was good (α= 0.83). The TANDI was able to discriminate between known groups (children with acute illness, chronic illness and those from the general population). Test-retest results showed no variance for dimension scores of movement and play, and high agreement for pain (83%), relationships (87%), communication (83%) and eating (74%) and the VAS scores were highly correlated (ICC = 0.76; p < 0.001). Intellectual property (IP) of the TANDI has been transferred to the EuroQol Research Foundation and it is currently classified as an experimental version. | Janine Verstraete | Youth | 475039 | Ongoing | 2022 | 2025 |
| 404-RA | Better than dead? – but this or that? Testing how framing impacts viewing a health state as worse than dead. | Objective: Current approaches to health state valuation rely on credible classification of states as either `better than dead' (BTD) or `worse than dead' (WTD). We investigate how the evaluation of health states is affected by the framing of the BTD/WTD distinction in pairwise comparison tasks. Methods: We conducted an online survey with 361 participants to compare the propensity to value a state as WTD under six frames: derived from regular time trade-off (TTO; frame A) or from lead-time TTO (LT-TTO; frame B), dismissing with immediacy of death (C) or with the process of dying (D), corresponding to CUA by measuring whether extending lifetime is desirable (E) or how health improvements from a given state are perceived (F). Each participant valued 9 EQ-5D-5L health states using three frames. The frames were compared in several approaches to confirm the robustness against indirect comparisons or respondent heterogeneity and inattentiveness. Results: The odds of a state being considered WTD, compared with frame A, increase 2.7-fold (1.5-fold) in frame B and E, respectively, and decrease >5-fold in frame F. Frames C and D do not differ significantly from frame A. Accepting euthanasia and being <40 years old independently increase the odds of considering a state WTD. Conclusions: Different framings of the question whether a state is WTD or BTD, even if theoretically equivalent, yield substantially different results. In particular, whether a state is considered WTD differs greatly between regular TTO and LT-TTO and between the methods used in valuation and in the CUA context. | Michał Jakubczyk | Valuation | 39404 | Completed | 2022 | 2023 |
| 1543-RA | VMC proposal for developmental work to support development of gender neutral language in the EuroQol suite of measures | (Note: This project has been discussed by email between the VMC (Sarah and Jennifer) and Elly and Bernhard. The project is being entered in to the portal so their is a project number allocated to it ad a budget stated for the external researchers and advisors to invoice against). The VMC wish to explore the use of gender-neutral terms in PROMS generally and in the EuroQol instruments in particular and is thus seeking funding to undertake this work. At the 2021 Strategic Planning Meeting the VMC agreed in principle that one of the roles of the Committee is to ensure that the EuroQol instruments are as inclusive as possible. In recent years there has been an increasing realization that gendered language may alienate certain respondents and may exclude some groups from participating in surveys. However, before the VMC proceeds to alter existing wording or introduce new phrases, there needs to be a strong theoretical foundation upon which to make these changes. The need for this strong foundation has become evident with each of our VMC/RWS meetings where the complexity associated with gender neutrality is evident. This proposal is requesting support for external-to-VMC expertise to undertake a scoping review with VMC members. Specifically: 1) For a researcher (external to the VMC) to lead a scoping review of published literature to identify, describe and understand the strategies used by others in addressing gender inclusiveness/neutrality in questionnaires 2) Engage advisors to provide specialist advice. We would like at least one advisor to come from the LGBTQIA+ (Rainbow) community to help ensure findings are interpreted in a non-discriminatory manner and one advisor from a region where there may be cultural/policy challenges to the use of gender neutral/inclusive language. Apart from providing the VMC with a theoretical foundation on which to base any further action on this topic, the project will deliver: A paper prepared for submission to a peer-reviewed journal, a survey of EuroQol members, and a report to the VMC and Executive. | Sarah Derrett | Others | 20900 | Completed | 2022 | 2024 |
| 427-RA | Conceptualising bolt-ons: identifying key questions | The notion of adding ‘bolt-on’ items to the EQ-5D has been discussed since its conception. However, there remains a lack of consensus on how bolt-ons should be developed and in what circumstances (if any) they ought to be used. The purpose of this project is to develop a foundation on which to build future bolt-ons research. Specifically, we seek to identify the key conceptual questions that are outstanding in order to inform the future development of a conceptual framework for bolt-ons and, ultimately, protocols for their development and use. For instance, it is important to identify questions relating to bolt-on descriptive systems, the valuation of bolt-ons, and how and when to use bolt-ons. We will do this by i) conducting a review of the literature, ii) leading a workshop with relevant EuroQol members, and iii) inviting the wider EuroQol membership to complete a survey. We will work closely with members of EuroQol committees and working groups to establish a supportive infrastructure for bolt-ons research. This collaborative project will enable us to understand how a conceptual framework for bolt-ons may be identified and how future research may address outstanding questions. | Chris Sampson | Descriptive Systems, Valuation | 42840 | Ongoing | 2022 | 2025 |
| 435-RA | Employing Episodic Future Thinking to reduce the distortion of time preference in TTO | Previous research has found that the time trade-off (TTO) method is influenced by time preferences. More specifically, TTO results are typically distorted by discounting the life duration in the method. Most previous research has corrected distortion from time preference after the task is completed, however, employing such correction may increase additional noise in TTO results and/or neglect individual heterogeneity in time preference. This study, therefore, aims to explore the possibility of reducing distortion caused by discounting in advance i.e., applying Episodic Future Thinking (EFT) before the cTTO tasks commence. EFT is a validated protocol in psychology that facilitates detailed stimulation of potential future events in order to help reduce discounting. In this study, respondents in the EFT groups were asked to imagine life in the next 10 to 20 years, aiming to improve their ability to value future health states with more future-related emotions. For a better comparison, we utilized Episodic Recent thinking (ERT) with filler tasks in the control group to recall recent memories. 150 participants from the UK general public were recruited for personal online interviews, who were randomly and evenly assigned to the control (ERT) and treatment (EFT) group. TTO utilities of seven EQ-5D health states were estimated by the composite TTO (cTTO) method and time preference was measured by the direct method. There is no significant difference in terms of discounting value, the mean of TTO utilities between EFT and ERT groups. We also found no significant evidence in favor of EFT affecting discounting in EQ-5D-5L valuation. Correcting for discounting resulted in lower TTO utilities in the ERT group, compared to implementing an EFT task. Overall, it is concluded that EFT does not affect the elicitation in EQ-5D-5L valuation. | Arthur Attema | Valuation | 37470 | Completed | 2022 | 2023 |
| 460-RA | Population health impact of the COVID-19 pandemic (POPCORN): third wave | This research proposal concerns Wave 3 of the Population health impact of the COVID-19 pandemic (POPCORN) study; further indicated with POPCORN-W3. The POPCORN study is a longitudinal study which investigates the effects of the COVID-19 pandemic on health-related quality of life (HRQL) of the general population, and to study the role of socio-economic status and other determinants of HRQL. Wave 1 was April-June 2020 and Wave 2 was May-June 2021. POPCORN-W3 will collect HRQL data, by a.o. EQ-5D-5L in six of the nine countries of POPCORN-W1. It is timed two years after W1, the start of the COVID-19 pandemic. The study design permits cross-sectional analysis and individual partial repeat data analysis. The aims of this study are to (1) assess HRQL, measured by EQ-5D-5L, two years after the start of the COVID-19 pandemic of the persons from the general population of six countries and investigate country level (CF) and individual (IF) factors associated with lower HRQL; and (2) assess change in HRQL among 3 strata: (1) COVID-19 patients, (2) patients with chronic condition(s), and (3) healthy participants and investigate CF and IF factors favoring positive change. CF include socioeconomic impact, stringency of measures and vaccination strategy. IF include level of/change in social position, living situation, medical/chronic disease status including vaccination. Methods: a web-based survey among respondents of POPCORN-W1; we expect about 35% response from W1. Deliverables: Two scientific papers that will be submitted to peer-reviewed scientific journals and a presentation at the EuroQol Plenary/Academy meeting and at the HISIG. | Juanita Haagsma | Populations and Health Systems | 111160 | Ongoing | 2022 | 2024 |
| 449-RA | Assessing the health of Ethiopian Adolescents using the EQ-5D-Y-3L: A cross-sectional study | Introduction: Health-Related Quality of Life (HRQoL) is a multi-dimensional, which typically assesses peoples’ health across a number of dimensions (e.g., physical, psychological, and social). As for the adult populations, assessing the HRQoL of youth populations is important in public health to monitor population health over time, identify groups with a risk of poor health, and evaluate treatments. Currently, the child-friendly HRQoL instrument, the EQ-5D-Y, is receiving more attention. However, in resource-limited, low-income countries (e.g. Ethiopia), the use of the EQ-5D-Y or other HRQoL instruments has been limited hence, this study explores new opportunities in using the instrument in this context. This study aimed to describe HRQoL among adolescents in Ethiopia using the EQ-5D-Y-3L instrument. Methods: A cross-sectional study was conducted to collect data among adolescent students, aged 12-17 years. Adolescents were recruited from both public and private schools in Addis Ababa, Ethiopia. Data were collected using a prepared data collection pack which included: the EQ-5D-Y-3L and EQ-5D-Y-5L (including the VAS), questions about self-rated health, mental distress, disease, and students’ self-reported socioeconomic status (SES). Multiple logistic and multiple linear regression analyses were used to assess associations between socio-demographic characteristics and the reported problems across the EQ-5D-Y-3L dimensions and the VAS score respectively. Data was analyzed using SPSS version 26. Results: A total of 4,677 adolescents (2,176 boys and 2,501 girls) with a mean age of 14 years (range: 12-17 years) answered the survey. More than one-third (42%) and nearly half (47.3%) of adolescents reported problems in at least one of the EQ-5D-Y-3L and EQ-5D-Y-5L dimensions respectively. Adolescents reported problems in mobility: 4.3%, self-care: 2.4%, usual activity: 8.5%, pain and discomfort: 20.6%, feeling worried, sad, or unhappy: 32.4% dimensions of the EQ-5D-Y-3L. Girls reported more problems in all dimensions, except ‘Mobility’, than boys. Girls and older adolescents (15-17 years) reported more problems with ‘pain or discomfort’ and ‘feeling worried, sad, or unhappy’ compared to boys or younger adolescents respectively. Adolescents with self-reported illness were more likely to report problems in all dimensions of EQ-5D-Y-3L and to have lower VAS scores compared to those not reporting illness. Mental distress (separate questions that asked about feeling stressed or depressed) was found to be associated with decreased VAS scores. SES, educational level, and employment status of the parents were found to be associated with reported HRQoL of adolescents. Conclusion: This study presents how Ethiopian adolescents from the general population report their HRQoL using the EQ-5D-Y-3L instrument. The EQ-5D-Y-3L instrument was able to identify groups of adolescents with lower HRQoL, as age, sex, self-reported illness, parent’s educational status, parent’s occupational status, and SES were associated with the adolescent’s health status. The higher response rate and completeness of the instrument indicate the feasibility and usefulness of the instrument among the adolescent population in Ethiopia (a low-middle income country). | Goitom Molalign Takele | Youth | 25000 | Completed | 2022 | 2023 |
| 442-RA | EQ-HWB and EQ-HWB-S in Indonesia: content validity, interviewer administered version, and test-retest | Purpose: The aim of this study was to investigate performance, test-retest reliability, and validity of the interviewer-administered (IA) and self-completion (SC) versions of the EQ-HWB and EQ-HWB-S. Respondents and methods: A longitudinal survey was carried out in Bandung, Indonesia. After translating the two EQ-HWB versions into Indonesian language, we interviewed 300 respondents (200 literate, 50 illiterate-low literacy, and 50 patients) with varying socio-demographics using a think-aloud concurrent protocol. The full sample of literate and patient groups completed both the IA and SC versions, while the illiterate samples completed only the IA version. The IA and SC paper-and-pencil questionnaires included the following outcome measures: EQ-HWB, EQ-5D-5L, Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), along with socio-demographic and clinical characteristic questions. The 25-item EQ-HWB was used, and the EQ-HWB-S responses were derived from it. Index values were calculated using the pilot UK (EQ-HWB-S) and Indonesian (EQ-5D-5L) value sets. The psychometric properties assessed included ceiling and floor effects, convergent validity with corresponding items and scales of other outcome measures, known-group validity (Mann-Whitney U Test), and test-retest reliability (Gwet’s AC2 coefficients and intraclass correlations [ICC]). All respondents completed the EQ-HWB and EQ-HWB-S two times with a 2-week interval for test-retest analysis. Furthermore, known groups were defined by criteria such as full sample with EQ VAS scores < 80 and ≥ 80 and patient vs non-patient sample. Results: Overall, the final sample included 300 respondents (aged 39.22 ± 15.81): 200 literate, 50 illiterate, and 50 patients, with 62.67% females. Among the 25 items of the EQ-HWB, ceiling effects ranged from 24.0% (‘Exhaustion’) to 86.33% (‘Hearing’), with five items showing ceiling effects and four items showing floor effects. The EQ-HWB-S items exhibited lower ceiling effects, with only one item (‘Getting around inside and outside’: 71.67%) showing a ceiling effect and no item displaying a floor effect. At instrument level, 13 respondents (4.33%) reported the best responses on all EQ-HWB items and 24 (8.00%) reported the worst responses on all EQ-HWB-S items, respectively. Excellent agreement was observed when comparing self-completion and interviewer-administered methods, with the highest agreement for items like ‘Getting around inside and outside’ (AC2 = 0.95) and the lowest for ‘Anxiety’ (AC2 = 0.50). Convergent validity was confirmed for conceptually overlapping items, such as EQ-HWB-S 'Getting around inside and outside' and EQ-5D-5L 'Mobility' (r= 0.77), EQ-HWB-S 'Anxiety' and EQ-5D-5L 'Anxiety/Depression' (r = 0.70), and EQ-HWB 'Personal Care' and EQ-5D-5L 'Self-Care' (r = 0.60). EQ-HWB level summary scores also showed strong correlations with the EQ-5D-5L level summary score, EQ-VAS, and WEMWBS. Both EQ-HWB and EQ-HWB-S LSS and index scores showed significant discrimination across groups based on EQ-VAS scores and patient status. Conclusion: This is the first study to validate the EQ-HWB and EQ-HWB-S with both patients and members of the general public in Indonesia. It is also the first to evaluate the performance of these instruments across different literacy levels using IA and SC versions. Our findings contribute to the increasing body of positive psychometric evidence supporting the EQ-HWB and EQ-HWB-S. | Fredrick Dermawan Purba | EQ-HWB | 24825 | Ongoing | 2022 | 2024 |
| 429-RA | Assessing the suitability of the EQ-5D-Y for children and adolescents with intellectual disability | Background: Approximately 3% of children worldwide have intellectual disability (ID). This population is highly heterogeneous. These children have poorer health-related quality of life (HRQoL) and higher healthcare costs than the general population, as ID is associated with various co-morbidities, (e.g., behaviour disorders, epilepsy). Aims: To examine the test-retest reliability, concurrent validity, and content validity of the EQ-5D-Y-5L for children with ID. Methods: There were 2 studies: a survey and a qualitative interview study. In the survey study, caregivers of children with ID were invited to complete an online questionnaire. To examine the concurrent validity of the EQ-5D-Y-5L, the questionnaire included the EQ-5D-Y-5L and scales validated for children with ID, for each of the 5 dimensions of Mobility (MO); Self-Care (SC); Usual Activities (UA); Pain and Discomfort (PD); and worry, sadness, unhappiness (AD), as well as an overall measure of HRQoL: the Quality of Life Inventory-Disability (QI-Disability). To examine test-retest reliability, a subgroup of participants completed the EQ-5D-Y-5L again within a month. The qualitative interview study involved cognitive think-aloud interviews with caregivers of children with ID. Participants completed the EQ-5D-Y-5L for their child while commenting on the rationale for their scores. They were also asked about the content validity (relevance, comprehensibility, and comprehensiveness) of the questions for this population. Results: The survey was completed by 234 caregivers of children with ID (aged 4–17 years), 21 of whom completed the EQ-5D-Y-5L twice, on average 18.6 days apart (range: 9-32 days). Qualitative interviews were completed with caregivers of 28 children with ID (aged 8–22 years). Survey data indicated that: • test-retest reliability was moderate to excellent for the 5 EQ-5D-Y-5L dimensions, but poor for the 100-point EQ-5D-Y-5L visual analogue scale (VAS). • concurrent validity was moderate to good for MO, SC, PD, AD, and VAS, but poor to moderate for UA. Interview data indicated that: • comprehensibility was excellent for all questions. • participants considered that UA, PD, AD were all relevant to HRQoL, but opinions differed regarding the relevance of MO and SC. • mapping of rationales for responses to EQ-5D-Y-5L scores was moderate to good for all but the VAS. • interview participants thought the EQ-5D-Y-5L insufficiently comprehensive to capture the HRQoL of children with ID, and recommended adding questions about communication, social engagement, supports and equipment required, and broader questions about mental health. Conclusions: The EQ-5D-Y-5L is a brief measure of HRQoL for children with ID that is easy to understand and complete. It has generally moderate concurrent validity against ID-specific scales. Test-retest reliability may be affected by true fluctuations in health states in this population. It lacks the comprehensiveness of longer scales, and may usefully be supplemented by additional questions about communication, social engagement, supports, and mental health. | Jenny Downs | Descriptive Systems, Youth | 69921 | Completed | 2022 | 2023 |
| 444-RA | Comparing the psychometric properties of the EQ-5D-3L and EQ-5D-5L in Chinese patients with pompe disease | Objective: The objective of this study was to evaluate the psychometric properties of the EQ-5D (3L and 5L) and SF-6Dv2 in a group of Chinese patients with Pompe disease (PD). The secondary aim was to compare the performance of these three measures in this patient group. Methods: The data used in this study were obtained from a web-based and cross-sectional survey conducted in China. The research team collaborated with the China PD Care Center to recruit participants from its internal network. All participants completed the 3L, 5L, and SF-6Dv2. Information about their sociodemographic status and health conditions was also collected. The measurement properties were assessed by ceiling and floor effects, convergent validity, known-group validity, and test-retest reliability. Results: A total of 117 PD patients completed the questionnaire, resulting in a response rate of 87.3%. Five dimensions of the 3L showed strong ceiling effects. All three measures showed good test-retest reliability, with four out of five dimensions of 3L showing very good agreement. The dimensions of 3L, 5L, and SF-6Dv2 were significantly correlated with all hypothesized items of WHODAS, indicating satisfactory convergent validity. The F-statistic confirmed that the 5L had stronger discriminant ability than the 3L and SF-6Dv2. Conclusions: The EQ-5D-5L demonstrates better psychometric properties than the SF-6Dv2 and EQ-5D-3L for measuring HRQoL in Chinese patients with PD. | Ricahrd Xu | Descriptive Systems | 24160 | Completed | 2022 | 2023 |
| 450-RA | Developing tools (Stata, R and Excel) for calculating utility values, analysing and reporting data from the EQ-5D family of instruments | We have developed a suite of tools, called EQ-5D Suite Tools Kit, which are designed to calculate EQ-5D utility values and facilitate the analysis of EQ-5D data. These tools are available for use in Stata, R, and Excel. Using the EQ-5D Suite Tools Kit, EQ-5D utility values can be easily calculated based on individual responses from the EQ-5D instruments. We have incorporated all published value sets from the EuroQol website up until the completion of this project as default value sets. These default value sets include 35 for the EQ-5D-3L, 29 for the EQ-5D-5L, and 4 for the EQ-5D-Y. Users can also calculate direct utilities using their own user-added value sets, as well as employ the original crosswalk or the recently developed reverse crosswalk to estimate crosswalk utilities. The EQ-5D Suite Tools Kit allow users to conduct analyses of EQ-5D data in accordance with the recommended guidelines set out in the book "Methods for analysing and reporting EQ-5D data". These guidelines include the analysis of three different types of EQ-5D data generated by the questionnaire, including the EQ-5D profile, the EQ Visual Analogue Scale (VAS), and the EQ-5D utility index values. | Juan M. Ramos-Goñi | Descriptive Systems, Populations and Health Systems, Youth, Education and Outreach | 78320 | Completed | 2022 | 2023 |
| 432-RA | Using the online personal utility functions (OPUF) tool to explore issues in the valuation of EQ-5D-Y | Background The choice of perspective in valuation tasks is likely to impact the scale of EQ-5D-Y-3L value sets, but less is known about how it impacts the relative importance of different dimensions. The aim of this study was to examine how preferences for EQ-5D-Y-3L health states differ using different perspectives, utilising two methods: the Online elicitation of Personal Utility Functions (OPUF) tool and a discrete choice experiment (DCE). An additional objective was to compare results from the OPUF tool and the DCE. Methods An online survey was designed containing the OPUF tool and a DCE. Adult respondents from the United Kingdom were randomised to one of five different arms: (1) 4-year-old child; (2) 10-year-old child; (3) a child of unspecified age; (4) another adult; and (5) own health. The characteristics of the OPUF value sets for the five perspectives, and relative importance scores from the DCE data were compared. Results Results differed by perspective in both valuation tasks. In both tasks, ‘looking after myself’ was less important and ‘pain or discomfort’ was more important in the child perspectives compared to the adult perspectives. Relative importance scores were far more varied in the DCE results compared to the OPUF results. The scale of the value sets produced by the OPUF tool differed by perspective, with the value of the worst health state being significantly lower in the adult perspectives compared to the child perspectives. Conclusion Our results suggest that the valuation of EQ-5D-Y-3L is impacted by the perspective that adult respondents are required to take. It is also clear that DCE and the OPUF tool produce different results. | David Mott | Valuation, Youth | 72150 | Ongoing | 2022 | 2024 |
| 462-RA | EQ-5D 3L in the 2017 National Health Survey for Chile | The Chilean National Health Survey (ENS) is part of the Comprehensive Social Protection System that the Government is promoting. It is a powerful tool used by the Chilean Ministry of Health (MoH) to find out what diseases and what treatments men and women aged 15 years + living in Chile are receiving. The information provided by this survey is of vital importance to formulate prevention plans, care and health policies for people who need it. A team of more than 100 interviewers and nurses surveyed the field in the 15 regions of the country in urban and rural areas, applying questionnaires and medical examinations at the homes of the selected people (N~6000). On the 2017 ENS version, the MoH has made an enormous effort, incorporating the measurement of approximately 60 health problems along with the main risk factors, protectors and their determinants in people's health. EQ-5D 3L questionnaire was also included in this round, along side biometric measures and biomarkers obtained form blood and urinary samples. Researchers from the MoH (Health Technology Assessment Unit) have contacted me to ask for methodological support to estimate EQ-5D population norms for several subgroups. The MoH also need to know how often it would be convenient to include a questionnaire such as EQ-5D to estimate population health. The main aim of this research proposal is to estimate official EQ-5D 3L population norms according to the need of the MoH doing a preliminary analysis of the data and drafting a research agenda for future research projects. | Victor Zarate | Populations and Health Systems | 14840 | Ongoing | 2021 | 2024 |
| 426-RA | Health-Related Quality of Life in children dependent on technology for breathing | Objectives: Medical advancement has enabled children to survive congenital airway anomalies, rare diseases and critical illnesses with medical technology including tracheostomies and long-term ventilation to support breathing. The number of technology-dependent children is increasing globally with the increased use of healthcare services. This study aimed to assess 1) the psychometric performance, of the EQ-5D-Y-3L (Y-3L), EQ-5D-Y-5L (Y-5L) (proxy and self-report) and EQ-TIPS in children dependent on technology in South Africa and 2) the impact of caring for these children was assessed with the EQ-5D-5L and CarerQoL. Methods: Caregivers and children, where possible, completed the EQ-TIPS or Y-3L and Y-5L, PedsQL and Paediatric Tracheostomy Health Status Instrument (PTHSI) to reflect the child’s health. In addition caregivers self-completed socio-demographic information, EQ-5D-5L and CarerQoL to reflect their own health and burden of caring for the child. Concurrent validity of the EQ-TIPS, Y-3L and Y-5L was examined with the association to PedsQL and PTHSI scores with Pearson’s correlations. The median HRQoL scores were compared across known socio-demographic and clinical variables with Kruskal-Wallis H-test. The redistribution of Proxy and self-report Y-3L and Y-5L responses were examined for inconsistency of responses and discriminatory power as reported on the Shannon’s H’ and J’ index. Inter-rater reliability of the Y-3L, Y-5L and PedsQL scores were compared by weighted kappa, Intra-class correlation coefficients and Pearson’s correlation. The association between caregiver scores, on the EQ-5D-5L, CarerQoL and PTHSI caregiver score, and caregiver and child scores were computed with Spearman’s correlation. The median Caregiver scores were compared across known socio-demographic variables and clinical variables related to their child with the Kruskal-Wallis H-test. Results: Responses from 144 caregivers were collected, 66 for children aged 1 month to 4 years completing EQ-TIPS and 78 for children aged 5-18 years completing Y-3L and Y-5L. The EQ-TIPS showed a higher report of no problems for social interaction for children aged 1-12 months (p=0.040), there were however no age related differences in the LSS or EQ VAS scores. EQ-TIPS showed strong association to the PedsQL scores except for a moderate association with the emotional functioning score. EQ-TIPS median LSS was able to differentiate between groups on clinical prognosis with a better HRQoL in those where weaning from technology is possible compared to those where it is not possible (H=18.98, p=0.011). The inter-rater reliability was similarly moderate for both the Y-3L and Y-5L dimensions with the greatest agreement between dimensions of mobility and looking after myself on the Y-3L. The inter-rater reliability of the PedsQL was generally low with the best agreement on the psychosocial summary score (ICC=0.56). Inconsistencies when moving between the Y-3L and Y-5L were higher for child self-report compared to proxy report with 33% of self-report inconsistencies attribute to a lot of problems on the Y-3L and a little bit of problems on the Y-5L. The proxy versions showed greater discriminatory power (ΔH’=-20.0) and spread of responses on the Y-5L (ΔJ’=-13.7) when compared to the self-report versions (ΔH’=-17.6; ΔJ’=11.0). Despite a good average change in discriminatory power for the self-complete version this was specifically related to dimensions of mobility and looking after myself with a corresponding poor spread of responses for mobility and worried, sad or unhappy. The concurrent validity of the Y-3L and Y-5L was moderate to strong for both the Y-3L and Y-5L proxy and self-complete versions. The median Y-3L and Y-5L LSS proxy scores were able to discriminate between groups with different clinical severity whereas only the Y-3L LSS self-complete was able to discriminate. Caregiver and child HRQoL scores showed moderate to strong associations. Conclusion: Further investigation into the EQ-TIPS dimension of social interaction is warranted for both the understanding of the current wording and the appropriateness for young children aged 1-12 months. The EQ-TIPS, Y-3L and Y-5L were all able to differentiate between children with known clinical variables and outperformed both the PedsQL and PTHSI. The Proxy versions of the Y-3L and Y-5L showed better psychometric performance than the self-report versions. This was most notable with the high inconsistency of responses between the Y-3L and Y-5L and the poor distribution of responses on the Y-5L self-report versions. This may indicate that children in this cohort may be able to better express their health on the Y-3L version. The caregiver scores are associated with the child HRQoL scores and thus this spill over should be accounted for in any interventions targeting this cohort. It is recommended that future studies investigate the reliability and responsiveness of these measures in children dependent on technology for breathing. | Janine Verstraete | Youth | 38855 | Completed | 2021 | 2023 |
| 428-RA | Understanding the ceiling effects phenomenon of EQ-5D instruments: a systematic investigation into possible reasons, existing evidence, and future research directions and priorities | **Background ** Research investigating health-related quality of life in general populations using EQ-5D instruments have observed ceiling effects of EQ-5D data. China appears to be the country that suffers most from these ceiling effects, which may undermine the credibility of EQ-5D instruments in this important market. Studies have suggested potential reasons such as culture-specific concepts of heath and reporting styles, the EQ-5D questionnaire wording and phrasing, and specific issues with the mode of administration used in data collection. However, very little empirical research has been conducted to investigate the potential reasons behind this phenomenon in general and why it is particularly high in China. **Aim** This proposed project aims to address the ceiling effect phenomenon highlighted in the Descriptive System WG’s request for proposals. Specifically, (1) to develop a general conceptual framework for understanding the ceiling effects in different populations, and (2) to analyse reasons contributing to the high ceiling effect in China; to summarise existing evidence; and generate testable hypotheses and practical strategies to address the issue. **Method** The proposed method for (1) developing the framework is by reviewing EQ-5D literature and literatures in health, culture, psychology, and philosophy that may help explain the ceiling effect phenomenon of EQ-5D and though panel discussion. The method for (2) studying ceiling effect in China is through conducting a scoping review guided by the framework. Findings in the scoping review will be used to improve the framework which can be used to expand guide the scoping review. | Tianxin Pan | Descriptive Systems | 46540 | Ongoing | 2023 | 2025 |
| 452-RA | Behavioural Groups for composite TTO data | For TTO, the common utility model used in health state valuation is 𝑈𝑖𝑗 = 𝑉𝑗 + 𝜀𝑖𝑗 , where i indicates respondent and j indicates health state. This model assumes that that all respondents have the same underlying values 𝑉𝑗 and that all variability in the observations is due to random error 𝜀𝑖𝑗. However, we know that preference heterogeneity is present in TTO data, for example, some respondents give worse than dead responses, while others don’t. The aim of the study is to investigate the preference heterogeneity present in EQ-VT composite TTO data, by using machine learning algorithms in order to identify groups of respondents with different data patterns. Specifically, cluster analysis will be used to analyse response patterns in the TTO data with respect to scale use, and with respect to domain preference. Estimating regression models separately for these groups will allow us to explore differences in preference structures and investigate if there are interaction terms that are important for particular groups of respondents, but that are hidden when all data is analysed jointly. Furthermore, we will investigate if the structures and interaction terms found in the TTO data are also present in the DCE data. Lastly, we aim to assess the robustness and generalisability of the method and results by applying them across EQ-VT studies in multiple countries. | Mark Oppe | Valuation | 45760 | Ongoing | 2022 | 2024 |
| 415-RA | Modelling interactions in the EQ-5D descriptive system | **OBJECTIVES:** To introduce a parsimonious modelling approach that enables the estimation of interaction effects in health state valuation studies. **METHODS:** Instead of supplementing a main effects model with interactions between each and every level, a more parsimonious optimal scaling approach is proposed. This approach is based on the mapping of the health levels in each domain onto domain-specific continuous scales. The attractiveness of each health state is then determined by the importance-weighted optimal scales but also by the interactions between these domain-specific scales. Accordingly, the number of interaction terms in the optimal scaling model only depends on the number of health domains, not on the number of levels for each domain. As a result, this modelling approach is also suitable for larger health-related quality of life instruments. **EMPIRICAL APPLICATION:** The proposed model with and without interactions is fitted on an existing dataset of N=3,699 respondents who each completed 16 EQ-5D-3L discrete choice tasks. **RESULTS:** The optimal scaling model with interactions clearly outperforms the model without interactions in terms of model fit statistics. Strong interactions between the EQ health domains are found and these confirm that the accumulation of health problems within health states has a decreasing marginal effect on the health states’ values. **CONCLUSIONS:** The proposed interaction model is conceptually elegant, produces estimates that are straight-forward to interpret, and accommodates the estimation of interactions in health state valuation studies for which it was thus far not feasible to include interactions. | Marcel Jonker | Descriptive Systems | 25000 | Completed | 2021 | 2022 |
| 416-RA | Mind the gap. Psychological distance in EQ-5D-Y valuation | Objectives Earlier work demonstrated that the time trade-off (TTO) method generates higher utilities when a 10-year child’s perspective is used in the EQ-5D-Y valuation compared to the adult perspective. However, prior studies did not apply existing theoretical frameworks to examine the underlying reason why different perspectives impact valuation. In this study, we employed construal level theory (CLT) to explore how the child and adult perspectives impact valuation in EQ-5D-Y. Specifically, we aimed to investigate how four facets of psychological distance modelled in CLT (social, temporal, spatial, and hypothetical) could affect the mean, variance, and internal validity of EQ-5D-Y utilities. Methods Online computer-assisted personal composite TTO (cTTO) interviews were conducted with a sample of 150 adults from the UK. Each respondent valued four health states in perspectives that were comprised of a combination of different levels of four facets of the psychological distance. We created low or high psychological distance by asking respondents to complete TTO tasks for, i) themselves (low social distance) or others (high social distance), ii) people at their own age (low temporal distance) or 10-year-old children (high temporal distance), iii) people in their own city (low spatial distance), or elsewhere (high spatial distance), iv) health states they were familiar with (low hypothetical distance) or unfamiliar with (high hypothetical distance). These different perspectives were combined in a factorial design to estimate the unique contribution of each distance to EQ-5D-Y valuation. Results Our findings show that mean utilities tend to increase as the psychological distance becomes higher, although the strength and magnitude of that effect depends on which dimension of social distance is increased. Furthermore, in line with predictions based on CLT, lower variance is observed in higher (social and temporal distance as respondents may think more abstractly when subjects are further away, resulting in less disagreement. Data quality is not affected when psychological distance increases from low to high in all dimensions. Conclusions In conclusion, the increased psychological distance introduced with the EQ-5D-Y valuation perspective (compared to adults’ valuation), as understood from CLT, may explain why utilities have been found to differ between perspective. | Stefan Lipman | Valuation, Youth | 24890 | Completed | 2022 | 2023 |
| 402-RA | The ceiling effects of EQ-5D in general population health surveys: A systematic review and meta-regression | Objectives: This review aims to examine the ceiling effects of EQ-5D-3L (3L) and EQ-5D-5L (5L) in general adult populations and identify the factors influencing these effects. Methods: We searched 8 databases for observational studies published in English from inception to 24 July 2023. Ceiling effects were calculated by dividing the number of participants reporting full health at dimension or profile level by the total sample size. Subgroup analysis and meta-regression using the metafor package in R software were performed. Results: We identified 94 studies from 70 articles, including 4 543 647 adults across 37 countries. The global pooled proportion of individuals reporting full health ("11111") was 56% (95% CI 51%-62%) for 3L and 49% (95% CI 44%-54%) for 5L. The self-care dimension showed the highest ceiling effects (3L: 97%; 5L: 94%), whereas pain/discomfort had the lowest (3L: 69%; 5L: 60%). The ceiling effects in East/South-East Asia were higher than in Europe by 25% (95% CI 18%-32%) in 3L and 9% (95% CI -2%-20%) in 5L. Adjusting for mean age and proportion of males, significant regional differences persisted in the overall profile level of 3L, in all 3L dimensions (except for self-care), and 5L dimensions (except for pain/discomfort and anxiety/depression). Conclusions: This review highlights significant ceiling effects in the EQ-5D, especially in Asian populations. The 5L version exhibited fewer ceiling effects than the 3L, indicating its superiority for general population surveys. Further research is crucial to understand the disparities in self-reported health outcomes between Asians and other populations. | Nan Luo | Descriptive Systems | 25000 | Completed | 2021 | 2022 |
| 420-RA | CORFU: a COVID-19 follow-up study | Background: Many patients who have had a COVID-19 infection keep reporting complaints months after infection, even those with a relatively mild infection. These complaints in formerly COVID-19 patients can have a significant impact on quality of life. Long-term complaints are prevalent in former COVID-19 patients ranging from those who had a mild infection without hospital admission to those who have had mechanical ventilation at the ICU ward. Aims: The aim of this project is to focus on long term complaints up to 2 years after infection. Sub-aims of the study for which data of the POPCORN cohort will be used are: 1) describing the prevalence and nature of long-term complaints after COVID-19 infection up to two years after, and in relation to health-related quality of life; and 2) development of a prediction model to be able to estimate an individual’s probability of long-term complaints using readily-available predictors. Both aims will help to understand the usefulness of the EQ-5D-5L in assessing HRQoL in patients who continue to experience symptoms after COVID-19 and it application in prediction models of long COVID. Deliverables: Two scientific papers that will be submitted to peer-reviewed scientific journals. | Juanita Haagsma | Populations and Health Systems | 15660 | Ongoing | 2022 | 2024 |
| 401-RA | Evaluating the Content Validity of the EQ-5D-Y for Chinese Children and Adolescents | Introduction Health-related quality of life (HRQOL) is key for assessing healthcare outcomes in children and adolescents. The EQ-5D-Y-3L, adapted from the adult version, is widely used to measure HRQOL among 8-18 year-olds. Despite its effectiveness, concerns about its content validity persist, particularly in Chinese populations. This study evaluates the EQ-5D-Y's content validity in China, focusing on the comprehensiveness, relevance, and comprehensibility of its dimensions among both healthy and diseased children. Methods A qualitative study was conducted with 30 participants (15 healthy, 15 diseased) aged 8-18 in Shanghai, China. The interviews explored participants' perspectives on the EQ-5D-Y's five dimensions, guided by the World Health Organization’s (WHO) definition of health. Data were analyzed using a framework approach, with response challenges identified through an adapted model of response issues. Results A total of 126 codes were generated, with 87 retained and categorized into three themes: physical (n=16), mental (n=30), and social health (n=4). While responses reflected all five EQ-5D-Y dimensions, social health was notably mentioned as crucial but is absent in the EQ-5D-Y. Participants suggested enhancements in mental health coverage and more specific examples for the current dimensions. Conclusion The EQ-5D-Y is relevant for assessing HRQOL in Chinese children and adolescents but requires improvements, especially in incorporating social health. Enhancing question clarity and specificity could also improve its effectiveness. These findings guide potential refinements to better capture the health experiences of children. Discussions We focused on several key points in our analysis: First, although social health was not included in the questionnaire, it was frequently mentioned by participants, prompting an investigation into why children deem it important. Second, we compared specific concepts from this study with children's scales from other countries, noting that while many are not covered by the EQ-5D-Y, they appear in other health-related quality of life scales for children. We also explored why certain concepts are absent from the EQ-5D-Y. Third, during our discussion on face validity, we identified a significant issue: many children struggle to differentiate between the self-care and daily living dimensions, leading to an analysis of the underlying reasons. Moreover, this is the first article to assess the content validity of the EQ-5D-Y, showing that children, regardless of age, can effectively communicate health concerns influenced more by illness than age. Lastly, we noted similarities and differences with the adult framework. | pei wang | Youth | 18800 | Ongoing | 2021 | 2024 |
| 396-RA | Correspondence between directly-reported and recalled HRQoL collected at 1 week, 1month and 2 months post-diabetic ketoacidosis: from patients and proxies perspective (Resubmission) | Introduction: Diabetic ketoacidosis results in adverse neurocognitive outcomes which lead to decreased HRQoL. Retrospective assessment of pre-event HRQoL is frequently used to measure change from pre- to post-event of HRQoL. However, retrospective measurement may be confounded by recall bias. Recall bias can be influenced by the measurement scale or the instrument that is used, the measurement schedule, and the presence of a substantial health event during the follow up period. Therefore, the present study will assess whether the EQ-5D-5L would be used to measure HRQoL in recall situations of acute disease conditions. Objectives: It will evaluate the correspondence between directly-reported EQ-5D summary and EQ-VAS scores collected at 1 week (T1) and 1 month (T2) post-DKA, and recalled scores of 1 week (T1) collected at 1 month (T2) and 2 months (T3) post-DKA, and recalled scores of 1 month (T2) collected at 2 months (T3) from patients and proxies. Methods: 200 patients with DKA and 200 proxies will be recruited from September to December 2021. The EQ-5D-5L tool, which is under development into Tigrinya language (under cognitive debriefing phase, TRF2225), will be used for data collection via a postal invitation and phone call to non-responders. We will compute paired t-test and Intraclass correlation coefficient to compare T1–T2, T1–T3, and T2–T3 correspondence of direct (i.e., the EQ-5D outcome at that moment) versus recalled outcomes for the EQ-5D summary, the dimensions, and the EQ-VAS scores separately for patients and their proxies. Overall P-values< 0.05 will be considered as statistically significant. | Afewerki Gebremeskel | Descriptive Systems | 24620 | Ongoing | 2022 | 2025 |
| 409-RA | Developing a value set for the EQ-5D-Y-3L in the United States | This US valuation study for the EQ-5D-Y-3L was kicked off during early 2022 upon grant approval. It was designed as a two-phased study with Phase I being the US stakeholder engagement and Phase II the valuation task. IRB was immediately secured from the University of San Francisco (#1780). Stakeholder meeting was designed, organized and then executed on April 7th, 2022. Subsequently, the stakeholder meeting paper was published in Pharmacoeconomics in December 2022. Phase II valuation design adopted US stakeholders’ recommendations for including children directly in the study. The DCE design followed the International Protocol but collected preference data from both adolescents and adults. We compared and analyzed adults’ and adolescents’ DCE data descriptively and quantitatively. The descriptive comparison of the adults and adolescents’ data was presented at the EuroQol Academy meeting in Milan (March 2023) as a paper presentation. Findings suggested that adolescents had more dominant pair violations, especially for younger adolescents aged 11-14 years. Hence, among other traits, QC violations could be reduced by including older adolescents (age 14-17). Quantitative comparison between adults and adolescents were conducted using latent class analyses (LCA). Findings from the LCA suggested that adolescents tended to contribute weaker and less informative preferences, resulting a lower contribution to an estimated value set should their responses to be combined with those from adults. The LCA findings were presented as paper at EuroQol 40th Plenary meeting in Rome (September 2023) and as poster at ISPOR EU 2023 in Copenhagen (November 2023). The final value set used a combined adult/adolescent model, weighted based on census data to represent the US population by age category and sex. Estimated utilities for state 33333 to 12111 ranged from 0.00-0.97. Pain/discomfort was the most important dimension for the youth in the US, followed by feeling worried/sad/unhappy. The final value set will be presented at ISPOR US 2024 and the manuscript is currently being developed. | Ning Yan Gu | Valuation, Youth | 184380 | Completed | 2021 | 2023 |
| 398-RA | To what extent does EQ-5D reflect the health concepts of Chinese: a scoping review | Introduction Health-related quality of life (HRQoL) is a multi-dimensional definition that can be used to assess the impact of healthcare interventions. Although recent research has proposed that HRQoL may be culturally specific in China, limited studies to date have examined how the description and measurement of HRQoL in China differs from other cultural contexts. This study aims to explore how HRQoL is defined in the context of Chinese culture by systematically reviewing published studies on the Chinese understanding of HRQoL. Method We conducted a systematic literature search in three Chinese databases and four English databases, including studies that: a) developed HRQoL measures in a Chinese cultural context; b) discussed the definition of HRQoL in a Chinese cultural context or constructed a conceptual framework of HRQoL specifically for Chinese culture; c) conducted qualitative interviews exploring how Chinese people conceptualize HRQoL. Results Two conceptual frameworks of HRQoL were identified in China. From the perspective of Traditional Chinese Medicine (TCM), the descriptions of HRQoL were based on the theory of Yin and Yang, where health is the result of the balance between the Yin and Yang of the world and people themselves. Based on the theory of Yin and Yang, the most common concepts that were used in describing HRQoL were: 1) ‘xingshentongyi’, which represents the unity of the body (e.g. ‘complexion’) and spirit (e.g. ‘energy’); 2) ‘tianrenheyi’, which refers to the harmony between man and nature (e.g. ‘climate adjustment’); 3) ‘qiqing’, which describes the seven forms of emotions (e.g. ‘joy’ and ‘fear’). Apart from the perspective of Traditional Chinese Medicine, Chinese literature on HRQoL is typically related to the WHO definition of health, which is composed of physical, mental, and social aspects. These descriptions of HRQoL had significant overlap with the descriptive system of EQ-5D, although some health concepts, including adaptability to natural environments, emotional experiences, and cognitive function, were also added. Conclusion The concept of HRQoL in China is not unified, but rather twofold. In addition to a framework based on TCM, there is also a framework that was built based on the WHO definition of health. This can shed light on the complex nature of HRQoL in China and can inform future health measurement studies in China. | Zhuxin Mao | Descriptive Systems | 21240 | Completed | 2021 | 2022 |
| 234-VS | Valuing Health-Related Quality of Life: Developing an EQ-5D-5L Value Set for Ghana | Introduction: The Ghanaian Ministry of Health and other stakeholders of health have initiated the process of requiring Health Technology Assessment (HTA) as a formal process for priority setting in Ghana. Progress made include an HTA pilot study, establishment of an HTA working group and development of a reference case to guide the conduct of economic evaluation as part of the HTA guidelines, which recommends the conduct of cost-utility analysis for health technologies using outcomes that include quality-adjusted life years (QALYs). There is no national value set available for the Ghanaian population to be used in estimating QALYs. The institutionalization and rise of HTA in the country necessitate that a value set be developed to allow estimation of QALYs to support HTA. This study therefore aimed to develop a value set for Ghana by eliciting Ghanaian general preferences using the EQ-5D-5L instrument. Methods: The study collected face-to-face preference data from 300 adult participants across three regions of Ghana using the adapted version of the EuroQol valuation technology (EQ-VT) standardised valuation protocol developed specifically for EQ-5D-5L valuation studies using composite time trade-off (cTTO) and discrete-choice experiments (DCEs). Additional qualitative data was collected to explore the ‘worse than death’ hypothesis to understand the contextual ‘value of life’ in Ghana and factors influencing respondents’ decision to opt to die rather than live in a particular health state. Different preference models were generated using both the cTTO and DCE data, either individually or together to provide complementary results on respondents’ utility preferences. Models explored were generalised least squares, Tobit, heteroskedastic, logit and hybrid. The best fitting model was selected for the value set based on its ability to account for the left censored and heteroscedasticity that was a feature of the data collected, logical consistency and on the statistical significance of the parameters. Inductive thematic analysis was used to analyse the qualitative data. Results: The 300 interviews provided 4500 cTTO responses and 4200 DCE responses. The demographic characteristics of respondents were representative of the Ghanaian population for religious background, level of education and marital status. It was not representative of the distribution of gender in Ghana. The preferred model chosen for the Ghana value set was Hybrid Tobit, random effect heteroscedastic, constrained model. The predicted value for the worst attainable health on the EQ-5D-5L (i.e. health state 55555) was -0.493 and that of the best health state (11112; except full health) was 0.969. The largest decrement was registered for level 5 mobility (0.369) followed by pain/discomfort (0.312), self-care (0.273), anxiety/depression (0.271) and usual activities (0.268). Findings from the qualitative study showed that health states perceived as ‘worse than death’ were those associated with impairment in mobility and anxiety/depression and pain/discomfort. Respondents preferred death under these circumstances because they wanted to avoid the financial burden on themselves and family, time spent in care giving by family, loss of personhood and loss of social status. Health and wellbeing were perceived as absence of illness and access to food. Conclusion: This is the first Ghanaian EQ-5D-5L value set based on social preference derived for a nationally representative sample in Ghana. The value set will play a key role in the institutionalization of HTA in Ghana and the use of economic evaluation studies to inform priority setting where different health technologies can be compared. The HTA working group has welcomed the findings of this study and have suggested dissemination to the broader stakeholders of health through a seminar or workshop. | Brendan Mulhern | Valuation | 55779 | Completed | 2021 | 2023 |
| 299-RA | Validation of EQ-5D-5L in critical care (EuroQoL Working Groups Project Request for Proposal) | Critical care research typically reports outcomes which are patient-important, specifically mortality and morbidity. However, healthcare providers, patients and families are not only interested in patient survival, but also health-related quality-of-life (HRQoL) before, during and after critical care. Prior critical care research has not routinely described patient-reported outcomes like HRQoL. Patient-reported health utility can be elicited using various indirect, generic preference-based value measures. The most common generic method is the EQ-5D-5L. It has advantages including accuracy at low utilities compared to other HRQoL tools, no licensing fee for non-commercial use, and a built-in visual analog scale (VAS) for self-rating a patient’s health status. It’s more user-friendly than other instruments (e.g. SF-36). EQ-5D-5L has proxy instruments in addition to patient-reported instruments. Measuring baseline HRQoL in critically ill patients can be used to predict potential downstream outcomes. Prior research has shown that low HRQoL prior to critical care admission is associated with a grim prognosis in terms of survival, and leads to deterioration in the HRQoL post-discharge (23–28). The EQ-5D-5L has not been previously validated in critical care. Patient-reported outcomes like HRQoL and quality-adjusted life-years (QALYs) are being increasing used and recognized as important endpoints to measure. With more patients surviving their critical illness, documenting ICU survivors HRQoL (patient-reported psycho-social and physical functional domains) becomes important in its own right. Therefore, the objectives of this proposal are to: (1) validate the EQ-5D-5L-5L in the critical care setting; and (2) compare proxy and self-complete versions of the EQ-5D-5L-5L in critically ill patients. | Vincent Lau | Descriptive Systems, Valuation, Populations and Health Systems | 39680 | Ongoing | 2021 | 2025 |
| 370-RA | A research programme to support and strengthen the use of EQ-5D instruments in China | Most of the existing studies that use EQ-5D to assess population health in China have observed high ceiling effects, approximately 80% when using EQ-5D-3L (‘3L’). In China, large-scale population surveys are conducted using face-to-face interviews. One hypothesis is that administering HRQoL questionnaires via face-to-face interviews in large-scale population surveys contributes to the high ceiling effects. However, there has been little research to investigate the impact of interviewer administration on the characteristics of the data or to explore potential strategies to improve data collection procedures and data quality. In addition, to date, most large-scale population health survey in China used the 3L version, with limited adoption of the EQ-5D-5L (‘5L’), despite evidence showing its superior performance with respect to lower ceiling effect and better discriminatory power in general population in other countries and among patient groups in China. This project aimed to provide a comprehensive analysis on the impact of mode of administration (MOA) on HRQoL data, and to provide evidence to support the transition from the 3L to the 5L. We conducted a qualitative study including (1) a thematic analysis of interview recordings from the 2020 population health survey (Nanjing CDC Survey) in Nanjing, China to identify how interviewers were administering EQ-5D-3L; and (2) focus group discussions with 10 interviewers from the 2021 Nanjing CDC Survey to explore the reasons for and implications of the interviewer approaches for the characteristics of the resultant EQ-5D data. We found that due to poor comprehension of questions among less educated populations, a lengthy overall survey (in which the EQ-5D questions were positioned toward the end) and interviewers’ lack of knowledge and training about patient-reported outcomes and EQ-5D in particular, there was a very high prevalence of ‘non-standard’ interviewer behaviours and approaches. Indeed, none of the interviewer approaches we observed complied with EuroQol expectations. Based on these findings, we extended the original scope of the project and designed and tested two interventions in the 2023 Nanjing CDC Survey by (1) providing interviewer training on EQ-5D; and (2) re-positioning the EQ-5D questionnaire to the beginning of the overall survey form. Our quantitative evaluation of these strategies showed that providing training to interviewers about the EQ-5D has a significant impact on reducing ceiling effects. However, where interviewers are not trained, it may be an advantage to position EQ-5D questionnaire to the end of the survey questionnaire. Furthermore, working in collaboration with the Nanjing CDC, we conducted parallel data collection of 3L and 5L in a subsample of the 2023 survey. Our analysis of the psychometric performance of the 3L and 5L supported the existing finding that the 5L showed superior performance in reducing ceiling effects, informativity, discriminatory performance. Our finding on the superior performance of 5L over 3L in general population in China adds to the evidence base and support the inclusion of 5L in future general population health surveys in China. Our findings on the impact of data collection procedure on ceiling effects and suggested interventions have important implications for the design and implementation of EQ-5D data collection via face-to-face interview in large-scale population surveys, which is the most commonly used mode of administering the EQ-5D in low-and middle-income countries. | Nancy Devlin | Descriptive Systems, Populations and Health Systems | 143900 | Completed | 2021 | 2024 |
| 389-RA | A head-to-head comparison of measurement properties of EQ-5D-Y-3L and EQ-5D-Y-5L in children and adolescents with heart diseases | Background: Congenital heart disease (CHD) is one of the most common birth defects globally, with a long-term impact on health-related quality of life (HRQoL). Despite the great need, no validated generic preference-based HRQoL instruments are available for pediatric patients with CHD. Recently, EQ-5D-Y-5L was developed to reduce the ceiling effects and to enhance the sensitivity of EQ-5D-Y-3L. However, the evidence comparing the measurement properties of these two instruments is limited, with mixed findings. We aimed to compare the measurement properties of EQ-5D-Y-3L and EQ-5D-Y-5L in pediatric patients (age 8-18 years) with heart diseases. Methods: The study included a total of 221 pediatric outpatients with heart diseases from the two largest public hospitals in Singapore. Patients self-administered EQ-5D-Y-3L, EQ-5D-Y-5L, and PedsQL Generic Core at baseline, 1 month (for test-rest reliability), and 12 months (for responsiveness) from the baseline. The convergent validity of baseline EQ-5D-Y-3L scores (utility index and sum score) and EQ-5D-Y-5L score (sum score) was evaluated with Spearman correlation () with PedsQL Generic Core total score. The discriminatory validity of the baseline scores was assessed by comparing standardized effect size (SES) for the mean difference in scores between heart disease severity levels. Test-retest reliability between baseline and 1-month scores was evaluated using the intraclass correlation coefficient (ICC). Responsiveness of the scores was assessed using standardized response mean (SRM) separately for patients whose general health improved and worsened over 12 months. Results: Among 221 recruited patients, 188 and 169 patients completed 1-month and 12-month follow-ups. The mean age of the patients was 12.8 years, with a similar proportion of boys and girls (47.5% vs 52.5%), and their ethnic distribution was similar to the Singapore general population. The majority of the patients had congenital heart disease (85.1%), followed by heart failure (8.6%), and arrhythmia (8.6%). The distribution of patients’ disease severity was Level 1 (Mild): 38.5%, Level 2: 36.7%, and Level 3/4 (Severe): 24.9%. At the baseline, the ceiling effect was slightly lower in the EQ-5D-Y-5L score (47.5%) than in EQ-5D-Y-3L scores (49.3%). EQ-5D-Y-3L and EQ-5D-Y-5L scores were moderate-to-strongly correlated with the PedsQL Generic Core total score ( 0.55 to 0.60, each p0.65 for EQ-5D-Y-3L scores and >0.70 for the EQ-5D-Y-5L score. Among the improved cohorts based on general health, the EQ-5D-Y-5L score (SRM 0.50) appears to have higher responsiveness than EQ-5D-Y-3L scores (SRM 0.27 to 0.30). However, there was no meaningful change in both EQ-5D-Y-3L and EQ-5D-Y-5L scores for worsened cohorts (each SRM <0.05). Conclusions: Both EQ-5D-Y-3L and EQ-5D-Y-5L have acceptable and comparable measurement properties in terms of discriminative ability, convergent validity, and test-retest reliability to measure HRQoL among pediatric patients with heart diseases. EQ-5D-Y-5L has a slightly lower ceiling effect and slightly higher responsiveness to detect an improvement in health than EQ-5D-Y-3L. Further studies will be required to evaluate responsiveness among patients with deteriorating health over time. | Mihir Gandhi | Youth | 25000 | Ongoing | 2021 | 2025 |
| 377-VS | EQ-5D-5L Slovenia national value set | The aim of this valuation study was to produce a value set to support the use of EQ-5D-5L data in decision making in Slovenia. The study design followed the published EuroQol research protocol, and a quota sample was defined according to age, sex, and region. Overall, 1012 adult respondents completed 10 time trade-off and seven discrete choice experiment tasks in face-to-face interviews. The Tobit model was used to analyse the composite time trade-off (cTTO) data in order to generate values for the 3125 EQ-5D-5L health states. The data showed logical consistency, with more severe states being given lower values. The greatest disutility was shown in the pain/discomfort and anxiety/depression dimensions. In the EQ-5D-5L value set, the values range from -1.09 to 1. With the exception of UA5 (unable to perform usual activities), all other levels on all health dimensions were statistically different from 0 and from each other. Compared with the existing EQ-5D-3L value set, there is a slightly lower share of 'worse than dead' states (32.1% compared with 33.7%) and the minimum value is lower. Results have important implications for users of the EQ-5D-5L in Slovenia and regions. It is a robust and up-to-date value set and should be the preferred value set used in adults in Slovenia and in neighbouring countries without their own value set. | Valentina Prevolnik Rupel | Valuation | 24620 | Completed | 2021 | 2022 |
| 304-PHD | The sequential relief of child health problems: a preference path elicited by a kaizen task | In the proposed PhD project, we conducted (1) a series of simulation studies of choice analysis (2 publications); (2) developed and implemented kaizen tasks for child health valuation (1 publication; 1 under review); (3) assessed the effects of child age and problem duration (1 under review); and (4) examined heterogeneity in preferences between subgroups (1 under review). With the support of this project, Maksat Jumamyradov completed his doctoral degree in Economics from the University of South Florida, Tampa, USA. His thesis is titled, "Essays in the Econometrics of Choice Analysis with Applications in Health Economics" (see attached). | Maksat Jumamyradov | Valuation, Education and Outreach | 102150 | Completed | 2022 | 2025 |
| 316-EO | The EQ-5D-5L value set for Italy – Dissemination and Outreach | Following the successful completion of the Italian EQ-5D-5L valuation study (Finch et al. Social Science & Medicine 2022), we successfully organized and performed a workshop targeting different stakeholder groups (clinical scientific associations, patient advocacy groups, reimbursement and procurement organizations, healthcare industry), aimed at promoting the new tariff for the EQ-5D-5L in Italy and disseminating the findings of the project. The dissemination of the Italian EQ-5D-5L Valuation study findings has been complemented by the preparation and release of a video tutorial to illustrate the use of the EQ-5D-5L tariffs estimated based on preferences of a representative sample of the Italian population. | Oriana Ciani | Valuation, Education and Outreach | 17440 | Completed | 2022 | 2022 |
| 295-RA | The feasibility, acceptability and validity of the EQ-HWB for use in a hard-to-reach population of carers of children experiencing adversity. | Purpose The EuroQol Health and Wellbeing Instrument (EQ-HWB) was designed as a broad, generic measure of quality-of-life suitable for caregivers. The experimental version is now available for researchers to validate in a range of populations. We aimed to investigate the use of the short form (EQ-HWB-S) in a population of caregivers of children where families had experienced adverse life events. Methods Using quantitative surveys and qualitative interviews we investigated the general performance, feasibility, content, convergent and known-groups validity, responsiveness to change and test-retest reliability of the EQ-HWB-S items and sum-scores in this population. The baseline survey had 234 caregivers (81% women, 38% born in Australia, 59% speaking English at home, and 51% with a Bachelor’s degree or higher); the 6-months dataset 174 cases. Twelve semi-structured interviews were analysed thematically. Results There was a good spread of responses across items, except for Item 1 (mobility) where few caregivers had mobility concerns. The EQ-HWB-S showed good convergent validity with psychological distress (K6) and personal wellbeing (PWI-A) scales. EQ-HWB-S sum-scores were statistically different in all known-groups analyses, as hypothesised. Change in EQ-HWB-S sum-scores was responsive to change in with psychological distress (K6) and personal wellbeing (PWI-A) and global health (SF-12 single item) but not changes in number of adversities. Interclass correlations for the EQ-HWB-S sum-score test-retest results were considered excellent; individual item Kappa scores were moderate. The instrument was well received by interviewees, who found the questions were clear and relevant. The items were appropriate for parents, in an adversity setting, and for carers of children with additional needs. Conclusion This study demonstrated that the EQ-HWB-S showed validity, was sensitive to change, feasible and well accepted by caregivers in this population. This study is a valuable contribution to validation of the EQ-HWB-S as it features participants that can be challenging to reach, making this study a valuable contribution to building the evidence for the broad use of this instrument. | Cate Bailey | EQ-HWB | 61758 | Completed | 2021 | 2023 |
| 309-RA | Illustrating the empirical impact of applying different value sets: easy-to-read graphs and tables for stakeholders | Aim: The objective is to perform by-country comparison of 3L and 5L value sets and cross-walks for all countries where -3L and -5L value sets are available. The output is a graphical and tabular representation of the performance and discriminatory ability of the different value sets across a wide range of severity, along with a standardized set of value set properties. Methods: First, a set of properties of each value set will be collated, including modality of kernel density plots, percentage of health states with values less than 0, mean level transitions, and range of scale. Second, a weighted resampling-based method applied to empirical data with parallel self-reports of -3L and -5L health states will be used to simulate the sensitiveness of each value set to small changes in health, along a wide spectrum of severity. Discriminative ability will be assessed using F-ratios. Graphical representation will be used to illustrate the impact of applying different descriptive systems and value sets. Significance: The EuroQol group advocates for the use of the EQ-5D-5L descriptive system, but recommendations by HTA agencies lag behind. There remains significant confusion among users and industry about the implications and advantages of moving to the -5L, as well as the implications of using a -3L versus -5L value set. This work is intended to expand the scope of work and methods used to examine US value sets to understand and illustrate the implications of choosing between EQ-5D measures and value sets in other countries around the world. | Kim Rand | Valuation | 31400 | Ongoing | 2021 | 2024 |
| 289-RA | COVID-19 and EQ-5D-5L health state valuation | Background: We investigate whether and how the COVID-19 pandemic has influenced general population health state values. Changes would have important implications, as general population values are used in health resource allocation. Data: In Spring 2020, participants in a UK general population survey rated two EQ-5D-5L states, 11111 and 55555, as well as dead, using a visual analogue scale (VAS) from 100=best imaginable health to 0=worst imaginable health. Participants answered questions about their pandemic experiences, including COVID-19’s effect on their health and quality of life, and their subjective risk/worry about infection. Analysis: VAS ratings for 55555 were transformed to the full health=1, dead=0 scale. Tobit models were used to analyse VAS responses, as well as multinomial propensity score matching (MNPS) to create samples balanced according to participant characteristics. Results: Of 3,021 respondents, 2,599 were used for analysis. There were statistically significant, but complex associations between experiences of COVID-19 and VAS ratings. For example, in the MNPS analysis, greater subjective risk of infection implied higher VAS ratings for dead, yet worry about infection implied lower ratings. People whose health was affected by COVID-19 rated 55555 higher, whether the effect on health was positive or negative. Conclusion: The results complement previous findings that COVID-19 may have impacted EQ-5D-5L health state valuation, and different aspects of the pandemic have different effects. | Edward Webb | Valuation | 24950 | Completed | 2021 | 2022 |
| 310-RA | CANDOUR study: Using EQ-5D-5L to assess the impact of global use of COVID-19 vaccines on health-related quality of life | Around 20,000 participants from a diverse group of up to 16 countries (approx. 1,200 per country) have responded to two online surveys (in 2020 and 2022), in which we asked questions about sociodemographic characteristics, health status, use of health care services, perceived health-related quality of life (HRQol) using the EQ-5D-5L instrument, prior to, during, and after the COVID-19 pandemic. These unique longitudinal international database, which will be followed imminently from a third survey, gives us the opportunity to explore how the COVID-19 pandemic and its legacy as well as current mutated economic circumstances (e.g. cost of living crises, wars) may differentially impact HRQol of different populations in different socioeconomics settings and countries. | Professor Philip Clarke | Populations and Health Systems | 99518 | Ongoing | 2021 | 2023 |
| 354-RA | Content and face validity of the EQ-HWB and EQ-HWB-S in a sample of patients, members of the general public and social care users in Italy | Background: The EuroQol Group recently developed two new instruments, the EQ Health and Wellbeing (EQ-HWB) and the EQ Health and Wellbeing short version (EQ-HWB-S). The EQ-HWB and EQ-HWB- S are intended to capture a broad range of health and broader quality of life aspects, which may be relevant to general public members, patients, their families, social care users and informal carers. This study assesses the content and face validity of these two instruments. Methods:One-on-one interviews were carried out using video-conferencing interviews. A semi-structured topic guide was used to guide the interview procedures, with open-ended questions supplemented by probes, when necessary. Participants were asked to explain important aspects of their health and quality of life, to complete the questionnaires and verbalize their thoughts regarding their interpretation and ability to respond to each question. Results: Twenty participants comprising patients (n= 9), informal carers (n=6), and members of the general public (n=5) participated in the study. Face and content validity was summarized into six main themes: comprehension, interpretation, acceptability, relevance, response options and recall period. All participants found the instruments easy or quite easy to understand, and to respond to. Furthermore, the questionnaires were considered relevant for all three groups of participants, and response options were appropriate. Conclusions: The face and content validity analysis of the Italian translation of the EQ-HWB confirmed its usability to support QALY measurement in the Italian context and across different stakeholder groups. | Camilla Falivena | Descriptive Systems, EQ-HWB | 24760 | Completed | 2021 | 2022 |
| 348-PHD | The social value of avoiding poor health states in children | Aims: This PhD will contribute to our understanding of the methods used in the valuation of child health states, furthering knowledge on the issues of anchoring child preference-based measures onto the QALY scale and weighting child and adult QALY gains. The work will explore three related questions: 1. What drives people’s preferences towards valuing health gains differently when they are experienced by different age groups? 2. Do members of the public have a different relative value for quality of life compared to length of life for children of different ages, and between children and adults. If so, what are the implications for the valuation of the EQ-5D-Y? 3. Using example case studies, what is the impact of applying age weights to QALY gains on incremental cost effectiveness ratios and on the uncertainty of findings? Methods: This PhD will use both qualitative and quantitative analysis. Study 1. ** Qualitative analysis of Person Trade Off discussions ** This study will apply framework analysis to focus group data previously collected within the QUOKKA project. During the focus groups respondents will deliberate and discuss their responses to trade off questions relating to the relative value of health gains to patients of different ages. This will complement the QUOKKA projects exploration of the social value of a child relative to an adult QALY. Study 2. ** Exploring the willingness to trade length versus quality of life for children ** This study explores whether a child QALY derived from EQ-5D-Y valuation protocol can be compared to an adult QALY derived from EQ-VT protocol. It will seek to value states described by the EQ-5D-Y which are considered equivalent when experienced by different age groups. These states will be derived through focus groups, and the equivalence of the quality of life decrement from the states tested empirically based on simple ranking and sorting tasks. These health states will then be valued by a representative sample of the public using an interview and the compositive Time Trade Off component of the EQ-5D-Y international valuation protocol with variability across the age of the hypothetical person experiencing ill-health. The study will use mixed methods and seek to understand any differences in willingness to trade and consequent utility values. Study 3. ** Exploring the impact of child QALY weights on cost-effectiveness models*** Understanding the magnitude of potential differences in QALY weights on decision making will help highlight important research gaps. Study 3 will develop a number of cases studies to explore the impact of applying age weights to QALY gains within the context of decision models including discrete event simulation models and Markov cohort models. The project will include implications for threshold values and explore the impact of social value QALY weights upon estimates of opportunity cost. This PhD will be a complement to the QUOKKA study led by Prof Devlin but produces completely new outputs. | Tessa Peasgood | Valuation, Youth | 117903 | Ongoing | 2022 | 2025 |
| 317-RA | Investigating the aspects of HRQoL covered by the descriptive system and the added value of the respiratory bolt-ons (EQ-5D-5L+R): breathing problem and limitations in physical activities due to shortness of breath among patients suffering from asthma in Ethiopia: A mixed method study | Introduction: Asthma is one of the major non-communicable diseases, with its recurrence and severity of the symptoms results affecting the health-related quality of life(HRQoL) of the patient. In the EQ-5D, limitation of physical activity is somewhat captured by the usual activity and mobility item, while breathing problem is a very important aspect of physical discomfort, other aspects such as shortness of breath, coughing, and wheezing are not explicitly mentioned. This research aims to address the additional advantage of using the respiratory bolt-on(EQ-5D-5L+R) in people with asthma. Aim: To investigate how well the aspects of HRQoL are captured by the EQ-5D descriptive system and the additional advantage of using the respiratory bolt-on(EQ-5D-5L+R) in people with asthma in Ethiopia. Method: A mixed study method will be used. First, an in-depth qualitative interviews with 30 patients will be undertaken to investigate how well the health aspects important for people with asthma are captured by the EQ-5D descriptive system and the additional advantage of using the EQ-5D-5L+R questionnaire. Both EQ-5D-5L and EQ-5D-5L+R will be administered to participants. The qualitative interviews will be recorded using an audio recording device, transcribed, and translated. Findings from the interviews will be discussed in focus group discussions with participants who interviewed to make sure their concern is captured, to feed off each other’s ideas, to get useful information that individual interviews does not provide. Second, psychometric properties between EQ-5D-5L and EQ-5D-5L+R will be compared in terms of distributional effect, convergent validity, informativity, and explanatory power among 500 asthmatic patients. | Goitom Molalign | Descriptive Systems | 25720 | Ongoing | 2021 | 2025 |
| 358-RA | {(RRM + RUM) + DCE} *EQ-5D-5L = Preference | Objective: Traditionally, researchers extract latent coefficients using the conventional random utility maximization (RUM). Recently, a new model, the Random Regret Minimization (RRM) postulates that people making choices by minimizing the anticipated regret. This study aims to examine whether RUM or RRM better describes how people make decisions when faced with different levels of risks and survivals. Methods: A discrete choice experiment (DCE) was designed with 6 attributes including the 5 items of the EQ-5D-5L (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) and out-of-pocket costs as % of annual household income (5%, 10%, 20% and 50%). The Amazon MTurk, a crowdsourcing web survey platform was used to collect data in September 2022. Modified Federov algorithm was used to design 16 different choice sets. For each choice set, respondents were presented with 3 different alternatives. Each choice set was described using a short 3-month survival or a relatively long 10-year survival. One dominant test choice set was included for each respondent’s choice sets for quality screening. Separate estimations of the traditional RUM and the three different RRM models were compared to understand how people make choices subject to different risks and survivals. The three RRM models included the general uRRM model, the classic RRM (assumes µ =1) and the pure RRM (assumes µ =0). Results: Out of 500 respondents, 47.6% (238/500) passed the screening test and included in the analysis. Respondents’ mean age was 36.5 years (SD ±10.8); 58% male; 89.5% white, 4.6% black and 76.9% of them were married. Further, 91.6% of them completed college degrees and, most of them have health insurances via commercial (32.8%), Medicare (44.5%), Medicaid (13.5%) and Affordable Care Act (3.8%). Estimated coefficients of all 5 EQ-5D-5L items were significant across all models in both survival scenarios except for self-care. The out-of-pocket cost showed significance when respondents faced with 3-month survival (p<0.05), and not significant in the 10-year survival scenario. Value of µ from the µRRM were closed to zero indicating that µRRM collapses into pure-RRM and that respondents showed a strong semi-compensatory behavior while making decisions in both 3-month (µ=0.001) and 10-year survival scenarios (µ=0.019). The log-likelihood estimations were comparable across different models suggested that these models had similar fittings to the data. Conclusion: Respondents were sensitive to the out-of-pocket costs when faced with short-term survival. When survival was emphasized in choice-making scenarios, regret minimization better described choice behaviors than utility maximization. Further investigation is warranted to assess how people make health choices when subject to different risks and survivals. | Ning Yan Gu | Valuation | 26820 | Completed | 2021 | 2023 |
| 319-RA | An examination of the psychometric performance of the EQ-5D in haemophilia: A systematic literature review | Background: Haemophilia is a rare genetic bleeding disorder caused by a deficiency, or complete absence, of clotting factor VIII in haemophilia A or factor IX in haemophilia B. The impact of haemophilia upon health-related quality of life (HRQoL) is a key factor for decisions made by health technology assessment bodies. Hence, the suitability of alternative generic preference-based measures (GPBMs) is of great importance to ensure the adequacy of evidence about the HRQoL impacts of haemophilia. Objective: This systematic review examined the psychometric performance of GPBMs of HRQoL in adults with haemophilia. Methods: A systematic review was conducted to retrieve relevant studies assessing the psychometric performance of different GPBMs. After conducting searches of electronic databases, as well as a grey literature search, identified studies were screened. Data were extracted to describe the study population, approach, and psychometric performance measures. Results: In total, 4502 studies were retrieved. After screening, 200 studies were included for full text review. Having excluded non-relevant studies, a total of 52 papers (43 studies) were included. Of 43 studies, 34 examined Known-group validity, 15 examined convergent validity, and 9 assessed responsiveness. Only two studies assessed the reliability. A total of 15 studies explored multiple aspects of interest. The psychometric performance of the EQ-5D-5L/3L in people with haemophilia (PwH) was generally good, with evidence of known-group validity, convergent validity, and responsiveness found. Although limited in use, evidence supporting the construct validity of the SF-6D was found. Evidence was limited for the HUI2 and HUI3 as they were used in only one study. More, no studies using the 15D and AQoL were included. Conclusions: The review outlines the use of and psychometric performance of GPBMs. It shows where evidence is strong (validity), and where there are gaps in the evidence base around reliability and responsiveness. The results support the use of the EQ-5D and SF-6D in assessing the HRQoL impacts of haemophilia. Limited evidence exists for to other GPBMs which had very limited or no application in studies identified. | Antony Martin | Descriptive Systems | 25000 | Completed | 2021 | 2023 |
| 315-RA | The relation between the EQ-5D-5L and fatigue and cognition problems: does the EQ-5D-5L capture persistent symptoms of infectious disease? | The EQ-5D-5L might lack sensitivity for disease specific health complaints. This cross-sectional study analyzed whether fatigue and cognition problems are captured by the EQ-5D-5L in a Q-fever patient population with persistent fatigue/cognitive problems. Out of 432 Q-fever patients, 373 (86%) reported severe fatigue and 387 (90%) reported cognition problems. EQ-5D-5L utility and EQ VAS scores of Q fever patients reporting severe fatigue/cognitive problems were significantly lower compared to patients reporting less severe fatigue/cognitive problems. Fatigue and cognition problems in Q-fever patients were partially captured by the EQ-5D-5L dimensions. The addition of fatigue to the EQ-5D-5L slightly improved explained variance for the EQ VAS. This potentially also accounts for patients who experience other infectious disease sequelae that are characterised by fatigue and cognitive problems, such as COVID-19. | Juanita Haagsma | Descriptive Systems | 16080 | Completed | 2021 | 2022 |
| 355-RA | Feasibility, reliability and validity and of the EQ-5D-Y (3L&5L) in children and adolescents with ADHD | Background and purpose: Facing the lack of validity studies of self-reported preference measures of health-related quality of life, especially in mental-health conditions and social behavior disorders, the purpose is to analyze the feasibility, reliability and validity of EQ-5D-Ys (-3L and -5L) in children and adolescents with attention deficit hyperactivity disorder (ADHD). Methods: We will perform a cross-sectional design. The Spanish online versions of EQ-5D-Ys, KiDSCREEN-10, and Strengths and Difficulties Questionnaire, including the subscale of hyperactivity, will be collected using a web-based questionnaire survey in 300 youngs between 8 and 17 years old recruited by National association of ADHD. A test-retest will be performed in a subsample (n=60). The feasibility will be tested by the proportions of inadequate responses (missing responses or inconsistent) and time to complete. The reproducibility, distribution, psychometrics and Intra-Class coefficient of the EQ-5D-Ys summary score, EQ-VAS and KS-10 index will be calculated. The construct validity will be tested by: 1) comparing known groups (children/adolescents, sex, severity of hyperactivity, severity of mental health problems, family composition, the time of physical activity and the time of use screens); 2) Convergent and discriminant validity will be mainly assessed by Spearman correlation matrixes and a principal component analysis with varimax rotation to identify the comparative relevance of factors underlying the constructs of pairwise instruments. Expected implications: EuroQol Group could lead the first validation of self-reported preference measure in ADHD, increase the evidence to support the use of EQ-5D-Ys in condition-specific populations, and compare the perform of -3L and -5L. | Narcis Gusi | Youth | 24950 | Ongoing | 2021 | 2025 |
| 335-RA | An extensive pilot phase in the Egyptian EQ-5D-5L valuation study - Lessons learned | Background: In EQ-5D-5Lvaluation studies, interviewers training before and during data collection is undertaken to increase the quality of the collected data and reduce interviewer effects. Each interviewer continues to conduct pilot interviews until acceptable protocol compliance is achieved and interviewer effects are minimized as indicated by the QC tool. In some studies, only the first 5 or 10 interviews are excluded then interviewers start actual interviews. Since the pilot phase is time consuming and may increase the cost of the valuation studies, it is not clear if an extensive pilot phase can standardize the performance of the interviewers and improve the quality of the collected data. Aim: To investigate the effect of an extensive pilot phase on improving the face validity, quality of the collected data, protocol compliance, reducing interviewer effect and clustering of responses. Methods: This study will further explore the data collected in the Egyptian EQ-5D-5L valuation study, where 1303 interviews were conducted during the period between July 2019 to March 2020 by twelve interviewers. Among the collected data, 298 interviews were pilot and 1005 interviews were actual, three interviewers were excluded from the study along with the interviews they had conducted (N=113), thus leaving 216 pilot and 974 actual interviews. The study will investigate the effect of the pilot phase on improving protocol compliance, reducing the interviewers’ effect and clustering of responses. In addition, it will make use and compare the QC report indicators during the pilot phase and the actual data collection. | Samar Farid | Valuation | 14400 | Completed | 2021 | 2021 |
| 343-RA | The Psychometric Properties of the EQ-5D-5L among Ethiopian Cervical Cancer Patients: A Longitudinal Study | Background: As a measure of health-related quality of life (HRQoL), the EuroQoL five-dimensional five-level (EQ-5D-5L) has found wide applicability in various cultures and health conditions. However, there is limited evidence on the psychometric properties of the tool among cervical cancer patients in Ethiopia. Objective: To evaluate the validity, reliability, responsiveness, minimal clinically important difference (MCID), and the relationship between MCID and minimal detectable change (MDC) among patients with cervical cancer patients in Ethiopia. Methods: A longitudinal study was conducted from March 2022 to July 2023 among cervical cancer patients at two tertiary care hospitals in Ethiopia. Participants completed the EQ-5D-5L and the European Organization for Research and Therapy of Cancer (EORTC QLQ-C30) at baseline and after three months of treatment. Test re-test reliability of EQ-5D-5L dimensions was evaluated by Gwet’s AC2 while the index and EQ-VAS scores were calculated by intra-class correlation coefficients (ICC). Convergent validity with the EORTC QLQ-C30 was estimated using the Spearman correlation coefficient. Kruskal Wallis test was used to assess the tool’s ability to discriminate varied levels of patient health status among patient subgroups. Furthermore, effect size and standardized response mean were employed to assess the responsiveness over time. The anchor-based, distribution-based, and instrument-based methods were used to calculate the MCID estimates. The MCID estimates to MDC ratios were computed at the individual and group levels at a 95% CI. All statistical analysis was performed using R software. Statistical significance was determined at p < 0.05. Results: Three hundred seventy-one patients with cervical cancer had completed the survey at baseline and follow-up with a median age of 50 (41, 56) years. The majority (73%) of the patients were diagnosed at an early stage and HIV/AIDS was the most prevalent comorbidity. According to the Wilcoxon rank test, the index value and EQ-VAS scores of EQ-5D-5L improved by 0.04 and 7.0 post-treatment compared with baseline respectively. The Gwet’s AC2 ranged from 0.73 to 0.97 for EQ-5D-5L dimensions while the ICC for index value and EQ-VAS were 0.71 and 0.79, respectively indicating good test-retest reliability. The effect size ranged between -0.12 to 0.60 for the index value, indicating small to moderate responsiveness, and -0.12 to 1.16 for the EQ-VAS scores, indicating moderate to large responsiveness. Moreover, the average (range) MCID value of the EQ-5D index score was 0.10-0.15. The findings showed that only the MCID to MDC ratios at the group level were clinically meaningful than individual level. Conclusion: The EQ-5D-5L instrument was able to detect changes in health and discriminate between patients with different levels of health. While group-level MCIDs were established in this study, further studies need to be done to prove its usefulness at the individual level. | Girma Tekle Gebremariam | Descriptive Systems | 23387 | Completed | 2021 | 2023 |
| 302-EO | Introduction to Latent Classes in Health Valuation: A Workshop Proposal | Supported by the EuroQol Research Foundation, all researchers were invited to participate in an introductory workshop on choice and latent-class analysis in health valuation. Taught by Benjamin M. Craig and Suzana Karim, this free online workshop had three group sessions, two tutoring sessions, and two hands-on exercises using the R programming language and paired comparison data. Any researcher could register for any session for free. Attendees who participated in all sessions and complete both exercises will receive a EuroQol Workshop Certificate shortly. Session 1 (10 June): Applied Choice Analysis in Health Valuation The first session covered the conditional logit and heteroskedastic logit models. Dr. Craig presented the slides and led the discussion (40 minutes followed by a 10-minute break), and Ms. Karim introduced the Dutch EQ-5D-Y paired comparison data and its R code (40 minutes). After the session, attendees were invited to complete an optional hands-on exercise in R and discuss their results during a follow-up tutoring session (30 minutes), allowing for personalized feedback on how to estimate an EQ-5D value set (pits scaled). Session 2 (17 June): Latent Class Analysis in Health Valuation The second session extended the heteroskedastic logit model to its latent class counterpart, introducing grade-of-memberships, model selection, and interpretation. After the session, attendees were invited to complete a second exercise in R and discuss their results during a follow-up tutoring session (30 minutes), allowing for personalized feedback on how to estimate an EQ-5D value set (pits scaled) for each latent class. Session 3 (24 June): Applications and Advanced Topics in Health Valuation In the third session, Dr. Craig covered applications and advanced topics, including time preferences, response behaviors, scale-adjusted latent class (SALC) analyses, and random parameters. After the break, Ms. Karim briefly introduced three examples from her dissertation (Dutch BWS, Peru EQ-5D-5L, and US EQ-5D-5L). They concluded this session with a discussion on econometric extensions and survey methods in health valuation. For Whom Anyone interested in health valuation, who understands the basics of the EQ-5D descriptive system and had estimated a conditional logit. Some knowledge of R and R studio was encouraged but not required. Stable internet access was required. Outcome This introductory workshop was designed to enhance the technical capacity of early career researchers (ECRs). Gaining the capacity to estimate EQ-5D value sets using choice data also prepares ECRs for advanced topics (e.g., time preferences). | Benjamin Craig | Education and Outreach | 22540 | Completed | 2022 | 2022 |
| 349-RA | Psychometric properties of the EQ-5D in rare ataxia diseases (EQ-5D-ATAX) | Background: There is a lack of evidence about the psychometric performance of the EQ-5D-3L in patients with rare diseases. To address this gap, we assessed the acceptability, validity and responsiveness of the EQ-5D-3L in patients with rare Spinocerebellar Ataxia (SCA) and Friedreich Ataxia (FA). Methods: We analyzed data from three prospective, longitudinal observational ataxia cohort studies that recruited patients from various European and US clinical study centers. We evaluated the EQ-5D-3L in terms of acceptability, distributional properties, convergent and known-groups validity, reliability and responsiveness. Additionally, we analyzed the EQ-5D-3L's ability to capture health changes by analyzing factors influencing the patient's HRQoL progression using multivariate panel data regression models. Results: The EQ-5D-3Ls non-item response was low (<5%). Convergent validity was satisfied by comparing EQ-5D-3L/EQ-VAS with ataxia severity (SARA) and functional impairment (FARS-ADL). EQ-5D-3L discriminates well between age groups and ataxia severity, and responsiveness analyses yielded small to moderate effect sizes. Test-retest reliability indicated tolerable results. Multivariate regression analyses revealed that a more intensive progression of ataxia severity, mental health problems and obesity caused a more severe decline of patients' utility index over time, especially in male patients with an earlier disease onset. Conclusion: The analyses results satisfy acceptability, reliability, validity and responsiveness of the EQ-5D-3L in patients with rare ataxia diseases. Furthermore, the EQ-5D-3L measures HRQoL adequately, besides well-established clinical ataxia-specific instruments. Further research is needed assessing the performance of the EQ-5D-5L version in this disease area. A stronger focus on factors influencing HRQoL derived from longitudinal data analyses could help clinical evaluations and treatment. | Bernhard Michalowsky | Descriptive Systems | 24240 | Completed | 2021 | 2023 |
| 342-RA | Understanding the views of Canadians on valuing health for children and adolescents | Objectives: The international valuation protocol for the EQ-5D-Y-3L has generated a growing interest in developing the value set. However, there remain important methodological and normative issues related to whether and how to value child health. This qualitative study was aimed to understand the views of Canadian stakeholders on these important issues. Methods: Stakeholders from health technology assessment (HTA) agencies, pharmaceutical industry, healthcare providers, and academia were invited to attend online interview. Semi-structured interviews were designed to focus on: (1) comparing the EQ-5D-Y-3L versus Y-5L; (2) source of preferences for child health valuation (adults vs children); (3) perspective for framing the valuation task; and (4) methods for the valuation (discrete choice experiment [DCE] and its variants vs time trade-off [TTO]). Participants were probed to consider HTA guidelines, cognitive capacity, and potential ethical concerns. All interviews were recorded and transcribed verbatim. Framework analysis with the incidence density method was used to analyze the data. Results: 15 interviews were conducted between May and September 2022. 66.7% (n=10) of the participants had experience with economic evaluations, and 86.7% (n=13) were parents. 11 (73%) participants preferred the EQ-5D-Y-5L to the 3L. 12 (80%) participants suggested that adolescents should be directly involved in child health valuation from their own perspective. The participants were split on the ethical concerns. 8 participants (53.3%) did not think that there is ethical concern. 11 (73%) participants preferred DCE to TTO. When asked their preference between DCE with duration and DCE with death, 6 participants preferred the DCE with duration as the duration dimension was more realistic than an immediate death option. Conclusions: Most of Canadian stakeholders supported eliciting preferences of adolescents directly from their own perspective for child health valuation. DCE was considered a better method if adolescents are directly involved. | Feng Xie | Valuation, Youth | 44925 | Completed | 2021 | 2023 |
| 361-RA | Multi instrument comparison study extension: focus on EuroQol instruments, psychometric protocols, psychometric analysis and view to international replication | This study proposes to leverage and extend the QUOKKA multi instrument comparison study already funded by the Australian Government to compare a suite of paediatric generic and condition specific instruments in a sample of 4000 children and their carers with 1000 recruited through a tertiary Children’s Hospital. The QUOKKA-MIC will assess the acceptability, validity and responsiveness of measures but without a specific focus on EuroQol measures. This proposal aims to produce detailed analysis of EuroQol-specific instruments to capitalise on the extensive data generated via QUOKKA-MIC, and to collect further data targeted at addressing questions of specific strategic and scientific interest to the EuroQol Group. Three areas of research activity are proposed: THEME A: The addition of new samples of children to add more conditions, more serious conditions and conditions expected to rapidly change to the MIC. Testing of proxy versus self-report across ages 6 to 10 years. Additional psychometric testing of EuroQol measures (TANDI, EQ-5D-Y for age 2-4 years, EQ-5D adult version for use in children >12 years, EQ-HWB for carers, EQ-5D 3L, and 5L) THEME B: Analysis of psychometric performance including the development and testing of an explorative crosswalk (or mapping function) between the EQ-5D-Y-3L and EQ-5D-Y-5L. To develop an international protocol for the psychometric testing of EuroQol instruments. THEME C: To develop a rationale, approach, protocol and study team for an international application of the QUOKKA-MIC. | Kim Dalziel | Youth | 392247 | Completed | 2021 | 2023 |
| 357-RA | A comparative investigation of inequality measures for EQ-5D outcomes | Background: In a recent study we explored consistency among a set of commonly used inequality measures by applying them to index values, EQ VAS scores and level sum scores based on a large multi-country EQ-5D-3L data set. Within-outcome correlation coefficients were very high for EQ VAS and level sum data but lower for index values. The Entropy Index was particularly inconsistent when compared to the other measures when index values were used as the basis. This inconsistency was not observed when level-sum and EQ VAS values were used as the bases. Aims: In this study we propose to carry out a more in-depth analysis and investigation of the different inequality measures and corresponding outcomes. We have identified 6 key issues on which this study can potentially improve the understanding and status of EQ-5D as a basis for evaluating inequality (health-and beyond-health). Methods: We plan to revisit the Gallup dataset with a more focused/detailed investigation into 6 key issues concerning EQ-5D inequality for which this dataset is particularly well-suited. Inequality results for each country will be re-examined using ICC analyses. EQ-5D dimensions/levels will be added to the analysis. Approaches to data visualization of EQ-5D inequality for a large data set will be evaluated to identify an optimal framework. Inequality analyses will be rerun using different value sets to test for value-set effects. Learnings from these investigations will be leveraged to produce a comprehensive analysis of EQ-5D inequality for this dataset which will extended to capture inequality along some unique Gallup Indices. | Henry Bailey | Populations and Health Systems | 57200 | Ongoing | 2021 | 2024 |
| 367-RA | Population Health Primary Data Collection Project | Year 1 completed work: • Established Project Team (held 6 meetings to date), created project team terms of reference document • Established EQ-DAPHNIE Executive Committee (held 13 meetings to date) • Established advisory panel, created advisory panel terms of reference document (held 2 meetings with 2 advisors to date) • Established charter for data management/sharing, in alignment with the EuroQol Office SAVED initiative • Created authorship guidelines • Invited EQ membership to propose research questions/measures • Created sub-teams for population norms and instrument comparison research objectives • Established contract with Maths in Health (MiH) • MiH purchased and configured EQ-DAPHNIE servers • Finalized modules for pilot survey in the United Kingdom • Draft programming of pilot survey completed by MiH • A webinar was held (Dec. 7, 2021) on the research objectives, project team, methodological plan, data charter and project timelines • Interactive presentations were held during the 2022 EuroQol Academy Meeting, including breakout sessions for the population health and instrument comparison research domains Year 2 completed work: • MiH programmed the pilot survey in LimeSurvey with 6 distinct survey versions used • Conducted pilot survey in the UK using Dynata panels • Evaluated pilot data for quality • Prepared data management files for Project Team and shared pilot data • Modified survey for round 1 countries (UK, US, Canada, Australia, New Zealand) based on pilot findings • Compiled survey feedback from EQ stakeholders (EQ Office scientists, SIGs, WGs) • Conducted survey reviews with local experts • Applied for local ethics where necessary (New Zealand and Australia) • Determined target countries for round 2 (China, Spain, Brazil, France, Germany, Mexico, Argentina, Netherlands, Japan, Chile) Year 3 completed work: • Conducted survey in round 1 countries • Ethics approval sought for round 2 countries from Advarra • Completed survey translations and local expert reviews • Conducted survey in the following round 2 countries: France, Brazil, Japan o Remaining round 2 countries will be completed by the end of 2024 (Data Collection Schedule attached) • Data Access Review Team (DART) and data sharing processes established (Terms of Reference, Data Access Form, Evaluation Form, Standard Operating Procedure, and Data Transfer Agreement attached) • Protocol paper drafted and ready for publication • EQ Webinar delivered on July 9th, 2024, titled Development of the EQ-DAPHNIE Data Collection Infrastructure (slides attached) Next Steps: • Publish a Supplement (i.e., a collection) of 8-10 papers (Supplement plans attached) o Instrument Comparison Sub-team to conduct EQ-5D-5L vs. EQ-HWB comparisons o Population Norms Sub-team to determine approach for EQ instrument norms and health inequalities analyses • EQ Webinar planned for November 2024, which will provide an overview of the available data and some preliminary analyses • Carry out communication strategies within the EQ Group (e.g., promote project and availability of data on EQ website, newsletter, webinar, Academy meeting, Plenary meeting) • Apply for additional funds for Phase II o Conduct survey in round 3 countries o Consider repeat of rounds 1 and 2 | Jeff Johnson | Populations and Health Systems | 1439446 | Completed | 2021 | 2024 |
| 352-RA | Exploring the potential of using EQ-5D-3L versus EQ-5D-5L to assess the value of a national large-scale health care improvement initiative in rheumatology in Sweden | Several national quality improvement programs are under development in Sweden. In rheumatology, two person-centered care pathways have been developed. The Swedish Rheumatology Quality Register (SRQ) is closely linked to the care-pathways and data from the registry will be used to assess the consequences of the implementation. SRQ has been collecting EQ-5D-3L data since 2008 and EQ-5D has been discussed as a potential measure in the assessment of the pathways. Nevertheless, the responsiveness of 3L has been questioned and the registry is considering replacing it with EQ-5D-5L. The aims of the current study are: 1) to make recommendations regarding a replacement of EQ-5D-3L with the 5L version 2) to assess commensurability of 5L compared to 3L in this patient population and to develop a mapping function to enable comparability between newly collected 5L data and historical 3L data. Data will be collected in at least three rheumatology units in Sweden in patients with Rheumatoid Arthritis (RA) during the first year of disease (early RA) as well as in patients with established RA and Systemic Lupus Erythematosus (SLE) on one-two occasions. Cross-sectional 3L and 5L data will be compared in terms of distributional characteristics, known groups and convergent validity. Responsiveness of longitudinal 3L and 5L data will be assessed on descriptive data (inconsistencies, level moves, PCHC, index of superiority) and values (standardized response mean, standardized effect size, relative efficiency). A mapping function will be estimated, based on descriptive data and values. Findings will be validated in a separate cohort of SLE patients. | Malin Regardt | Populations and Health Systems | 70870 | Ongoing | 2021 | 2025 |
| 321-VS | A multi-country EQ-5D-Y valuation study in Asia (Resubmission of project 154-2020RA) | There is a growing interest and need for economic evaluation of paediatrics products and services in Asia. However, there is currently a lack of health-related quality of life instruments for the valuation of paediatric health outcomes in the region. EQ-5D-Y has exhibited good psychometric properties in several paediatric groups in Asia, and a valuation protocol has been developed for establishing country-specific EQ-5D-Y value sets. The PIs of the EQ-5D-5L valuation study in Malaysia, Singapore, Taiwan, and Vietnam came together to propose a multi-country EQ-5D-Y valuation study. The primary aim is to concurrently establish the EQ-5D-Y value set for the four countries using the recently published EQ-5D-Y valuation protocol. We will also collect additional data to address some of the methodological issues in EQ-5D-Y valuation. Specifically, we aim to: a) use a pilot DCE study to examine whether the child's age used in the valuation tasks will have a significant effect on valuation; b) use a larger cTTO design to explore what is the best strategy for modeling cTTO and DCE data. This project will make available four country-specific EQ-5D-Y value sets for economic evaluation of paediatric products in South-East Asia. It may also contribute to the future development of the EQ-5D-Y valuation protocol by providing new evidence from a culturally different region. We are aware of the current COVID-19 pandemic situation. We plan to start data collection in April 2022, if this project is funded. | Nan Luo | Valuation, Youth | 147810 | Ongoing | 2022 | 2024 |
| 356-PHD | Methodological improvements in health-state valuations using discrete choice experiments. | The proposed project aims to strengthen the cooperation and share knowledge between the EuroQol Group on the one hand and the Erasmus Choice Modelling Centre (in terms of methodological expertise) and the Erasmus School of Health Policy & Management (in terms of experience with the valuation of large instruments using stand-alone discrete choice experiments) on the other. As such, the proposed plan is strongly methods-oriented and aims to improve existing and introduce new methods while also focusing on making state-of-the-art discrete choice experiment methods more easily accessible. | Marcel Jonker | Valuation, EQ-HWB | 273185 | Ongoing | 2024 | 2028 |
| 313-PHD | Measuring and valuing health for children and adolescents in Ethiopia | Ethiopia is the second most populated country and one of the fastest-growing economies in Africa. Population between the ages of 10 and 19 accounts for 42 percent of Ethiopia's total population. Its recent development of HTA system recommends the use of societal preferences for valuing health states and social health insurance. Therefore, there is a rising need for research on youth health measurement and valuation in this country. The goal of this PhD project is to improve health measurement and valuation for children and adolescents in Ethiopia. Specific objectives include to assess the equivalence in measurement properties between EQ-5D-Y-3L and -5L Amharic interview-assist (IA) and proxy modes of administration, to develop a value set for the EQ-5D-Y-3L using the international valuation protocol, and to investigate the difference in EQ-5D-Y values elicited from adults and adolescents. First, a systematic literature review will be undertaken on the topic of measurement equivalence across modes of administration. Then, the psychometric performance of IA and proxy of both Y-3L and Y-5L will be tested and compared using a cross-sectional study design among young population aged 5–15 years with a known health conditions (n = 600) and a control group of 'healthy' school children (n = 300). The instruments will be administered again 10 days after the first interview using the same mode of administration to a subgroup of participants from a general school sample and those with chronic disease conditions in order to evaluate test-retest reliability and responsiveness in those who have changed health conditions. Third, the valuation study will be conducted in accordance with the international EQ-5D-Y valuation protocol. The fourth part is a methodological add on study connected to the main valuation study: DCE and TTO values for EQ-5D-Y-3L health states will also be elicited from adolescents to enable comparison of adult proxy and adolescent self perspectives, which has not been done for TTO yet. | Abraham Gebregziabiher | Valuation, Youth | 115000 | Ongoing | 2021 | 2026 |
| 330-PHD | Evaluation of the EQ-5D-Y as a child PROM in tertiary hospitals for high impact childhood conditions | Increasingly clinicians, health service providers and patients see value in the use of patient reported outcome measures (PROMs) to inform clinical practice. As a short generic health measure, validated across a wide age range and with strong psychometric properties, the EQ-5D-Y is a promising tool for routine use as a clinical PROM for children. There is a paucity of research regarding the use of PROMs in children and the use of EQ-5D-Y as a clinical PROM. This project aims to assess the clinical utility of the EQ-5D-Y as a routine PROM in managing clinical care in a tertiary paediatric children’s hospital. A knowledge to action framework will inform a four stage, mixed methods approach: Project 1. **Systematic review** of the literature to understand how generic PROMs have been used to inform clinical decisions across the lifespan. Project 2. **Determine clinical utility of the EQ-5D-Y in a paediatric tertiary hospital** Using data from the QUOKKA- Multi Instrument Comparison Study for Children which involves 1500 families recruited via tertiary hospital setting with a range of conditions selected based on their high prevalence and high impact on quality of life of children. Clinical utility of the EQ-5D-Y will be assessed through analysis of selected outpatient clinic data to show feasibility and acceptability to patients and clinicians. Clinical trust in the data will be established through validity and responsiveness compared to established clinical endpoints. Project 3. **Understand patient and clinician perspectives** via qualitative semi-structured interviews and/or focus groups to understand their preferences on the use of PROMs in the clinical setting and to collaboratively design how PROMs could be feasibly incorporated and fedback into hospital outpatient clinical practice. The co-design will include visual formatting of the PROM information and ways of scoring of the EQ-5D-Y. Project 4. **Pilot cluster randomised control trial (RCT) trialling two alternative methods of presenting the EQ-5D-Y as a PROM to clinicians and families** across a number of outpatient clinics/ clinical groups for 3 months. The two methods of incorporating and feeding back the EQ-5D-Y as a PROM for clinicians will be informed by stage 1, 2 and 3 using a codesign process. A mixed methods evaluation will be conducted to include changes in clinical practice, confidence, knowledge and outcomes. Qualitative information on the usefulness, feasibility and sustainability of the trialled methods for incorporating the EQ-5D-Y as a PROM will also be obtained. This PhD will be a complement to the QUOKKA study led by Prof Devlin but produces new outputs based on use of EQ-5D-Y as a routine measure in a clinical hospital setting. | Kim Dalziel | Youth | 124858 | Ongoing | 2022 | 2025 |
| 285-PHD | To capitalize on the clinical value of EQ-5D - communicating and predicting patient outcomes on the individual patient level | To support value-based health care, many hospitals are developing dashboards to collect patient reported outcomes (PROM), with future aspirations to use results to support decision making at the hospital and individual patient level. In the proposed PhD project, our objective is to demonstrate the value of the EQ-5D to support clinical decision making at the individual level, using data from smaller scale databases that can be realistically collected within a short time and within a health care organization. The proposed project is a combination of qualitative focus groups and interviews, survey methods and prediction modelling. Our aims are: 1. To develop validated displays for both the descriptive system as well as the VAS score that accurately and comprehensibly present EQ-5D-5L outcome data of a single patient, in that moment, over time, and present outcomes of different treatment options. In WP1, we will develop and test different display formats of the EQ-5D-5L descriptive system and VAS that will enable patients to compare their own health state at that moment with their own historical data and future health state after intervention(s). Subsequently, we will elicit patient, caregiver, health professional and population preferences for different display formats of the EQ-5D outcomes and test the impact of display format on comprehension of information that is presented in the displays. 2. To demonstrate responsiveness of the EQ-5D-5L to changes in health status and the ability of predictive models to offer reliable estimates of future EQ-5D health status on the individual level. In WP2, we will study the responsiveness of the EQ-5D to changes in functioning and health status as a result of intervention or disease progression (or improvement) on the individual level for four different case studies in osteoarthritis, juvenile idiopathic arthritis, chronic obstructive pulmonary disease and colorectal cancer. Then, we will determine the predictive power for both the descriptive system of the EQ-5D as well as the VAS using a risk based and an effect-based approach. Finally, we will determine how database size will impact reliability of predictions of future health status. 3. To demonstrate proof of concept by implementing optimal displays with the most promising predictive models for at least one case study. In WP3, we will implement findings in an existing web-based tool and test feasibility and usability in ten patients. If funded, this four year PhD project will result in one systematic literature review (Paper #1), two user centered design studies with different sample sizes and research methods (Paper #2 and #3) and a minimum of two papers on the responsiveness and predictive power of EQ-5D-5L in two different case studies (Paper #4 and #5). If the EQ-5D could prove value as an instrument for clinical decision support, this could increase the implementation potential of the EQ-5D in large scale databases as a result of patient effort directly benefitting the same patient. | Janine van Til | Descriptive Systems, Valuation, Populations and Health Systems | 185161 | Ongoing | 2021 | 2027 |
| 287-PHD | Measuring Health-Related Quality of Life in Orthopedic Clinical Practice | This PhD-project investigated the broad potential of the use of EQ-5D and other PROMs in routine clinical care application in orthopedic surgery. The use of PROMs covered both of quality enhancement endevours and empirical research into specific problems. While doing so, several methodological challenges were addressed. First, (1) we conducted a systematic review on the use of EQ-5D and other PROMs in quality improvement tools; the scope was extended to other clinical fields (1 paper accepted). Next, (2) we used Dutch Arthroplasty Registry data to study the presence, patterns and pathways of socio-economic inequalities in total hip and knee arthroplasty patients. This research illustrated the meaningful performance of EQ-5D as indicator of inequalities along other PROMs via multiple techniques (1 paper published; 1 submitted). With the same dataset, we (3) quantified the impact of the COVID-19 lockdown on EQ-5D and other PROMs, illustrating the performance of EQ-5D as public health indicator of a health disaster with national magnitude (1 paper published). (4) We compared head-to-head the EQ-5D-5L and EQ-5D-Y-5L in adolescents with scoliosis, where the hypothesis to reject was that they are incomparable (1 under review). Finally, we (5) conducted a quality of care data analysis using national Medicare (US) data on arthroplasty interventions, in the context of a scientific exchange program supervised by dr. J. Poeran (NY, US). The relative importance of hospital, patient, and socio-economic factors, and their interaction, was addressed (1 paper published). The PhD-manuscript incorporating these studies has been submitted for evaluation, and is expected to be publicly defended in the first half of 2025 at Erasmus University Rotterdam. Its title runs “Patient-Reported Outcomes in Orthopedic Surgery: Enhancing Care Quality and Reducing Socioeconomic Inequality”. Over the course of the PhD trajectory, the candidate has contributed in several ways to the scientific processes both at Erasmus MC (dpt of Orthopedic Surgery) and the EuroQol Research Foundation, both related to the topics of the project, and unrelated (the EuroQol PhD network). | Joshua Bonsel | Populations and Health Systems, Youth | 112680 | Completed | 2021 | 2024 |
| 345-PHD | Statistical methods for handling and analyzing EQ-5D-5L data in randomized clinical trials | There is a growing interest in measuring patient-reported outcomes (PROs) in clinical research. The EQ-5D-5L has been often included to supplement disease-specific PRO instruments in randomized clinical trials (RCTs). The EQ-5D-5L data, if analyzed properly, can produce important evidence for two purposes: estimating the treatment effect between arms and deriving health utilities to support economic modeling. However, the analysis and reporting of the EQ-5D-5L in RCTs is rather limited, due at least in part to the lack of methodological guidance in analyzing utility data. Among those RCTs with published EQ-5D data, there is noticeable heterogeneity in choosing statistical models for data analyses. This PhD project aims at producing empirical evidence in comparing a wide range of statistical models in estimating treatment effect using the EQ-5D-5L and deriving health utilities for economic models. Furthermore, the output from this research program can be used to develop practical guidances on analyzing the EQ-5D-5L in the RCT setting. Such guidances can potentially improve the quality of analyzing and reporting the EQ-5D-5L in this context. | Feng Xie | Others | 90000 | Ongoing | 2020 | 2025 |
| 320-VS | Resubmission of pre-approved EQ Project 20190450: Re-estimating the EQ-5D-5L value set for China | Objectives: The original EQ-5D-5L value set for China suffered from several limitations, including lack of sample representativeness, use of EQ-VT protocol V1.0 without a formal quality control procedure, without using the discrete choice experiment (DCE) data. This study aimed to re-estimate the EQ-5D-5L value set for China by addressing the abovementioned issues. Methods: In this study, following EuroQol Group protocols and approved by Guizhou Medical University, the researchers employed a robust experimental design with 240 choice sets for Discrete Choice Experiment (DCE) and 86 EQ-5D-5L health states for time trade-off (cTTO). Quota sampling ensured representation of the Chinese population across gender, age, education, and residence. Twelve provinces were chosen, aiming for 100 participants each. The interviewers, trained and quality-controlled for cTTO data collection, used both snowball and purposive sampling. Data collection via EQ-VT involved face-to-face interviews covering cTTO and DCE tasks. The analysis considered various model specifications, evaluating 48 models based on face validity, prediction performance (root mean squared error, mean absolute error, Lin’s concordance coefficient), and parsimony. The out-of-sample prediction method was used to evaluate model accuracy by leaving one of 10 blocks of health states out each time. Results: In this study conducted between July and September 2023, involving 1,206 participants from 15 regions in China. The researchers examined the demographic characteristics of their sample in comparison to the 7th National Population Census. The participants spent an average of 41.60 minutes completing interviews, with 28.09 minutes for the cTTO valuation task and 7.71 minutes for the DCE task. The quality of the cTTO data was generally good, with low protocol violation rates among interviewers. Approximately 22.99% of observations had negative values, and the cTTO values were effectively distributed, showing clustering at the lowest/highest values. We employed hybrid models combining cTTO and DCE data for value set modeling, with the CALE model selected based on its slightly better prediction performance and greater parsimony. The resulting value set, exhibited changes in the rank order of dimensions and a widened value range, emphasizing the significance of this updated EQ-5D-5L value set for China. Conclusion: This study estimated an updated EQ-5D-5L value set based on the preferences of a more representative general population sample in China, using both cTTO and DCE methods. The value set shows remarkable differences with the original value set estimated 11 years ago, which may reflect the evolving health preferences of the Chinese population. | Nan Luo | Valuation | 147810 | Completed | 2021 | 2023 |
| 329-RA | EQ VAS: What does it measure? A structured analysis of the EQ VAS in national population surveys (the Health Survey of England) | The main aim of this project was to propose appropriate conceptual models for the measure EQ VAS. To achieve these aims, we 1) gathered and summarized existing knowledge on conceptual frameworks for the measure EQ VAS; and b) empirically tested these models by investigating the principal factors associated with variation of EQ VAS in secondary data. The principal objective of this project is strategic in that we hope to encourage the development of a more broadly-based program of work centered on EQ VAS. Methods Part 1: To understand existing knowledge, theoretical or empirical, regarding the conceptual model framing the EQ VAS measure, we conducted a systematic review which included an electronic review of published data and reviewing the grey literature. The electronic review systematically searched publications from PubMed/Medline with pre-determined inclusion and exclusion criteria. Abstracts and full text were considered for inclusion and then reviewed by coinvestigators YSF and LCH. Appropriate grey literature as well as papers missed by keyword search were identified by interviewing key members of the EuroQol group as well as reviewing EuroQol conference proceedings. Part 2: Because we could not identify appropriate conceptual model(s) for the EQ VAS from Part 1, we used Jylha’s measurement model for self-rated health and Wilson and Cleary’s model for HRQoL to frame the empirical analysis of Part 2. Empirical data analysis was conducted using the Health Survey for England (HSE: annual survey randomly sampling private households in England) 2017 and 2018. All respondents ≥18 years who completed the EQ VAS were eligible for analyses. Ordinary least squares regressions and partial least squares structure equation modelling (PLS-SEM) were used to investigate how a large set of variables related to the EQ VAS. Relevant predictor variables were classified into blocks: physiological indicators, medication use, functional limitations, presence of illness, symptoms (2017 data only), health behaviors and socio-economic/demographic factors. Regressions were assessed for each block to understand the predictive value of the items within the blocks. Items were excluded from the models if p-values were >0.1. Items with p-values between 0.1 and 0.05 were assessed for further inclusion in models using the F-test. Then, sociodemographic and socioeconomic items were added to each of the first five blocks using stepwise forward inclusion. Results: Part 1: We found appropriate framework for using the EQ VAS for valuing hypothetical health states rather than an overall measure of one’s own health. The specific layout of the EQ VAS reflects its valuation origin, such as drawing a line (the previous version), vertical orientation, and choice of end labels. None of these design elements were selected for the purpose of measuring self-reported overall health. The issue around end labels is particularly a concern. Part 2: More than 7000 respondents ≥18 years old completed the EQ VAS data in each year of the HSE. The EQ-5D-5L items accounted for the largest percent of variance in the EQ VAS (r-squared= 0.47, 0.48). Excluding pain, limitations in function due to specific health conditions was the next strongest explanatory block (r-squared=0.32) followed by presence of illnesses (r-squared= 0.22) and health behaviors (r-squared=0.15). Medication use, sociodemographic/- economic and physiological indicator blocks explained ≤10% of the variation in the EQ VAS. Within blocks, specific variables related to vision, skin and digestive problems were consistently not important in regression models whereas the largest decrements in EQ VAS were found for variables related to mobility/musculoskeletal conditions, nervous system conditions, and infectious diseases. Adding SES to the health behavior, functional limitation and presence of illness blocks yielded marginal improvement to explained variance of EQ VAS. The data demonstrated good fit to the Wilson & Cleary model using SEM: proximal concepts along the main pathway were shown to explain more variance in EQ-VAS and SRH than distal concepts and those not along the main pathway. To a less extend some level of evidence supported the Jylhä model too. However, we did not have the necessary measures in the HSE to find strong support for this model. Conclusions: There is a dearth of literature addressing the conceptual framework of EQ VAS as a measure of self-rated overall health. Despite this limitation, the measure remained a component of the EQ-5D instrument across all versions, demonstrating it is adding value that both the EQ-5D developers and end users continue to exploit. Although we initially were guided by Jylhä’s conceptual model to inform the analysis of EQ VAS, the results more closely resembled Wilson & Cleary’s causal model of health-related quality of life. To our knowledge, our study was the first empirical application of theoretical models of self-rated health and HRQoL to the EQ VAS. Consistency was found between models for EQ VAS and a single item SRH, although most models were stronger for SRH. | You-Shan Feng | Descriptive Systems, Populations and Health Systems | 55230 | Completed | 2021 | 2022 |
| 351-RA | Behind the scenes: a mixed method investigation of the impact of quality control procedures on interviewers performance | Background. The EuroQol Valuation Technology (EQ-VT) protocol is currently employed by valuation studies of the EQ family of instruments worldwide. To date, all the evidence in support of the quality control (QC) originates from quantitative indicators. This study aims to explore qualitative aspects and indicators of interviewers’ performance in EQ-VT interviews. Methods. We transcribed and independently coded 24 video-recorded interviews from the Italian EQ-5D-5L valuation study by adopting the conversational analysis framework to identify positive and negative ‘patterns’ of conversational practice. These were categorized into themes and subthemes and used to score a random sample of 42 video-recorded interviews conducted at different time points by seven interviewers. Results. The conversational analysis identified 20 positive and 14 negative interview patterns that were grouped into two main themes (i.e., task execution and communication skills). Positive items included appending questions that stimulated responders’ engagement, providing different explanations for unclear aspects, supporting the participant with useful information for completing the tasks, and increasing the interview’s coherence by confirming the respondents’ answers. Negative patterns included moving forward in the exercise without making sure that the responder had understood, trying to force an answer from the responder, speaking too fast, and providing incomplete or incorrect explanations of the task. Most interviewers exhibited a moderate increase in positive patterns or a decrease in negative ones. Conclusions. The identified patterns may be useful to inform the training material of EQ-VT studies across the world and complement the existing QC process. | Michela Meregaglia | Valuation | 38140 | Completed | 2021 | 2022 |
| 337-RA | Measurement properties of the EQ-5D in diseases of the upper respiratory tract: a systematic review | Purpose This study aimed to conduct a systematic review of the published evidence regarding the psychometric properties of the EQ-5D (EQ-5D-3L and EQ-5D-5L) in patients with upper respiratory tract diseases, encompassing conditions associated with the nose, pharynx, and larynx. Methods A comprehensive literature search was carried out utilizing the MEDLINE, EMBASE, and EuroQol websites (up to November 14, 2023). Full-text English articles focusing on original research concerning the psychometric properties of the EQ-5D, including construct validity, test-retest reliability, or responsiveness, were included. Studies involving experimental versions of the EQ-5D were excluded. The quality assessment utilized the COSMIN Risk of Bias checklist, and data synthesis followed the COSMIN methodology. Results A total of 20 studies, published across 21 publications (20 to 17,780 patients), were included, with the majority focusing on chronic rhinosinusitis and allergic rhinitis. Sufficient construct validity for both EQ VAS, and the EQ-5D Index was supported by high certainty. In the case of chronic rhinosinusitis and allergic rhinitis, tests in line with the hypotheses constituted 100% and 92%, respectively. Evidence regarding responsiveness was limited to EQ VAS, had moderate quality, and indicated sufficient quality of the scale. There was no available data for test-retest reliability. Conclusion This systematic review provides an overview of the psychometric properties of the EQ-5D as an HRQoL measure in upper respiratory tract diseases. The available evidence suggests that both EQ-5D-3L and EQ-5D-5L have sufficient convergent validity, and may be used to assess HRQoL especially in chronic rhinosinusitis and allergic rhinitis. | Dominik Golicki | Descriptive Systems | 29865 | Completed | 2021 | 2024 |
| 326-RA | A feasibility study of applying PAPRIKA to the EQ-HWB | Objective: The nine-dimension EQ Health and Wellbeing Short (EQ-HWB-S) has been valued using time trade-off and discrete choice experiments (DCE) using EQ Portable Valuation Technology (EQ-PVT). One novel approach to minimise attribute non-attendance is an adaptive DCE using the Potentially All Pairwise RanKings of all Possible Alternatives (PAPRIKA) method. PAPRIKA constrains the DCE’s pairwise choices to two dimensions at a time, presented adaptively to each participant. A separate binary search identifies the location of 'dead' resulting in personal and societal value sets. The aim was to test PAPRIKA’s feasibility for valuing the EQ-HWB-S. Method: Applying PAPRIKA to EQ-HWB-S would result in a DCE with up to 70 pairwise choices. To minimise burden, two DCEs were run based on splitting EQ-HWB-S’s dimensions into two groups of four with one common linking dimension, pain, which was selected for its salience and the expectation that it would have a similar relative importance in each DCE. A second binary search survey used the combined results from the DCEs. Participants completed one DCE and the binary search survey. After pilot-testing using “think-aloud” interviews, the surveys were administered to a representative UK general population sample. Data exclusion criteria included inconsistency in at least one repeated pairwise choice and speeding. The time taken for each DCE, the extent of inconsistency, the number of pairwise choices and participants’ feedback are assessed. Participants’ rankings and utility weights are compared to EQ-PVT results. Results: Of the 1230 DCE participants, 546 were included with 349/546 (64%) completing the binary search survey, resulting in 344 participants with utility weights. These participants tended to be older and more likely to be female or to report general health problems. The median time per trade-off tasks was 14 and 12 seconds for the two DCEs and the median time to complete the two DCE surveys for those who were included was 9 minutes 42 seconds and 8 minutes 56 seconds respectively. The median number of trade-offs was 22 (range 10-32) and 24 (range 11-35) respectively. The median time taken to complete the binary search survey was 3 minutes and 13 seconds. The majority of DCE participants (>70%) agreed that the DCEs were easy to understand and reflected their preferences in terms of dimension rankings, were confident in their answers and did not get bored or tired completing the survey. Pain was most commonly ranked as first and activity, mobility and sadness/depression were second, mirroring the EQ-PVT ranking. The worst state had a value of −0.51 compared to −0.384 for EQ-PVT. The mean difference between dimension weights from PAPRIKA and EQ-PVT was 0.005 but differences varied by dimension, e.g. PAPRIKA gave less weight to mobility and more to cognition. Levels 2 and 3 had small weights for PAPRIKA and EQ-PVT. Discussion and conclusion: PAPRIKA was successfully used to value EQ-HWB-S and is feasible based on participants’ feedback and results which are similar to EQ-PVT. Compared to EQ-PVT, PAPRIKA resulted in larger weights for some dimensions such as cognition which may reflect a reduction in attribute non-attendance. Like other PAPRIKA studies, a large proportion of participants were excluded to ensure data quality. Furthermore, participants saw only half of the dimensions in each DCE which assumes preferences are not affected by present/absent dimensions. | Clara Mukuria | Valuation, EQ-HWB | 52460 | Completed | 2021 | 2023 |
| 339-RA | Systematic Review of Measurement Properties of the EQ-5D in Hematologic Cancers | **Aims:** To perform a systematic review on EQ-5D (EQ-5D-3L or EQ-5D-5L) psychometric properties in hematologic cancer patients. **Methods:** The review protocol will be registered in the PROSPERO database, before the start of a systematic search. The review will follow the PRISMA guidance on systematic reviews and meta-analyses. The following electronic databases will be searched: MEDLINE (PubMed), EMBASE (Elsevier) and EuroQol Group publication database. Additional references will be obtained from reviewed articles. Two authors will independently screen the titles and abstracts of studies resulting from the searches and then – full texts of selected articles. The quality of included studies will be assessed according to COSMIN guidelines. Data from studies meeting the inclusion criteria will be extracted using a pre-determined extraction form. Measurement properties will be summarised based on the type of property assessed (feasibility, distributional properties, content validity, construct validity, test-retest reliability, responsiveness). We will try to explain the heterogeneity in results between studies. Results will be presented in a narrative and tabular form. In the case of a sufficient number of studies and their homogeneity, results will be pooled. Clinical indications with sufficient data on EQ-5D psychometric properties and those which should be studied in the future will be indicated. | Dominik Golicki | Descriptive Systems | 34390 | Ongoing | 2021 | 2025 |
| 322-RA | Investigating the development of a multi layered “Deep Dive” measure of health-related quality of life based on the EQ-5D: A pilot study | There have been discussions within the DSWG and elsewhere about the potential to develop an instrument based on the EQ-5D that combines the benefits of both preference based and profile measures. This can be defined as a multi layered ‘Deep Dive’ approach to measuring health and quality of life and includes a higher-level preference-based measure (i.e. EQ-5D descriptive system) (Layer 1), and a set of items associated with each dimension included in the preference measure (Layer 2). This would generate a system including both a preference-based values and profile scoring, enhancing EQ-5D measurement properties without affecting the descriptive system. The aim of this pilot study is to investigate the potential development of a multi layered ‘Deep Dive’ instrument based on the EQ-5D. The results will inform a larger research programme to develop a Deep Dive instrument led by the DSWG. The study includes two stages. The first stage will examine the conceptual basis for such an instrument, and will consider theoretical, conceptual and methodological issues, and the benefits and limitations. Stage one will result in documents for consultation, and to facilitate the early involvement of the membership in future initiatives. The second stage will test the feasibility of developing a Deep Dive. This will be done by applying psychometric methods to existing datasets to investigate the association between the EQ-5D dimensions and overlapping items from other measures. This tests the feasibility of increasing the amount of information provided by the dimensions included in the EQ-5D descriptive system. | Brendan Mulhern | Descriptive Systems | 40280 | Ongoing | 2021 | 2024 |
| 318-RA | Measurement properties of the EQ-5D-5L among non-small cell lung cancer patients on active treatments in China | Background: Target treatments and immune checkpoint inhibitors have changed the therapeutic landscape for non-small cell lung cancer (NSCLC) treatment in recent years. These new treatments extend patients’ overall survival and with less adverse effect compared with chemotherapies. Interests in conducting cost-effectiveness between NSCLC treatments requires HRQL collected from this population. However, there is limited information on the performance of the EQ-5D-5L for NSCLC in China. Aim: To test the measurement properties of the EQ-5D-5L in measuring HRQL of NSCLC patients on active treatments in China. Methods: This study will piggy-back on a health survey that will interview 800 NSCLC patients on active treatments from 16 hospitals across 7 provinces/cities in China in 2021. Patients will be recruited using a quota sampling frame based on: 1) the distribution of NSCLC incidence rates (age and sex) in China, age and sex distribution of the general population, and the distribution of NSCLC treatments. Both EQ-5D-5L and EORTC QLQ-C30 will be administered. Demographic and disease- and treatment-related information will also be collected. To investigate the measurement performance of the EQ-5D-5L, we will examine: 1) response patterns using ceiling and floor effects and distribution across severity levels of each dimension; 2) convergent construct validity using Spearman’s correlation against the QLQ-C30; 3) known-group validity by type of treatment, cancer stage, and QLQ-C30 domain scores; and 4) informativity and discriminatory power using the Shannon and Shannon evenness indices. | Xuejing Jin | Descriptive Systems, Populations and Health Systems | 39040 | Ongoing | 2021 | 2024 |
| 274-RA | Testing the psychometric properties of two respiratory bolt-ons | Background: Two recently developed respiratory bolt-ons were shown to improve the construct validity of EQ-5D-5L among community-treated patients with obstructive airway disease (OAD). We evaluated their psychometric properties, including responsiveness and reliability in a specialist-managed OAD cohort. Methods: We performed in-depth interviews with ten OAD patients and ten clinicians to assess their content validity. We administered the Saint George’s Respiratory Questionnaire (SGRQ), EQ-5D-5L (S) and two respiratory bolt-on items, (physical impediment, R1 & symptoms, R2) in adult OAD patients at baseline and follow-up visits. We used the baseline data to compare among four EQ-5D versions, S, S+R1, S+R2 & S+R1R2: (1) ceiling using individual item responses; and (2) Spearman’s rho correlations (Rs) with SGRQ, (3) association with clinical characteristics using C-statistics from receiver operating characteristic (ROC) analyses, and (4) coefficient of determination from regression modelling using index/level sum scores. We used the follow-up data to compare intra-class correlation coefficients (ICCs)/Cohen’s Kappas (κ) of “stable” patients; and standardized effect sizes/Cstatistics of “better” patients using SGRQ and clinical criteria, across the four versions. Results: Psychometric properties of the respiratory bolt-ons proved to be acceptable. We included 184 patients with a mean age of 54 (standard deviation,18) years at baseline, and 120 at follow-up at 2.8 (standard deviation, 1.7) months. The ceilings were nullified in S+R1, S+R2 and S+R1R2. Construct validity and responsiveness were consistently higher in S+R2 and S+R1R2 compared to S, while reliability remained comparable among the four versions. Conclusions: Respiratory bolt-ons demonstrated good content validity and enhanced the psychometric properties of EQ-5D-5L in OAD. | Nan Luo | Descriptive Systems | 24790 | Completed | 2021 | 2023 |
| 243-RA | The relationship between the EQ-5D-5L “anxiety/depression” dimension and anxiety and depression symptoms | Background and aims: The EQ-5D-5L “anxiety/depression” (A/D) dimension is a composite dimension. The forced single response relies on the respondent's ability to endorse a response option when the levels of the anxiety and depression problems, taken apart, may differ. The aims of this study were to investigate the relationship between the composite A/D dimension, separate anxiety (here referred to as “A dimension”) and depression (here referred to as “D dimension”) dimensions and anxiety and depression symptoms as measured with the Generalized Anxiety Disorder–7 (GAD-7) and Patient Health Questionnaire–9 (PHQ-9) respectively. Methods: This study is a secondary data-analysis of data from the POPCORN study. The data were collected using a web-based survey among general population samples from nine countries. The primary outcome measures of our study were the EQ-5D-5L A/D, A and D dimension level scores (5L) and the PHQ-9 and GAD-7 (sum)score. In part 1 of the analysis, we examined the frequency of reported problems on the composite A/D dimension and A and D dimensions. We used Spearman rank correlation coefficients to examine the strength of association between the A/D dimension and the A and D dimension and the GAD-7 and the PHQ-9 score. In part 2 of the study, we calculated the performance of the A/D dimension using the Area Under the Receiver Operating Characteristic curve (AUROC) and compared to having anxiety (GAD-7≥8), depression (PHQ-9≥10) and both versus none for the total population and sub-groups. Results: Of the 23,622 respondents, 48.7% reported problems on the standard A/D dimension, versus 46.4% on the A dimension and 34.8% on the D dimension if presented separately. A total of 15.7% gave non-consistent answers on the A/D dimension versus the separate A and D dimensions. Spearman rank correlation coefficients of the A/D dimension and A and D dimensions were 0.712 and 0.657, respectively. The performance of the A/D dimension in the total sample was good (AUROC>0.8) and did not differ significantly between diagnostic groups. The performance differed significantly between the age groups, with worse performance in the younger groups, and differed between those with a singular chronic condition, with worse performance in those indicating having an anxiety or depression disorder. The performance did not differ significantly by gender, education, nor total chronic conditions. Conclusions: The combined EQ-5D-5L A/D response is consistent with A and D dimension if presented separately. Convergent validity between the AD, A and D dimension and the GAD-7 and the PHQ-9 score was high. The A/D dimension captures symptoms of anxiety, depression or both equally well. Performance is worse in the younger population. | Juanita Haagsma | Descriptive Systems | 19560 | Completed | 2021 | 2024 |
| 227-RA | Comparison of the Afaan-Oromo language version of the EQ-5D-Y-3L and the EQ-5D-Y-5L performance among children and adolescents in Ethiopia | Introduction: EQ-5D-Y is one of the commonly used generic health-related quality of life (HRQoL) measures. As has been done before, cultural adaptation and testing the psychometric properties of the instruments have crucial implications for measuring health-related quality of life (HRQoL) outcomes, resource allocation, and the planning of healthcare interventions in child and youth populations in Ethiopia. This study aimed to assess and compare the measurement properties of the EQ-5D-Y-3L and EQ-5D-Y-5L among school children and adolescents, as well as those with a range of health conditions. Methods: A cross-sectional study was conducted to collect data among children and adolescents aged 8-15 years. Data were collected from mainstream schools and government hospitals in Addis Ababa. All the participants self-completed the EQ-5D-Y-3L, EQ-5D-Y-5L, and the self-rated health question. Both instruments were compared for their feasibility, ceiling effect, redistribution, informativity, test-retest reliability, and known groups’ validity. Cohen’s Kappa agreement and ICC were used to assess the test-retest reliability and ANOVA with post hoc Tukey test was used to confirm the known-group validity of the instruments by comparing groups with prior expected differences. Data was analyzed using IBM SPSS statistics 26, where a p-value of <0.05 was considered significant. Results: A total of 473 children and adolescents (comprising those with diagnoses of CHF, asthma, acute leukemia, and also school children and adolescents) with a mean (SD) age of 14.62 (1.89) years completed both instruments. There were a few missing values of 3.8% for Y-3L and 4.2% for Y-5L, suggesting comparable feasibility. The ceiling effect was reduced from 52% for Y-3L to 45.8% for Y-5L (by 12.0% in general). The proportion of inconsistencies was relatively low (4.4%-7.0%) across dimensions moving from Y-3L to Y-5L, and redistribution was cross-checked for all 35 3L-5L-level combinations. Regarding informativity, the Y-5L demonstrated more discriminatory power, indicated by having a higher Shannon diversity index in all domains of the Y-5L compared with the Y-3L. Both Y-3L and Y-5L showed moderate to substantial agreement on test-retest reliability across dimensions, EQ-VAS, and LSS scores. The known-group validity was confirmed for both the EQ-5D-Y-3L and EQ-5D-Y-5L i.e., both instruments seemed to do well at detecting differences between healthy (school) children/adolescents and patients with disease conditions (p<0.05). Conclusion: The Afaan-Oromo language version of the Y-5L appears to improve the measurement properties; reducing the ceiling effect, improving discriminatory power, and achieving higher test-retest reliability agreement compared to the Y-3L. Both instruments had similar feasibility and confirmed known-group validity. | Goitom Molalign | Youth | 22080 | Completed | 2021 | 2024 |
| 282-RA | Randomised equivalence study to compare online interviews versus face-to-face interviews to value the EQ-5D-5L using cTTO: Australian arm | Introduction: Valuation studies using composite time trade-off (cTTO) interviews have historically been conducted face-to-face. The COVID-19 pandemic forced a number of valuation studies to conduct their interviews online via videoconference. These studies reported that online interviews appeared feasible and acceptable; however, participants were not randomly allocated and there was no reporting of cTTO value equivalence. This study builds on its sister study from the UK and aims to assess the acceptability and equivalence of in person face-to-face interviews with online videoconferencing interviews on cTTO valuation outcomes and explore the impact of interview mode on attendance and on data quality. Methods: Participants were recruited via an external market research company from Greater Melbourne and Regional Victoria. A multi-stage stratified sampling approach was used, with quotas based on Australian Bureau of Statistics (ABS) data for age, gender, geographical location, education level and income. Consenting participants were randomly allocated to complete a cTTO interview face-to-face or online with 1 of 4 trained interviewers. Participants who refused the interview after randomisation were contacted to offer reasons. Participants completed cTTO tasks for the same 10 EQ-5D-5L health states using EQ-VTv2 software. Mean and SD cTTO value overall and for each health state, participant understanding, data quality, demographic characteristics, participant preference, participant engagement and participant feedback were all compared across interview mode. Statistical equivalence for cTTO values for each state was tested using two one-sided t-tests by mode. Finally, regression analysis was completed to assess the impacts of interview mode on cTTO value while controlling for demographic characteristics of the participants. Results: Mean cTTO values were shown to be equivalent for mild health states and showed no significant difference for serious health states. Regressions analysis showed that mode of interview did not have any significant impact on mean cTTO values (p=.817). The proportion of individuals who did not accept their interview in the face-to face group (21.6%) was significantly larger than the proportion in the online group (1.8%) (p<0.0001). No between group difference in demographic characteristics was found. No significant difference was found between groups for participant engagement, understanding or feedback. No significant difference was found between groups for any indicators of data quality. Overall, 151 (37.4%) participants reported that they would have chosen to be interviewed online if given the choice, 51 (12.7%) would have preferred to be interviewed face-to-face and 201 (49.9%) did not mind. Discussion: The results from this study indicate that cTTO values obtained from face-to-face and online interviews are statistically significantly equivalent for mild health states. Regression analysis found no statistically significant association between health state value and mode when all the ten health states were combined. The data generated by both interview modes was of high quality and showed no significant difference. The majority of participants had no preference for interview mode however a larger proportion of participants preferred to be interviewed online rather than face-to-face, this preference was supported by the larger proportion of participants who did not accept their interview when randomised to face-to-face. Both online and face-to-face interviews appear to be equivalent and acceptable for conducting cTTO interviews. | Tessa Peasgood | Valuation | 182848 | Completed | 2021 | 2022 |
| 198-RA | Going beyond life expectancy– Examining health inequalities in quality adjusted life expectancy (QALE) in Australia | We undertook a study to examine the potential health inequality using quality-adjusted life expectancy (QALE) as an index for future public health policy formulation. Via surveying over 2000 participants, it was found that the gap in QALE is wider than that in life expectancy when comparing the major cities with the remote/very remote areas in Australia. There appeared some intersectional differences in utility values, life expectancy and QALE. | Lan Gao | Populations and Health Systems | 24640 | Completed | 2021 | 2022 |
| 245-RA | The search for a task to measure time preference in EQ-5D valuation: systematic review, experiment and application to stand-alone DCE | Background: There is ample evidence that time preference, i.e. the importance individuals assign to health now and in the future, can influence EQ-5D valuation, for EQ-VT and the upcoming stand-alone DCE protocol. There is, however, no consensus on how time preference could and should be measured in valuation of EQ-5D, with different solutions suggested for EQ-VT and stand-alone DCE. Aim: This project, split into three parts, aims to answer the following research questions: 1) Which methods for measuring time preference exist and how do they differ? 2) Which methods appear promising for use in valuation of EQ-5D? 3) What is the internal consistency, level of difficulty, and time needed for completion for promising methods for measuring time preference? 4) Can a promising method for measuring time preferences at an individual level be included into stand-alone DCE valuation? Methods: Part 1 of this project involves a systematic review of methods for measuring time preference developed in various disciplines. Evidence synthesis will involve categorising methods by: e.g. i) the parametric assumptions made, ii) the amount of questions required, iii) difficulty for respondents, iv) evidence about internal consistency and v) applicability to EQ-5D. From this review, a selection of promising methods for measuring time preference will be obtained. In Part 2, the feasibility and reliability of these methods is determined in an experiment with a general public sample. After a go/no go decision based on the results of part 2, we apply one of these methods in stand-alone DCE valuation of EQ-5D. | Stefan A. Lipman | Valuation | 134400 | Ongoing | 2021 | 2025 |
| 235-RA | Do EQ-5D valuations differ in palliative care settings? A discrete choice experiment | This study investigated whether EQ-5D-5L health state valuations differ when framed within a palliative care needs context through a large-scale discrete choice experiment (DCE) conducted across Australia (n=2,082), Ireland (n=1,280), and the UK (n=2,009). The research examined how factors like limited life expectancy and available support levels influence how people value different health states. This work contributes important empirical evidence to the ongoing debate about the appropriateness of using standard value sets in palliative care decision-making and highlights the need for more nuanced approaches to health state valuation in end-of-life contexts. | Irina Kinchin | Valuation | 47600 | Completed | 2021 | 2024 |
| 20210010 | Translating EQ-5D into Hausa and validating the new version in hip replacement. | BACKGROUND: The EQ-5D-5L is a questionnaire used for the measurement and economic valuation of a wide range of health conditions, which necessitates its existence and adaptation in different languages. Currently, the tool does exist in Hausa language but there is no psychometric validation of the Hausa version of the questionnaire. This study aimed to cross-culturally adapt, and determine the reliability and validity of the Hausa version of the EQ-5D-5L questionnaire. OBJECTIVE: This study was aimed to determine the psychometric properties of EQ-5D-5L Hausa version in patients with hip replacement in National Orthopaedic Hospital Dala, Kano Nigeria. METHOD: This is a cross-sectional study aimed at determining the psychometric properties of EQ-5D-5L Hausa versions in patients with Hip replacement in national Othopaedic Hospital Dala, Kano Nigeria. For this study, 79 participants were found to complete the questionnaires; they comprised both male and female patients receiving treatment both the in and out patients department of National Orthopaedics Hospital Dala, Kano, Kano State, Northwest Nigeria. Only participants who meet the inclusion criteria were considered for the study. RESULT: The mean age of the respondents was 55.86 ± 18.447 years. The internal consistency was found to be 0.9 chronbach’s alpha. The test retest reliability of the EQ-5D Hausa was significantly correlated. The factor analysis yielded one factor. CONCLUSION: The EQ-5D-Hausa was successfully translated into Hausa language and is a valid tool for the measurement of health status among Hausa speaking populations. | Abdulhamid Musa | Others | 1898 | Completed | 2021 | 2022 |
| 236-RA | Does priority setting when deciding between adults and children correspond to valuation of EQ-5D(-Y)? | Background: The EQ-5D-Y instrument is increasingly used to value health states in children aged 8-15. However, there are still several methodological issues surrounding this instrument, which raised doubt about its validity. An important concern is that adults are willing to trade off substantially less time in the TTO task for children than for themselves, resulting in higher utilities for the same health states in children than in adults. It is not clear if this reflects that impaired health states are indeed giving more utility in children than in adults, or that it is an artefact of other factors. Aim: This project aims to test if priority setting decisions in healthcare allocation tasks between adults and children correspond to the TTO utilities generated by the EQ-5D and EQ-5D-Y, respectively, when accounting for equity weights. We also aim to test if and how this correspondence change when replying TTO utilities by VAS weights. Methods: We elicit VAS scores and TTO utilities for a wide spectrum of health states in a controlled, computerized, lab experiment. In a person trade-off task, the subjects have to choose between allocating a scarce healthcare budget to a group of children and a group of people of their own age. By changing the amount of people in each group, we can determine the relative weight given to these two groups. We then test the ability of the generated VAS and TTO utilities to predict these weights, while controlling for equity preferences by separate questions. | Arthur Attema | Valuation, Youth | 39360 | Completed | 2021 | 2021 |
| 232-RA | Measurement properties of EQ-5D-Y and other commonly used generic preference-based measures for children and adolescents: a systematic review | Background & study aim Preference-weighted measures (PWMs) of health status/health-related quality of life play an essential role in estimating Quality-adjusted life-years (QALY) for use in economic evaluations of health care products and interventions. However, as PWMs are first and foremost intended to accurately reflect respondent health status, ideally, they should demonstrate good psychometric properties for the population in question. This study aimed to systematically review published evidence on the measurement properties of commonly used PWMs for children and adolescents. Methods Three electronic databases (PubMed, Medline, and PsycINFO) were searched for articles assessing the psychometric properties (content validity, construct validity (including convergent validity and known-group validity), test-retest reliability, and responsiveness) of the PWMs of interest (AQoL-6d, CHU9D, HUI2, HUI3, and EQ-5DY). The COsensus-based Standards for the selection of health Measurement INstruments methodology (COSMIN) guidelines were used to assess a) the methodological quality of the studies included and b) the psychometric performance of the instruments covered. Data were analysed overall as well as by population (country and disease group) and perspective (self-report or proxy-report). This study protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO) database (CRD42021277296). Results In total, 42 articles were included in this systematic review. HUI was tested only in patient populations, CHU9D was tested mostly in general population samples, while EQ-5D-Y was tested in both populations. Overall, there was high-quality evidence supporting sufficient construct validity for all instruments except AQoL-6D. Evidence for supporting test-retest and responsiveness was of low quality. Evidence for content validity was minimal and therefore not extracted and synthesized for all PWMs. Conclusion This review provides updated evidence on the measurement properties of existing generic PWMs for children and adolescents. This review only included articles published in the English language and results are limited and might be biased. More studies are needed to further assess those instruments in a wider range of population types, countries, and disease groups. | Nan Luo | Descriptive Systems, Youth | 22800 | Completed | 2021 | 2021 |
| 217-EO | Promoting and Supporting the use of EQ-5D instruments in China | Since 2017, China’s National Healthcare Security Administration requires economic evaluation (mainly cost-utility analysis) reports when they renew/extend the drug formulary for the national healthcare insurance plans, which cover more than 95% of the Chinese population. Pharma and consulting companies and researchers who conduct economic evaluations in China are therefore increasingly interested in preference-based measures. In addition, health care providers and researchers are interested in patient-centred care, especially in the oncology area. However, relevant Chinese stakeholders do not have a lot of opportunities to systematically learn the details of the EQ-5D instruments, such as how to obtain the instrument, how to use EQ-5D in their studies, and how to apply the instruments beyond economic evaluations. Furthermore, there is a lack of effective communication channels between the EuroQol Group and Chinese EQ-5D end-users. Therefore, this proposed project aims to promote and support the use of EQ-5D instruments in China through webinars and other knowledge translation channels; by increasing awareness about the EQ-5D instrument, EQ-5D researchers (EuroQol Group members), and EQ-5D-related studies; providing guidance on how to obtain the EQ-5D instruments for commercial and non-commercial uses, how to apply EQ-5D in economic evaluations and beyond economic evaluations; and showcasing successful examples of large-scale applications of EQ-5D to encourage relevant Chinese stakeholders to experiment in this aspect. We anticipate 1000 attendees for each webinar on average. We will also establish and pilot a platform for direct communication to the EuroQol Group for Chinese EQ-5D end-users. | Xuejing Jin | Education and Outreach | 22400 | Ongoing | 2021 | 2022 |
| 20200060 | Grant to develop the outcomes-research component of the intended Capacity-2 study | Capacity-2 aims to extend the current multicenter Capacity-clinical registration with 6 month outcome data, including EQ-5D/EQ-VAS; these data would allow to document whether - as suggested by preliminary imaging and pathophysiological findings - whether specific cardiovascular complications arise after a significant covid infection requiring hospital admission. Following the received information, about 30-40 (Dutch) hospitals participate in Capacity at large. The currently projected follow-up study aims to follow up at least 500 patients, with the option that more hospitals join (incl. international). The developmental award covers IT-associated costs which relate tot the projected outreach and data collection 6 month after first discharge of qualifying patients (see Capacity-2 protocol). Part of the data collection includes clinical parameters (incl. history taking), imaging data, and biomarkers. The other part of the data collection consists of a dedicated health questionnaire, primarily containing PROMs and some data required to process or interprete the outcome data. This questionnaire will also contain a.o. the EQ-5D and the EQ-VAS. | F Asselbergs | Populations and Health Systems | 29500 | Ongoing | 2020 | |
| 223-RA | Content validity and measurement properties of the EQ-5D-3L and EQ-5D-5L in epilepsy patients in a low-income setting | Abstract Introduction: Although EQ-5D has been used in several studies in epilepsy patients, most have used the EQ-5D-3L. The few studies that have systematically assessed the instrument’s psychometric properties have produced inconsistent results and some research has indicated that the instrument may not perform well in this population. Notably, however, very few studies have examined the performance of the EQ-5D-5L in epilepsy and there has been no direct comparison of the 3L and 5L versions in epilepsy. Additionally, there has been no research assessing EQ-5D’s measurement properties in epilepsy in low-income countries, where the burden of disease is greatest, and no investigation anywhere of the intrument’s content validity for use in epilepsy. The aim of this study is therefore to perform comparative assessment of the reliability, validity, and usefulness of the 3L and 5L versions in epilepsy patients managed in a low-income setting. Method: Mixed-method study will be conducted in epilepsy patients attending Ayder Comprehensive Specialized Hospital, Ethiopia. Measurement properties of the EQ-5D-3L and EQ-5D-5L will be assessed in approximately 200 adult patients. Patients will complete EQ-5D-3L and EQ-5D-5L, EQ-VAS, and PHQ-9. Socio-demographic information will also be collected and medical records consulted to categorise patients on key clinical parameters for known groups’ assessment. The two EQ-5D versions will be compared in terms of feasibility, test-retest reliability, ceiling effects, discriminative power and validity. Patient preferences for the two versions will be elicited. Content validity will be investigated in FGDs of epilepsy patients, their caregivers and through interviews with clinical staff. | Meles Tekie | Descriptive Systems | 24167 | Ongoing | 2021 | 2024 |
| 214-RA | Measurement properties of the EQ-5D-Y: a systematic review | **Aims:** To perform a systematic review on the EQ-5D-Y (EQ-5D-Y-3L, EQ-5D-Y-5L) psychometric properties. **Methods:** The following electronic databases will be searched: MEDLINE, EMBASE and EuroQol Group publication database. Additional references will be obtained from reviewed articles. No study design restrictions will be implemented. The search strategy will be focused on the EQ-5D-Y instrument. Studies on EQ-5D-Y measurement properties will be selected during the abstract selection process and full-text screening. Two authors will independently screen the titles and abstracts of studies resulting from the searches, and then – full texts of selected articles. The quality of studies will be assessed according to the determined criteria. We will not exclude any relevant studies but will highlight any concerns about quality. Data from studies meeting the inclusion criteria will be extracted using a pre-determined extraction form. Measurement properties will be summarized based on the type of property assessed (validity, test-retest reliability, responsiveness, feasibility, distributional properties, informativity). We will try to explain the heterogeneity in results between studies. Results will be presented in a narrative and tabular form. Clinical areas with sufficient data on EQ-5D-Y psychometric properties and areas which should be studied in the future will be indicated. | Dominik Golicki | Descriptive Systems, Youth | 31140 | Completed | 2021 | 2021 |
| 224-RA | A review of the impact of a one day versus a seven-day recall period on domains from the EQ-5D and EQ-HWB instruments | Method: This targeted review integrates quantitative and qualitative literature across health, economics, and psychology to explore the effect of a one-day (or ‘24 hour’) versus seven-day (or ‘one week’) recall period. We extracted results relevant to six domains with generic health relevance: physical functioning, pain, cognition, psychosocial wellbeing, sleep-related symptoms and aggregated disease-specific signs and symptoms. Quantitative studies compared weekly recall scores with the mean or maximum score over the last seven days or with the same day recall score. Results: Overall, across the 24 quantitative studies identified, 158 unique results were identified. Symptoms tended to be reported as more severe and health-related quality of life (HRQoL) lower when assessed with a weekly recall than a one-day recall. A narrative synthesis of 33 qualitative studies integrated patient perspectives on the suitability of a one-day versus seven-day recall period for assessing health state or quality of life. Participants indicated a preference for one-day recall for reporting symptoms, except where conditions were characterised by high symptom variability, or where PROMs concepts required integration of infrequent experiences or functioning over time. Conclusion: This review identified a clear trend toward higher symptom scores and worse quality of life being reported for a seven-day compared to a one-day recall. A better understanding of the impact of using different recall periods within PROMs and HRQoL instruments will help contextualise future comparisons between instruments. | Peasgood | Descriptive Systems | 24720 | Completed | 2021 | 2021 |
| 244-RA | The impact of recent health events and fluctuations in health status on the assessment of health today using the EQ-5D-5L: A mixed-methods study among people with dementia and their caregivers | Background: This project aimed to quantify the frequency of health fluctuations over time, identify affected HRQoL dimensions and evaluate whether past fluctuations are considered in assessing today's health using the EQ-5D-5L in people living with dementia where spells of good and bad days are common. Methods: This study was an explorative, single-group, observational study with daily measure points that combined quantitative and qualitative (mixed) methods. Caregivers of persons with dementia completed a daily diary for 14 days, documenting health fluctuations and the affected HRQoL dimension. Also, caregivers and patients completed the EQ-5D-5L (proxy- & self-reported) on days one, seven and 14. Subsequently, caregivers were interviewed about documented health fluctuations and whether these fluctuations were considered in the EQ-5D-5L assessment of today's health. Results: Health fluctuations occurred in 96% of cases and every second day (50% of daily assessments). The most frequently affected HRQoL dimensions were memory and mobility, followed by concentration, sleep, pain/ discomfort, and usual activities. A higher fluctuation in the diary was associated with a higher EQ-5D-5L health state variation. Patients with a moderate to high fluctuation had the highest LSS and health utility change and the highest non-adherence to the EQ-5D-5L recall period (31% vs 17%) compared to patients with a low health fluctuation. The non-adherence to the EQ-5D-5L recall period of today was also significantly higher in patients with improved health states than in patients with deteriorated health states (37% vs 9%), which was confirmed by qualitative interview data. Conclusion: Health state fluctuations frequently occur in dementia. A higher fluctuation was associated with larger changes in health utilities and non-adherence to the EQ-5D's recall period of today. However, the results are based on small sample size, limiting its generalizability. Therefore, further research is needed to confirm demonstrated results. Secondly, future research should evaluate if longer recall periods, like those of the EQ-HWB(-S), capture recurrent health fluctuations more appropriately, resulting in higher reliability and recall period adherence. | Michalowsky, Bernhard | Descriptive Systems | 49060 | Completed | 2020 | 2023 |
| 194-RA | Assessing older people's health related quality of life in aged care settings: unravelling the EQ-5D self-report proxy conundrum. | This project focused on a program of work to address the unique challenges in measuring quality of life with older people in aged care. There is ongoing debate surrounding the ability of frail older people with cognitive impairment and dementia to self-report their own health-related quality of life (HRQoL). Despite increasing calls for inclusivity and self-assessment of HRQoL where ever possible, proxy-assessment of older people’s HRQoL (by family members or health/aged care professionals) is often used as the default option. This project applied an innovative mixed methods approach, incorporating qualitative think aloud and eye tracking technology in older people who self-completed the EQ-5D-5L, along with proxy family member data collection of HRQoL using the EQ-5D-5L from two proxy perspectives; proxy-proxy and resident-proxy. The project has facilitated a more detailed understanding of the impact of cognitive impairment and dementia on self-assessed HRQoL for older people in residential aged care settings using the EQ-5D-5L. The project has also provided an assessment of the impact of proxy perspective on the inter-rater agreement of self- and proxy-reported quality of life. | Julie Ratcliffe | Descriptive Systems, Populations and Health Systems | 97287 | Completed | 2021 | 2022 |
| 221-RA | Testing two alternative TTO methods for valuation of EQ-5D-Y health states by trading life years in adulthood | Introduction: One drawback of the current cTTO method for the Y valuation is that it works by asking respondents to consider shortening a 10-years-old child’s life for better health. Although it is hypothetical, the cTTO task could be upsetting and abhorrent to some respondents. Also, there is concern that adult respondents are unwilling to trade child life years, and consequently many studies reported cTTO values of Y valuation studies higher than the cTTO values of corresponding adult states. In order to overcome this potential issue, we conceptualized, and pilot tested two alternative TTO variants named the Parent TTO (PTTO) and lag-time TTO (LTTO). Both methods ask respondents to trade adult life years. We hypothesized that they have higher acceptability and would generate lower values compared to cTTO. Method: We collected PTTO and LTTO data for the 10 health states included in the EQ-5D-Y valuation protocol from a general population sample in China. The data collection was piggybacked on the China EQ-5D-Y valuation study, using three interviewers with experience using EQ-VT (two interviewers participated in the China Y study, one interviewer participated in two methodological study). For comparison, the cTTO data, including cTTO values, feedback questions and time etc. were drawn from the China EQ-5D-Y study. We compared the methods in terms of acceptability (using three feedback questions: easy to understand, easy to tell the difference, easy to make the decision), feasibility (time to complete the practice task, time to value the 10 states) and characteristics of TTO values (mean and data distributions). Results: In total, 304 participants were included (cTTO: 100; LTTO: 102; PTTO: 102) in this study. On a 5-point Likert scale, the mean score of the ‘easy to understand’ question was 1.18 (SD: 0.58), 1.45 (SD: 0.91) and 1.65 (SD: 1.02) for cTTO, LTTO and PTTO respectively. The mean score of the ‘easy to differentiate’ question was 1.45 (SD: 0.91), 1.94 (SD: 1.08) and 1.86 (SD: 1.24) and the mean score of the ‘difficult to decide’ question was 3.61 (SD: 1.29), 2.97 (SD: 1.33) and 3.02 (SD: 1.50) respectively. The mean (SD) time spent on the wheelchair example was 276.34 (147.51), 350.33 (140.28) and 454.44 (139.92) seconds for cTTO, LTTO and PTTO, respectively. The mean (SD) time spent on valuing each of the 10 states was 102.97 (29.48), 134.66 (49.69), 141.72 (47.07). The mean (SD) TTO values of all 10 states were 0.463 (0.494), 0.387 (0.555) and 0.123 (0.710). All tests were significantly different when using cTTO method as references, except that the mean value comparison between cTTO and LTTO. LTTO and PTTO showed clear clusterings at 0 and -1 respectively; PTTO had more values on the negative value range. Discussion: By designing and testing these two alternative TTO methods to trade-off life adult years, we found participants did not find the TTO tasks more acceptable and feasible, but these two methods do produce values that are more similar to the EQ-5D-5L values. We also found the TTO values may be affected by the parental status and age of the respondents suggesting that researchers to pay attention to the sample representativeness when conducting an EQ-5D-Y valuation study. | Zhihao Yang | Valuation, Youth | 49760 | Completed | 2021 | 2021 |
| 225-RA | Assessing and comparing psychometric properties of both 3L/5L of EQ-5D-Y and adult EQ-5D versions in adolescents with prevalent disease conditions in Ethiopia | Introduction: The EQ-5D-Y user guide suggests that either the EQ-5D-Y or adult EQ-5D versions can be used for respondents aged 12-15 years. Given that the simpler version of EQ-5D-Y (the EQ-5D-3L) may be preferred in some contexts, it is important to test both versions with a range of health impairments to gain information on the dimensions, items and the psychometric performance of the instrument. The aim of this study was to assess and compare the psychometric properties of the Adult EQ-5D-3L (3L) to the youth EQ-5D-Y-3L (Y-3L) and EQ-5D-5L (5L) and EQ-5D-Y-5L (Y-5L) in healthy adolescents aged 12 – 17 and those with a range of health conditions. Methods: Adolescents with health conditions were recruited from the neurologic and infectious clinics at Tikur Anbessa Specialized Hospital, and school (healthy) children from different governmental schools in Addis Ababa, Ethiopia. The feasibility, reliability, and known group validity of both 3L/5L of EQ-5D-Y and adult EQ-5D versions was tested and compared in a cross-sectional study among adolescent patients aged 12–17 years with HIV and epilepsy health conditions and in a control group of ‘healthy (school children)’ adolescents (n≈ 425). Participants completed the 3L and Y-3L OR 5L and Y-5L, the order of questionnaires were randomized and separated by a cognitive task. Preference for either of the two versions (adult vs youth) was also assessed. Test-retest reliability and responsiveness EQ-5D-Y-5L was examined using the Y-5L after one month of the first visit (n= 56, n= 40 respectively). Results: 425 (186 school sample (healthy), 106 Epilepsy and 133 HIV) participants were included in the sample for analysis. The number of missing data in all dimensions of the EQ-5D (both adult and youth versions) were negligible, so the feasibility was acceptable. The proportion of inconsistent responses ranged from 7- 18% and 10-32% moving from EQ-5D-3L to EQ-5D-Y-3L and from EQ-5D-5L to EQ-5D-Y-5L, respectively. The Y-5L showed moderate to high association for test-retest reliability across dimensions of level sum score (LSS) ICC score of 0.959 (95% CI, 0.931,0.975) and VAS ICC score of 0.793 (95% CI, 0.671, 0.873) in individual with unchanged chronic health conditions and for the general population. The findings revealed that the Amharic EQ-5D-3L (3L) and EQ-5D-5L (5L) and youth versions EQ-5D-Y-3L (Y-3L) and EQ-5D-Y-5L (Y-5L) has significant known group validity as shown by the difference in scores among disease groups (HIV vs Epilepsy, HIV vs Healthy, and Epilepsy vs Healthy). Conclusion: The three and five levels of the EQ-5D youth and adult descriptive systems have comparable psychometric performance, and the results has shown that the Amharic EQ-5D-5L(-Y-5L) and EQ-5D-3L(-Y-3L) are valid, reliable, and feasible instruments for children/adolescents across different disease conditions and healthy children/adolescent populations in Ethiopia. | Abraham Gebregziabiher | Descriptive Systems, Youth | 24693 | Completed | 2021 | 2021 |
| 233-RA | Exploring the use of EQ-5D-3L in measuring population health and studying health inequalities in China: evidence from National Health Services Surveys (2008, 2013 and 2018) | This project aimed to generate EQ-5D-3L population norms for China; to investigate inequalities in health across social determinants of health; and to describe changes in population health between 2008 and 2018. We had planned to use three waves of the largest national representative population health survey data – National Health Services Survey (NHSS). We had obtained data access (oral) approval from NHSS data PI (also co-investigators on this project: Yaoguang Zhang and Ling Xu) at the time of submitting the proposal (Oct 2020). However, our access to the data was delayed due to several rounds of domestic COVID-19 outbreaks in China and domestic travel restrictions, particularly to Beijing. The NHSS data centre is located in Beijing and all the analyses are required to be done on-site at NHSS data facilities. In November 2021, China released new regulations on data sharing and data security, particularly for projects supported by international organization/funds. All NHSS data access approvals have been escalated to Vice Minister level. During the similar period, the NHSS PI has been promoted to other departments and left NHSS data center. We have made every effort to explore a number of options for completing the project as proposed, including: our Chinese colleagues undertaking the analyses on-site at Ministry of Health secure data facilities, under supervision, and strictly limiting any sharing to results tables/statistical output; providing an official support letter from Nanjing Medical University (where co-PI Jiaying is based) to the NHSS data center for internal clearance; and several efforts at personal correspondence with MoH officials. Unfortunately, the circumstances appear to restrict all potential uses of NHSS data for research purposes (i.e. for both domestic and international research), and all avenues of further enquiry have been exhausted. In August 2022 we informed the senior scientist and our advisors about these issues, and in Oct 2022 we submitted a memo to the Exec on this issue. We considered a number of options for using alternative regional data sets, but none would have allowed us to fully achieve what we had originally proposed to do before access to the national health survey data was denied. We consider the best option is to cancel the project so the funds can be released for other uses. We have had made quite a bit of progress in producing an SAP, hosting the first advisory group meeting (in June 2021) and quite detailed outline/draft papers, up until the point the data access was withdrawn. We have included those materials as attachment, in case they are useful for future projects. We thank the Exec and office for their understanding about the circumstances affecting this work. | Nancy Devlin | Populations and Health Systems | 82300 | Completed | 2021 | 2022 |
| 196-RA | Validity of the EQ-5D-3L and EQ-5D-5L in advanced Melanoma | There is limited evidence on the validity of the EuroQol-5Dimensions (EQ-5D) in advanced melanoma. This study aims to assess and compare the validity and responsiveness of the EQ-5D-3L and the EQ-5D-5L in patients with advanced melanoma. We will use data from the high-quality nation-wide Dutch Melanoma Treatment Registry (DMTR) containing data on patient and disease characteristics and, for about 1280 patients, data on Patient Reported Outcome Measures (PROMs) including the EQ-5D-3L, EQ-5D-5L, Visual Analogue Scale (VAS) and the Functional Assessment of Cancer Therapy for Melanoma (FACT-M). For assessing the validity of the EQ-5D, we will first compare feasibility, content and construct validity, and responsiveness of the three- and the five-level version. After that, we will assess validity by comparing observed and predicted outcomes of the three- and five-level version. To do so, we will first regress the EQ-5D-3L and EQ-5D-5L scores on the FACT-M scores to obtain a mapping algorithm for each version. After that, we will predict EQ-5D index scores for both patient groups (3L and 5L) using our developed mapping algorithm for its counterpart version (3L for 5L and vice versa). We can then head-to-head compare observed and predicted EQ-5D scores to assess validity of both EQ-5D versions. This study will add evidence to the current body of knowledge of the EuroQol group regarding the validity and responsiveness of the EQ-5D in advanced melanoma. It will also give valuable insights into the validity of using the EQ-5D-3L in comparison to the EQ-5D-5L. | Margreet Franken | Descriptive Systems | 25000 | Ongoing | 2021 | 2022 |
| 216-RA | Exploring the validity of EQ-5D-5L in Indigenous people of Canada | Background. Worldwide, there is a need to recognize the distinct health needs of Indigenous people, address inequalities of health experienced by Indigenous people, and improve the appropriateness of health care services and measures of chronic disease. We propose to investigate the application of traditional approaches to measuring and valuing health, based on a better understanding of preferences and values of Indigenous people of Canada. We aim to explore the validity of the EQ-5D and traditional choice-based health valuation tasks, and make recommendations for the use of EQ-5D-5L in Indigenous people and its application in evaluating effectiveness of healthcare. Methods. This project will use mixed methods, informed by an on-going systematic review to describe the application, development, and performance of preference-based measures in Indigenous people. Face and content validity of the EQ-5D-5L and interpretation of traditional stated choice and health valuation tasks will be explored using a qualitative and think-aloud approach. We will further investigate current approaches by examining stated preferences for attributes of health using multiple stated choice techniques (TTO and DCE) to explore differences between Indigenous and non-Indigenous people. Expected Results. This research will determine the extent to which the EQ-5D-5L captures health as conceptualized by Indigenous people, and explore whether current approaches to measuring health state preferences fully represents their values and preferences. Recommendations will be made regarding the application of EQ-5D-5L and valuation methods used in the EQ-VT protocol in these populations, and potential modifications or methodologic approaches that may benefit this group. | Jeff Johnson | Descriptive Systems | 119441 | Ongoing | 2021 | 2024 |
| 215-2020RA | Translating the ‘Methods for analysing and reporting EQ-5D data’ into Chinese | The use of EQ-5D in health research has been steadily increasing in China, but many studies published in Chinese journals lack proper guidance in analyzing and reporting EQ-5D data. To address this gap, we undertook the translation of the book “Methods for Analysing and Reporting EQ-5D Data into Chinese”, making this essential resource accessible to Chinese-speaking researchers. The project was carried out by a team of bilingual EuroQol members, who collaborated closely to ensure the accuracy and consistency of the translation. Despite the team's expertise, challenges arose due to inconsistencies in language across sections drafted by different authors, which complicated the translation process. The use of AI tools, such as “Claude,” during the typesetting stage helped identify and correct grammatical errors and inconsistencies, significantly improving the final version. We also encountered terminological variations in the original text, such as "health state" vs. "health profile" and "EQ-5D index" vs. "EQ-5D value" vs. "EQ-5D utility," which prompted the suggestion of a standardized glossary for future work. Through this translation project, we aim to enhance the quality of EQ-5D research in China by providing researchers with clearer guidelines for analysis and reporting. Ultimately, this effort may improve the rigor and reliability of Chinese EQ-5D studies, fostering better health research and decision-making in the region. | Zhihao Yang | Education and Outreach | 26530 | Completed | 2021 | 2024 |
| 229-RA | Examining the psychometric properties of a split version of the EQ-5D-5L anxiety/depression dimension in patients with anxiety and/or depression | The EQ-5D is the most widely used tool to measure health-related quality of life to guide resource allocation decisions in health care. However, some health dimensions that the tool comprises are considered ambiguous, particularly the composite dimensions. The current study aimed to explore differences in self-reported responses to the composite and decomposed anxiety/depression (A/D) dimension of the EQ-5D-5L and evaluate the psychometric performance. Patients with anxiety (n=149), depression (n=159), and both anxiety and depression (n=154) were recruited from a hospital setting in Ethiopia. The standard EQ-5D-5L with the added decomposed version of the A/D dimension was used in a random order of decomposed and composite dimensions. In addition, other validated tools, such as the patient health questionnaire -9 (PHQ-9) and a brief measure for assessing generalized anxiety disorder (GAD-7), were used. From the total respondents, 69.5% reported a problem (slight to extreme) on the EQ-5D's A/D dimension, while 74% and 76.2% reported a problem with decomposed anxiety and depression dimension, respectively. A crosstab analyses by clinical diagnoses showed differences in frequency of problems reported on the composite A/D dimension (patients with anxiety=69.1%, patients with depression=47.8%, both=92.2%) compared with decomposed anxiety dimension (patients with anxiety=75.8%, patients with depression=52.2%, both=94.8%) and decomposed depression dimension (patients with anxiety=69.8%, patients with depression=62.9%, both=96.1%). The decomposed depression dimension has shown a greater correlation (r=0.64) than decomposed anxiety dimension (r=0.59) with the composite A/D dimension of EQ-5D-5L. The decomposed 'depression' dimension has also shown a greater correlation with PHQ-9 and GAD-7 than the composite EQ-5D-5L A/D dimension (better convergent validity). A one-way ANOVA analysis revealed that decomposed and composite A/D dimensions differentiate patients based on the severity of anxiety and depression (good known group validity). The findings also suggest that adding either a decomposed or composite A/D dimension to the tool's four dimensions increases both absolute and relative informativity, as evidenced by increases in Shannon index (H') and Shannon Evenness index (J'). However, adding the two extra dimensions (decomposed anxiety and depression) increases absolute informativity (H') but not relative informativity (J'), as evidenced by the highest value of the H' with no difference in J'. Overall, findings suggest that the EQ-5D-5L version with decomposed dimensions perform better than the composite A/D version, and further research may be required in other population groups to strengthen the evidence. | Yared Belete Belay | Descriptive Systems | 24780 | Completed | 2021 | 2022 |
| 209-RA | Building in latent class support to xreg R package – simplifying access to linear and non-linear, latent class, random effects, censored/interval, and hybrid regression methods | The ‘xreg’ package developed by Rand is designed to provide easy access support for complex regression models in the free, open-source software R. Initially built as an R port of Ramos-Goñi ‘hyreg’ function from STATA, xreg functionality has been greatly expanded over time. Currently, xreg allows for different kind of regressions (linear and non-linear) including sequential or parallel fitting of multiple, partially or full overlapping functions; simultaneous fitting over more than one dataset (e.g. TTO and DCE coded separately); coefficient fixation/masking and heteroscedastic error estimation. This allows xreg to be used to directly estimate complex models such as e.g. a TTO/DCE hybrid where TTO is non-linear, heteroscedastic, random intercept, and censored; while DCE is a corresponding non-linear logit. Given the unique combination of fitting features, xreg has been used in an increasing number of EQ-5D projects and publications. However, some core functions run very slowly. The project aims to program an inner expectation-maximization algorithm (EM) wrapper to xreg, designed to allow easy access to latent-class regression in conjunction with e.g. a hybrid model. Latent class regression can be used to account for preference heterogeneity in the data and therefore offers a solution to this increasingly important problem. We also aim to improve the interface for random effects beyond random intercepts (which is not easy to use yet), clean up old core function code to speed up, and publish the package on CRAN (currently only available on github) along with a paper on the statistical package. | Kim Rand | Valuation | 22700 | Ongoing | 2022 | 2025 |
| 242-RA | Interviewer Administered and Self-Complete versions of EQ-5D-5L: agreement and psychometric properties | The EuroQol Group has recently developed the Interviewer Administered (IA) version of EQ-5D. This IA version may be useful for respondents who are illiterate, low socio-economic status, low vision problem, patients who are unable to self-complete the questionnaire, or remote telephonically collected data. Usually the self-completed (SC) version was used and then the interviewer read out loud the items to their respondents (assisted SC). Countries such as Indonesia and India could utilize this IA version for collecting data from the aforementioned groups. It remains to be tested whether different modes of administration: IA, SC, and assisted SC, are equivalent. We will recruit 600 respondents in three groups: literate, illiterate, and patient groups. Characteristics for sampling are different residences (urban and rural areas), age group (below 30, 30-50, and above 50 years), and different types of job (no, casual, and permanent). Sociodemographic and health condition questionnaire, EQ-5D-5L SC and IA versions, General State of Health will be completed by the respondents. The IA and SC version will be completed by the literate groups, IA and assisted SC by the illiterate and patient groups, in randomly order three days apart. Individual interview will be done with illiterate groups to investigate the feasibility of completing EQ-VAS with the IA version, because no visual prompt is available for visualizing the vertical line of EQ-VAS. Agreement between dimensions’ responses, feasibility, ceiling effect, classification efficiency (or informativity) will be calculated and compared between the three versions. Interview data will be analysed using a thematic analysis approach. | Fredrick Dermawan Purba | Descriptive Systems | 44370 | Ongoing | 2021 | 2022 |
| 222-RA | Pilot of the UK EQ-5D-5L TTO valuation to assess equivalence and feasibility of online interviews and face-to-face interviews during the COVID-19 pandemic | Objective: Recent evidence has established the feasibility of generating time trade-off (TTO) utility values using online videoconference (video) interviews, but has not assessed whether the results are equivalent to values elicited via face-to-face in-person interviews, that were widely used prior to the COVID-19 pandemic. This study examines the equivalence, feasibility and acceptability of video and in-person interviews in generating TTO values. The study further aims to inform the choice of mode of administration for the new UK EQ-5D-5L valuation of the EQ-5D-5L and future valuation studies. Methods: Sample participants in Sheffield and Oxford, England were recruited using a blended approach of different methods to attract different people to be interviewed, and were sampled based on age, gender, ethnicity, and index of multiple deprivation. Participants were allocated to be interviewed either via video or in-person by 6 trained interviewers. Participants completed TTO tasks for the same block of 10 EQ-5D-5L health states using the EQ-VTv2 software. Feasibility, acceptability and equivalence was assessed across mode using: sample representativeness; participant understanding, engagement and feedback; participant preferred mode of interview; data quality; mean utility and distribution of values for each health state; and regression analyses assessing the impact of mode whilst controlling for the sociodemographic characteristics of participants. Results: The video and in-person samples had statistically significant differences in terms of ethnicity and income levels but were broadly similar across all other characteristics. Video interviews generated marginally lower quality data across some criteria. Participant understanding and feedback was positive and similar across modes. TTO values were similar across modes (mean and distribution for each state); whilst mean TTO values were lower for the in-person interviews for the most severe states, most noticeably the worst state, in most regression analyses the mode dummy was insignificant. There was no clear preference of mode across all individuals, though the characteristics of participants preferring to be interviewed across each mode differs. Discussion: The results demonstrate that video and in-person TTO interviews are feasible and acceptable. Both generated good-quality data, though video interviews had lower quality data across some criteria. Whilst TTO values differed across the modes for the more severe states, mode does not appear to be the cause. The sample is highly educated across both modes, and it is possible that data quality and TTO values by mode could differ in a less educated sample. The study results suggest that whilst TTO data collection using either mode is feasible, acceptable and will not in itself affect TTO values, the characteristics of people willing to be interviewed differs for each mode, and this in turn may impact on sample representativeness for some characteristics and the TTO values. | Donna Rowen | Valuation | 171453 | Completed | 2020 | 2022 |
| 192-VS | Valuation of the EQ-5D-Y in Hungary | Background: The Hungarian health technology assessment guidelines recommend the use of the EuroQol instrument family in quality-adjusted life year calculations. However, no national value set exists for the EQ-5D-Y-3L or any other youth-specific instrument. Objective: This study aims to develop a national value set of the EQ-5D-Y-3L for Hungary based on preferences of the general adult population. Methods: This study followed the international valuation protocol for the EQ-5D-Y-3L. A representative sample of the Hungarian general adult population in terms of age and gender was recruited. Overall, 996 respondents completed online discrete choice experiment (DCE) tasks and 200 respondents completed composite time-trade-off (cTTO) tasks by computer-assisted personal interviews. Adults valued hypothetical EQ-5D-Y-3L health states considering the health of a 10-year-old child. DCE data were modeled using a mixed logit model with random-correlated coefficients. Latent DCE utility estimates were mapped onto observed mean cTTO utilities using ordinary least squares regression. Results: For each domain, the value set resulted in larger utility decrements with more severe response levels. The relative importance of domains by level 3 coefficients was as follows: having pain or discomfort>feeling worried, sad or unhappy>mobility>doing usual activities>looking after myself. Overall, 12.8% of all health states had negative utilities in the Hungarian value set, with the pits state (33333) having the lowest predicted utility of -0.503. Conclusion: This study developed a national value set of the EQ-5D-Y-3L for Hungary. The value set enables to evaluate the cost-utility of health technologies for children and adolescents based on societal preferences in Hungary. | Fanni Rencz | Valuation, Youth | 2800 | Completed | 2020 | 2022 |
| 128-RA | A global survey of HTA agencies for their views on health utility instruments and data: protocol development | Organizations which are most interested in using the EuroQol Group’s instruments are health technology assessment (HTA) agencies. However, to our knowledge, only limited formal ‘market’ research has been conducted to understand these users preferences with regard to the ‘science and technology’ underlying our instruments and/or their unmet needs. The ultimate goal of this research is to assess the preferences and needs of HTA agencies around the world with regard to the collection and use of health-state utility data. In this first phase of the project, we developed a study protocol for conducting a survey that can be sent to HTA agencies across the world. We first conducted a scoping review to understand the issues and challenges in collecting, evaluating, synthesizing, and using health utility data for reimbursement decision making. We then interviewed members of HTA agencies from Singapore, Indonesia, Canada, England, Norway, Australia, New Zealand, and Argentina, to understand the issues and challenges in their work with regard to the use of health utility instruments and to get their feedback on a draft survey. Based on this, we developed a survey that can be sent to HTA agencies to elicit this feedback. | Luo Nan | Others | 50400 | Completed | 2020 | 2022 |
| 188-RA | A comparison of proxy 1 and proxy 2 of EQ-5D-Y: validity, reliability and responsiveness | When a proxy assesses a patient’s PRO, the proxy can take his or her own perspective (i.e. proxy-proxy perspective) or the patient’s perspective (i.e. proxy-patient perspective). EQ-5D-Y is available in both proxy versions – Proxy-1 and Proxy-2 which represent the proxy-proxy and proxy-patient perspectives, respectively. Currently, only South African studies compared the two proxy versions of EQ-5D-Y and findings were not consistent. As a result, no definitive recommendation can be made to users of EQ-5D-Y when proxy version is needed. The primary aim of this project is to evaluate the relative merit of the two proxy versions of EQ-5D-Y in paediatric patients. The key question we intend to answer is: Which version, Proxy-1 or Proxy-2, has better agreement with the self-complete version of EQ-5D-Y? The secondary aim is to investigate the factors affecting the agreement with the self-complete versions and to assess and compare the construct validity, test-retest reliability, and responsiveness of the two proxy versions. This study will be piggybacked onto a validation of the self-complete EQ-5D-Y in Asian children with asthma or eczema. A total of 200 patients and their parents/legal guardians will be asked to complete a survey form separately at two different hospital visits. The construct validity, reliability, and responsiveness of the two proxy versions will be investigated and compared, as well as agreement with the self-complete version using Gwet’s AC, intra-class correlation coefficient (ICC), and Bland-Altman plots as appropriate. This project will provide new information on the measurement properties of the proxy-1 and proxy-2 of EQ-5D-Y. | Nan Luo | Youth | 22120 | Ongoing | 2020 | 2024 |
| 20200050 | Startup & support cost for the UK 5L valuation study | Bernhard Slaap | Valuation | 18312 | Completed | 2020 | 2021 | |
| 96-EO | Knowledge translation for the use of EQ-5D as a PROM for routine outcome measurement in health systems | Our aims with this knowledge translation (KT) project were to synthesize and disseminate our key messages on the use of EQ-5D as a PROM for routine outcome measurement in health systems, and the use of routinely collected EQ-5D data to support decision-making at various levels within the system. Specific aims were to: • Increase awareness about the use of EQ-5D as a PROM in health systems, and highlight key implementation approaches and considerations. • Showcase applications of EQ-5D implementation within the health system, and highlight implementation methods, challenges and lessons learned. • Provide guidance on the use and reporting of routinely collected EQ-5D data to support decision-making at the micro, meso, and macro levels within the health system. • Highlight key methodological considerations and challenges in the use of routinely collected EQ-5D data. • Engage the community of EQ-5D end-users in guiding knowledge and research development around the use of EQ-5D as a PROM in large-scale applications. | Fatima Al Sayah | Populations and Health Systems, Education and Outreach | 24116 | Completed | 2020 | 2021 |
| 91-RA | EQ-5D-5L in productivity assessment according to the type of occupation | EQ-5D-5L is a descriptive system, often used to describe health states and evaluate treatment effects. Such measurements converted into utilities can be used in cost-utility analyses. In many countries, not only the direct costs, but also the costs of reduced productivity are accounted for (aka indirect costs). Indirect costs are generated by absenteeism (a worker missing from work) or presenteeism (a worker present but less productive). Hence, for cost-utility analyses to be reliable, it is important to understand how health states affect productivity. Krol et al. (2014) showed that productivity loss (presenteeism and absenteeism) can be predicted by EQ-5D-3L description. Authors, however, indicate that the results may differ between the types of occupation (also raised by Lamers et al., 2005, and Brouwer et al., 2005). In the proposed research, we would like to assess how the productivity loss (absenteeism and presenteeism) changes with EQ-5D-5L, also accounting for the type of occupation. We plan to conduct a survey in which we will ask respondents about their type of occupation, health status within EQ-5D-5L, number of hours missed from work due to illness and degree in which illness affected their productivity while they were at work. In the main part of the survey, the respondents will evaluate hypothetical health states and their impact on ability to work and predicted productivity. The results will show whether EQ-5D-5L is more sensitive than EQ-5D-3L in measuring impact on productivity and will enable using EQ-5D-5L (also historically collected data) to measure indirect cost of illnesses. | Beata Koń | Descriptive Systems | 24226 | Completed | 2020 | 2021 |
| 100-RA | Valuation of the EQ-5D-3L-Y in the Netherlands and an investigation on different proxy perspectives | Background: There is increasing interest in preference-accompanied measures of health for paediatric populations. The EQ-5D-Y-3L is one of such instruments, but the lack of a Dutch value set prevents its use in economic evaluations of health care interventions in the Netherlands. Furthermore, EQ-5D-Y-3L health states are commonly valued from the perspective of a 10-year old child. The use of this proxy perspective (henceforth called proxy-proxy) has been a source of discussion. Other perspectives could also be used, such as a substitute perspective (henceforth called proxy-substitute): i.e. adults considering what they think a 10-year old child would decide for itself. Objectives: Our main objective was to derive a value set for the EQ-5D-Y-3L for the Netherlands. Furthermore, we explore how the outcomes, dispersion and response patterns of composite time trade-off (cTTO) valuation differs between proxy-substitute and proxy-proxy perspectives. Methods: Composite Time Trade Off (cTTO) data were collected using videoconferencing interviews, with each respondent completing 10 cTTO tasks. A target sample of 400 respondents was collected, with half of the respondents being randomized to the proxy-proxy arm, and the other half to the proxy-substitute arm. Discrete Choice Experiment (DCE) data were collected using an online survey, with a target sample of 1000 respondents each completing 15 paired comparisons. DCE data were analysed using a 10-parameter mixed logit model and anchored to the QALY scale using the mean observed cTTO values. Results: The level 3 weight for pain/discomfort was the largest, followed by feeling worried, sad or unhappy, usual activities, mobility and self-care. Health state values ranged between 1 and -0.218. The use of proxy-proxy and proxy-substitute preferences yielded different EQ-5D-Y-3L valuation outcomes. For states in which children had a lot of pain and were very worried, sad or unhappy, respondents’ valuations were lower in proxy-proxy rather than proxy-substitute preferences. (by about 0.2). Within-subjects variation across health states was lower for proxy-substitute preferences than proxy-proxy preferences. Analyses of response patterns suggest that data for proxy-substitute preferences were less clustered. Conclusions: This study generated a Dutch value set for the EQ-5D-Y-3L, which can be used for the computation of quality-adjusted life years (QALY’s) for economic evaluations of healthcare interventions in paediatric populations. There are systematic differences between cTTO responses given by adults deciding for children and adults considering what children would want for themselves. Besides warranting further qualitative exploration, such differences contribute to the ongoing normative discussion surrounding the source and perspective used for valuation of child and adolescent health. | Bram Roudijk | Valuation, Youth | 81427 | Completed | 2020 | 2021 |
| 104-RA | Using TTO data to anchor DCE data and produce EQ-5D-Y value sets: comparing alternative approaches using existing and simulated data | The valuation protocol for the EQ-5D-Y-3L recommends that both discrete choice experiment (DCE) data and composite time trade-off (cTTO) data are collected. The DCE provides the key information on the relative importance of the different levels and dimensions, and the cTTO is intended to provide data to anchor the DCE data onto the full health to dead scale. However, there are multiple ways in which to conduct this anchoring. These include rescaling based on the mean cTTO values ("worst state rescaling"), mapping DCE onto mean cTTO values ("linear mapping"), and hybrid modelling. To date, there has been little research into the relative merit of these approaches. This research aimed to fill these gaps by comparing the different anchoring approaches using previously collected EQ-5D-Y-3L valuation data. Overall, it was found that, whilst the value sets produced by each anchoring method are similar, there are some notable differences which are generalisable. For example: 1) Both worst state rescaling and linear mapping will maintain the relative importance scores from the DCE data as they are linear transformations of the DCE data. 2) Worst state rescaling will produce value sets with a larger scale than both linear mapping and hybrid modelling due to prediction error. 3) Hybrid modelling and linear mapping will produce value sets that better align with the cTTO data than worst state rescaling as they use more cTTO data. Based on the current EQ-5D-Y valuation protocol, the linear mapping approach is likely to be viewed as advantageous over the worst state rescaling approach (makes better use of the data collected) and the hybrid modelling approach (insufficient data). However, the final decision on which approach to use is likely to involve some normative considerations. To aid decisions, researchers should engage with relevant stakeholders and test the sensitivity of their results based on different anchoring approaches. | David Mott | Valuation, Youth | 24860 | Completed | 2020 | 2020 |
| 82-RA | Valuing health in children: an examination of age, perspective and methodological effects (REVISED) | Introduction The first international protocol for valuing the EQ-5D-Y-3L recommends that valuation tasks are completed by adult general public respondents adopting the perspective of a 10-year-old child. This choice of perspective has been the subject of debate. Where values obtained under an own health perspective (the standard perspective used in valuing adult health states) have been found to differ from those obtained under a 10-year-old child perspective, it is unclear whether these differences are driven by the shift from thinking about adults to thinking about children, by the shift from thinking about oneself to thinking about another person, or both. It is also unclear whether the age of the child described or the valuation technique used matters. This study examines the impact on EQ-5D-Y-3L values of using different perspectives, child ages, and valuation techniques. The aim is to generate evidence that can be used to inform future methods and protocols for obtaining values for EQ-5D-Y-3L health states. Methods Two techniques (time trade-off; TTO and visual analogue scale; VAS) and four perspectives (own health, other adult’s health, 4-year-old child’s health, 10-year-old child’s health) were compared. Respondents each completed 24 valuation tasks, valuing 3 EQ-5D-Y-3L health states using both techniques and all four perspectives. They also completed debrief and priority setting questions designed to understand how they approached the valuation tasks and their wider views about how health care resources should be prioritised between adults and children, respectively. Data were collected via videoconference interviews with members of the public in England. Results 300 interviews were completed. In both the TTO and VAS tasks, and for all three health states examined, the difference in values/ratings observed between the 4-year-old child and 10-year-old child perspectives was negligible. For one of the severe health states, respondents gave substantially lower TTO values under their own health perspective than under the child health perspectives, with values under the other adult’s health perspective lying in between. These differences observed in the TTO data were not observed in the VAS data, where mean health state ratings were similar across all perspectives. Of the various statements presented to respondents describing factors they might have considered in completing the valuation tasks, the statement ‘I find it difficult to choose a shorter life for a child’ was the one that was most frequently selected. Conclusions Differences between the own health perspective and child health perspective TTO values appear to be in part due to differences in how people feel about health states for adults and health states for children, and in part due to differences in how people feel about health states for themselves and health states for other people. The fact that similar differences were not observed in the VAS data suggests that they may be an artefact of the TTO technique. Some of the study findings add to the existing evidence that adult TTO values tend to be lower than corresponding child TTO values because many people find trading life years for children more difficult. The age of the hypothetical child in the valuation tasks does not appear to substantially affect valuations. | Koonal Shah | Valuation, Youth | 126330 | Completed | 2020 | 2023 |
| 138-RA | Preference heterogeneity in health valuation: Peru EQ-VT data | Background: Preference heterogeneity in health valuation has become a topic of greater discussion among health technology assessment agencies. To better understand heterogeneity within a national population, valuation studies may identify latent groups that place different absolute and relative importance (i.e., scale and taste parameters) on the attributes of health profiles. Objective: Using discrete choice responses from a Peruvian valuation study, we estimated EQ-5D-5L values on a quality-adjusted life-year (QALY) scale accounting for latent heterogeneity in scale and taste, as well as controlling heteroskedasticity at task level variation. Method: We conducted a series of latent class analyses, each including the 20 main effects of the EQ-5D-5L and a power function that relaxes the constant proportionality assumption (i.e., discounting). Taste class membership was conditional on respondent-specific characteristics as well as their experience with the time trade-off tasks. Scale class membership was conditional on behavioral characteristics such as survey duration and self-stated difficulty level in understanding tasks. Each analysis allowed the scale factor to vary by task type and time (i.e., heteroskedasticity). Results: The results indicate three taste classes: a quality-of-life oriented class (33.35%) that placed the highest value on levels of severity, a length-of-life oriented class (26.72%) that placed the highest value on life span, and a middle class (39.71%) with health attribute effects lower than the quality class and life span effect lower than the length-of-life oriented class. The EQ-5D-5L values ranged from -2.11 to 0.86 (quality-of-life oriented class), from -0.38 to 1.02 (middle class), and from 0.36 to 1.01 (length-of-life oriented class). The likelihood of being a member of the quality-of-life class was highly dependent on whether the respondent completed the time-tradeoff tasks (p-value <0.001). The results also show two scale classes as well as heteroskedasticity within each scale class. Conclusion: Accounting for taste and scale classes simultaneously improves understanding preference heterogeneity in health valuation. Future studies may confirm the differences in taste between classes in terms of the effect of quality of life and life span attributes. Furthermore, confirmatory evidence is needed on how behavioral variables captured within a study protocol may enhance analyses of preference heterogeneity. | Suzana Karim | Valuation | 24480 | Completed | 2020 | 2022 |
| 137-RA | Navigating antithrombotic therapies with the EQ-5D: An analysis of the COMPASS Trial | The COMPASS trial was a double-blind, double-dummy, factorial randomized trial conducted at 602 centers in 33 countries. It has demonstrated that in patients with chronic stable coronary or peripheral artery disease the combination of rivaroxaban 2.5 mg twice daily and aspirin was more effective that aspirin alone in preventing major adverse cardiovascular events and mortality but with more major bleeding events. Our analysis aimed at estimating the treatment effects on patient-reported outcomes using EQ-5D-derived health utility and EQ visual analogue scale (EQ VAS) between rivaroxaban plus aspirin and aspirin alone. We used adjusted mean difference in change from baseline and odds ratio of having deterioration events. In addition, health status change between final visit and baseline was assessed. Mean health utilities were estimated for major cardiovascular events including stroke, myocardial infarction (MI), heart failure, and major bleeding that were observed in the trial. We found that both EQ-5D utilities and EQ VAS were similar between the rivaroxaban plus aspirin group and the aspirin alone group. | Feng Xie | Others | 22740 | Completed | 2020 | 2020 |
| 157-RA | Towards a patient-reported summary score for EQ-5D - revision (20190210) | Objectives EQ-5D is increasingly being used outside the context of health technology assessment (HTA), e.g. as patient-reported outcome measure in patient registries, in population health studies and in personalized medicine. For non-HTA purposes, there is no rationale for using value sets to summarize profile data. There is a clear need for a global, single summary score based on self-reported data. In this project, we first developed EQ-5D-5L patient-reported summary scores (EQ-PRSM, or PRSM) using two methodological approaches, based on dimension-specific rating scales (RS, additive and weighted by EQ VAS); and on Rasch and Item Response Theory (IRT) models. Second, we psychometrically compared six EQ-5D-5L PSRM scores. Methods The following PSRM models were developed and compared: RS additive (RSA), RS weighted (RSW and RSW2), unidimensional Rasch (Rasch), unidimensional 2 parameter IRT (2PL) and multidimensional IRT (MIRT) including items from other instruments. The comparison also included the experience-based VAS value set for Sweden (EXP) and the level sum score (LSS). PRSM scores were compared cross-sectionally and longitudinally, in terms of distributional characteristics (visually and with Shannon’s indices), convergent validity with generic and condition-specific measures, discriminatory power comparing eight patient groups to an non-diseased group and responsiveness. For cross-sectional comparisons the multi-instrument comparison (MIC) dataset was used (N=8022) and for longitudinal comparisons samples of rehabilitation patients (N=230) and stroke patients (N=112) were used. Results RSW, RSW2 and MIRT resulted in the smoothest distributions while EXP demonstrated a large upper gap. Shannon’s indices were highest for MIRT, followed by 2PL, and lowest for RSA. Convergent validity with generic and condition-specific measures was highest for RSW and EXP, and lowest for 2PL. Discriminatory power was highest for MIRT, followed by RSW2 and RSW, and lowest for 2PL and EXP. Relative efficiency of discriminatory power showed that MIRT, RSW2, Rasch and LSS were able to discriminate better than RSA, while RSW/RSW2 were superior to EXP, and MIRT was in turn superior to RSW/RSW2. Responsiveness results were mixed, with RSW2, RSW and RSA showing the best SRM results and 2PL and EXP the lowest, while for SES LSS and 2PL were highest and EXP the lowest. Conclusion In this study PRSM scores, based on two methodological approaches, were developen, and a psychometric comparison was performed of six PRSM scores based on these approaches. Overall, the weighed rating scale scores (RSW and RSW2) arguably showed the best results, followed by MIRT. The 2PL score performed poorly for mental health patients due to the low weight attributed to the anxiety/depression domain. The experience-based VAS value set for Sweden performed poorly in terms of discriminatory power and responsiveness. While PRSM scores resulting from both (RS and IRT) approaches empirically performed superior to LSS, these approaches may also be preferred for theoretical and conceptual grounds. The MIRT score however is based on external items which poses a challenge (e.g. the final PRSM score is dependent on which additional items are used), and arbitrary choices (e.g. using equal weights across dimensions). This study proves the usefulness of using patient-reported summary scores for EQ-5D-5L beyond the level sum score, for use in population health and health systems applications. | Bas Janssen | Populations and Health Systems | 68890 | Completed | 2020 | 2023 |
| 111-RA | Developing and testing a version of EQ-5D-Y for use in children aged 2-5 years using a mixed methods approach | Background: Few preference-weighted health-related quality-of-life (HRQoL) measures exist for use in children under 5 years of age limiting their inclusion in cost-utility analyses and resulting health care resource allocation decisions. This project sought to develop and assess a modification of the EQ-5D-Y HRQoL instrument for children aged 2-4 years. Methods Purposive sampling at the Royal Children’s Hospital in Melbourne, Australia was used to recruit parents of children 2-4 years for online focus groups. Parents provided feedback on each dimension of the EQ-5D-Y. Qualitative findings guided the design of adaptations to the instrument that were then piloted and refined. Parents completed an online survey and a 4 week follow up to test the psychometric properties of the adapted versus original EQ-5D-Y instrument. Families were recruited from the Royal Children’s Hospital and via online panels. The distribution of responses was described for the total sample and children with and without special health care needs. Psychometric tests for ceiling effects (>15% of responses at highest level), known group validity (Cohen’s d effect sizes for pre-specified groups), test-rest (intraclass correlation coefficients) and responsiveness (standardized response mean effect sizes) were conducted using level sum scores. Results Online focus groups were conducted with 19 parents of well children and those with medical conditions. Parents provided a range of examples of how each domain related to their children, and suggested alternative wording to improve the applicability of the instrument to this age group. Modifications were made on this basis and tested again with a subset of original focus group participants to refine. 842 parents of children aged 2-4 years completed the online survey with 513 (61%) completing follow-up. Respondents reported more problems in each dimension with the adapted EQ-5D-Y than with the original instrument (for example, 66% reported no problems on the Usual Activities dimensions on the adapted EQ-5D-Y-5L version compared to 78% with the original instrument). The adapted instrument more strongly differentiated children with and without special health care needs based on Cohen’s D effect size compared to the original (EQ-5D-Y-5L adapted ES=1.01 (0.83-1.19), EQ-5D-Y-5L original ES=0.83 (0.52-1.14)). Test-retest was generally more reliable for the adapted versus original instrument. Responsiveness for children with improved and worsened health [assessed using a general health rating scale] at 4 weeks was consistent with size of effect expected (EQ-5D-Y-5L adapted- better health SRM=0.2, no change in health SRM=-0.05, and worse health SRM=-0.41). Conclusions and implications: It was possible to produce an adapted version of the EQ-5D-Y with considerable input from parents. The adapted EQ-5D-Y for 2-4 year olds was found to be more sensitive, valid and reliable than the original EQ-5D-Y, and thereby provides a means of extending measurement of HRQoL into this younger age group with a relatively simple modification. This in turn provides an important step towards valid and consistent measurement of HRQOL across the lifespan and may make it possible to obtain values for health states in these younger ages. However, important questions remain in relation to valuation of the adapted EQ-5D-Y, including whether a specific value set is required or a mapping approach, consistency across age for utility values generated, appropriate sample and perspective for valuation, and some feasible approaches for anchoring. | Kim Dalziel | Youth | 87200 | Completed | 2020 | 2023 |
| 69-RA | A mixed methods approach to testing alternative recall periods for EQ-5D (2nd revision) | Background: EQ-5D-5L with its recall time of “today” may limit its ability to capture episodic symptoms and exacerbations in chronic obstructive airway diseases (OAD). We examined whether longer timeframes and changing the intensity response scales to frequency scales could improve the measurement properties of EQ-5D-5L. Methods: We used a mixed method design starting with in-depth interviews with 20 patients and clinicians to elicit preferred timeframes using concept elicitation techniques and content analyses. We then administered the top four preferred variants using one- & four-weeks’ timeframes with the original intensity or an alternative frequency response scale alongside EQ-5D-5L and St George Respiratory Questionnaire (SGRQ) to OAD patients during two different visits. We compared the ceiling effects and construct validity by testing a priori hypotheses in relation to SGRQ and clinical outcomes via correlation and receiver operating characteristic (ROC) analyses, respectively. Follow-up patients were categorized into “better”, “stable”, and “worse” groups to assess reliability using intra-class correlation coefficient (ICC) or Cohen’s Kappa (k), and responsiveness using ROC analysis. Results: 184 patients (mean [SD] age: 54[18]; female: 37.0%) completed baseline assessments.120 patients also completed follow-up assessments (mean [SD] interval: 2.8 [1.7] months). The ceilings were lower in the variants compared to EQ-5D-5L (p<0.001). Reliability of the variants were comparable to or higher than EQ-5D-5L. The c-statistic values derived from ROC analyses of the variants were consistently higher than EQ-5D-5L. Conclusions: Use of longer timeframes with the original intensity or the frequency response scales may improve EQ-5D-5L’s psychometric properties in OAD patients. | Nan Luo | Descriptive Systems | 65280 | Completed | 2020 | 2022 |
| 109-RA | Improving predictive precision in valuation studies using non-parametric techniques | Background: Health utilities derived from value sets for the EQ-5D-5L are commonly used in economic evaluations, however the precision of the value sets is of the same order of magnitude as reported minimum important differences (MIDs), which typically range from 0.05 to 0.1. We examined whether modelling spatial correlation among health states could improve the precision of the value sets. Methods: Using data from 7 EQ-5D-5L valuation studies (Canada, China, Germany, Indonesia, Japan, Korea and the Netherlands) we compared the predictive precision of the published linear model, a recently proposed 8-parameter level-scale model, and two Bayesian models with spatial correlation. Predictive precision was quantified through the root mean squared error (RMSE) for out-of-sample predictions of state-level mean utilities on omitting individual states, as well as omitting blocks of states. Results: In all seven countries, on omitting single health states, Bayesian models with spatial correlation improved upon the published linear model: the RMSEs for the originally published models were 0.060, 0.055, 0.060, 0.061, 0.039, 0.050 and 0.087 for Canada, China, Germany, Indonesia, Japan, Korea and the Netherlands respectively, and could be reduced to 0.044, 0.049, 0.051, 0.053, 0.037 0.037 and 0.086 respectively on using spatial correlation. On omitting blocks of health states, Bayesian models with spatial correlation led to smaller RMSEs in just one country, while the 8-parameter model led to smaller RMSEs in 5 of the 7 countries. Discussion: Bayesian models incorporating spatial correlation and the 8-parameter models offer promising approaches to improving the precision of value sets for the EQ-5D-5L. The differential performance of the Bayesian models on omitting single states compared to omitting blocks of states suggests that designing valuation studies to capture more health states may further improve precision. We suggest that Bayesian models with spatial correlation and 8-parameter models be considered as candidate models when creating value sets, and that alternative designs be explored; this is vital given that the prediction errors in value sets need to be smaller than the MID of the instrument. | Eleanor Pullenayegum | Valuation | 32000 | Completed | 2020 | 2021 |
| 134-RA | Valuing well-being alongside health: What can and should be done? Project number 20190750 (Revised) | Objective: The newly developed EQ-HWB widened the classification system of preference-based measures to capture aspects beyond health. However, the larger number of aspects presents challenges for eliciting preferences for health and wellbeing attributes to generate a value set. This project assesses the feasibility of valuing EQ-HWB using Discrete Choice Experiment (DCE) for EQ-HWB attributes, a larger number than EQ-HWB-S. The study assesses whether DCE is a feasible method and whether results are affected by: 1) design and anchoring methods; 2) different model specifications; 3) attribute ordering of whether health or wellbeing attributes are presented first; and 4) country of participants, comparing public samples from the UK and Australia. Method: To inform the study a systematic review was undertaken of DCE health state valuation studies. EQ-HWB items for valuation were selected based on dimensionality, item performance, stakeholder preference, international and cultural feasibility, and existing qualitative evidence. This study applied mixed-methods to generate multi-dimensional evidence on valuation: 1) four focus groups with UK participants from the general public were undertaken to inform the design, wording and formatting of the large online surveys; 2) three DCE surveys with different formats were each conducted with UK and Australia general public samples; 3) DCE results were modelled for each format and country and compared. Two surveys were conducted using DCE with a duration attribute (DCETTO) with either health or wellbeing dimensions presented first (health-first DCETTO, wellbeing-first DCETTO) and one survey used a triplet design involving two profiles and death (triplet DCE-Death). Participants were recruited from existing panels to be representative for sex, age and education. DCE data were analyzed using a conditional logit model with additive main effect utility function, and a cross-attribute level effects model (CALE), assuming the disutility of all attributes had identical proportional relationship with disutility at level 5. Preference variation was evaluated by the relative importance of attributes, distribution of health states, range of anchored utilities and the proportion of states worse than dead. Results: 13 of 25 EQ-HWB items were selected for valuation. Focus group participants (n=11) found DCETTO and DCE-Death tasks using the 13 EQ-HWB attributes to be feasible. There was no evidence to support revision of the online survey following a small-scale pilot (n=100). Overall, 2017 UK and 2000 Australian participants completed one of the surveys. Modelled UK results suggest that DCETTO and DCE-Death were both feasible, though the range of utilities and proportion of health states worse than dead varied by task. Attributes with the highest utility decrements were consistent (pain, seeing and daily activities). The number of insignificant (relative to level 1 and 10% significance) and logically inconsistent attributes for DCETTO and DCE-Death were 7%/31% and 7%/33% respectively. Compared with the additive model, the CALE model utilities were more evenly distributed and had no insignificant or logically inconsistent levels. Information ordering had little effect on anchored results, but UK and Australian participants revealed varied preferences. Conclusions and contributions: This study proves that it is feasible to value a longer measure of health and wellbeing using DCE. The study has benefited from qualitative research to inform the DCE surveys and conducting the surveys across two different countries. The results indicate that both DCETTO and DCE-Death tasks were feasible though there are some impacts on results from using the different tasks. | John Brazier | Valuation | 132598 | Completed | 2020 | 2024 |
| 76-RA | A PhD grant to investigate the valuation of worse-than-dead health states | Health utility is measured on an interval scale anchored by 0 and 1, where 0 corresponds to being dead, 1 full health, and negative values worse-than-dead (WTD) health states. While health-state valuation methods have advanced significantly in the past decades, there are still many unresolved issues in estimating the utility of WTD health states. Some prominent ones are: 1) lack of a uniform method for eliciting better and worse than dead states; 2) lack of a theoretically sound method for bounding negative values; 3) maximum endurable time; and 4) lack of sensitive elicitation methods. We propose a PhD project to systematically investigate the issue of insensitive valuation methods for WTD health states. The overall aim of the project is: 1) to ascertain the reasons for the challenges in eliciting negative utility; and 2) to develop and test new utility elicitation methods for WTD health states. Given that the cTTO used in the EQ-VT for estimating EQ-5D-5L value sets represents the state-of-the-art health-state utility elicitation method, this project will focus on analyzing the measurement issues of cTTO and testing new designs that may improve its performance. Four studies will be conducted: 1) a scoping review of articles on the valuation of WTD health states; 2) an investigation into states valued at -1 in cTTO tasks using an additional question; 3) a qualitative study of the thought processes for valuation of WTD health states using cTTO; and 4) developing new TTO variants and testing their performance in valuing WTD health states. | Nan Luo | Valuation | 150000 | Ongoing | 2021 | 2025 |
| 148-RA | Combining health and social outcomes using the EQ-5D-5L and the ASCOT – development of a pilot value set | To allocate scarce health care resources equitably across a population we have to be able to measure and value all the outcomes that matter to the population. Current measurement systems focus mostly on health, and rarely on both health and social outcomes together. This project provides a novel solution to combining the measurement of health and social outcomes, and to valuing them on the same scale. It will deliver a new and original approach to combine health and social dimensions and value them on the same scale. A key advantage of our approach is that it is based on combining the EQ-5D- 5L with another well-established instrument – the ASCOT – to measure and value health-related quality of life and social carerelated quality of life together. The advantage of such an approach is that it uses the EQ-5D-5L as the basis for combining the domains of health and social care. This builds on earlier EuroQol funded work by the project team examining preferences for the EQ-5D-5L and ASCOT dimensions, using a discrete choice experiment approach. In this study we will investigate the overlap between EQ-5D-5L using psychometric methods, develop a descriptive system based on both instruments, and then pilot a DCE approach to valuing that descriptive system. We will use the approach to develop a value set that is based on combining items from the ASCOT and EQ-5D-5L. | Rosalie Viney | Descriptive Systems, Valuation | 55540 | Ongoing | 2020 | 2024 |
| 133-RA | Assessment and comparison of the feasibility and measurement properties of the EQ-5D-Y-3L and EQ-5D-Y-5L self-complete versions in the Tigrinya language and comparison with the CHU-9D | The EuroQol Group has recently produced a new version of the EQ-5D-Y (the EQ-5D-Y-5L), which has increased the number of levels of severity in each dimension to five from the original three. Before being made widely available, the feasibility, distributional and measurement properties of the EQ-5D-Y-5L need to be assessed and compared with the standard EQ-5D-Y-3L. It is also of interest to compare their performance with that of other generic multi-attribute utility instruments (MAUI) for use in pediatric populations. The objectives of this study are to assess and compare the feasibility, distributional characteristics, discriminatory power, and measurement properties of the Tigrinya versions of the EQ-5D-Y-3L and EQ-5D-Y-5L in healthy children and children with a range of health conditions, and to compare the results with those of the CHU-9D. The EQ-5D-Y-3L and EQ-5D-Y-5L will have been previously adapted into Tigrinya (a semitic language spoken by approximately 9 million native speakers, primarily in Ethiopia and Eritrea) following the EuroQol Version Management Committee guidelines. Their feasibility, distributional properties, discriminatory power, and known groups’ and convergent validity with other, attribute-specific scales will be tested in a cross-sectional study in paediatric patients aged 8–15 years with any of 8 health conditions (n≈520) and a control group of 'healthy' schoolchildren (n≈100). Test-retest reliability and responsiveness will be assessed in a sub-group of the initial sample who will participate in a second visit 1–3 months from baseline. The Tigrinya version of the CHU-9D will be included alongside the two versions of EQ-5D-Y and the results compared. | Abraham Gebregziabiher Welie | Youth | 72199 | Ongoing | 2022 | 2025 |
| 83-VS | An Australian Value Set for the EQ-5D-Y | Objectives Australia has a well-established HTA process and there is widespread use of generic instruments in evidence presented to it. However, there are gaps in tools and evidence available to support evaluation of paediatric health. The aim of this paper is to produce an Australian EQ-5D-Y-3L value set. Methods The methods follow the international EQ-5D-Y-3L (Y-3L) valuation protocol, but with an expanded design. Composite Time Trade Off (cTTO) and Discrete Choice Experiment (DCE) data were collected from two independent samples. In total, 52 Y-3L health states, assigned into four blocks of 14 health states each containing health state 33333, were valued using cTTO. CTTO data were collected via videoconferencing interview and each respondent valued 14 health states. Mean observed cTTO values were adjusted for censoring at -1 using a Tobit model. For the DCE component, 150 latent scale DCE choice pairs were collected via an online survey with each participants completing 15 pairs. DCE data were modelled using a garbage class mixed logit model. Two approaches to anchor DCE data to the QALY scale were explored: anchoring using the mean observed cTTO value for the worst health state (33333); mapping DCE data onto the mean observed cTTO values using all 52 health states. Two evaluation criteria were used to select the final value set: (1) coefficient significance and logical consistency; (2) prediction accuracy of the mean observed cTTO values. Results In total, 268 individuals participated in the cTTO interviewers, and 1002 completed the DCE survey. The linear mapping without intercept performed the best and was selected as the final value set. Health state values ranged between 0.142 to 1. The relative importance of domains by level 3 coefficients was as follows (ordered from most to least important): pain/discomfort, feeling worried, sad or unhappy, usual activities, looking after myself and mobility. Conclusion This study reports an Australian value set for the EQ-5D-Y-3L, which enables the calculation of Quality Adjusted Life Years (QALYs) for use in the economic evaluation of paediatric interventions and can support evidence development and decision making. | Richard Norman | Valuation, Youth | 135918 | Completed | 2020 | 2024 |
| 151-RA | Does rapid fluctuation of health over time affect the actual time span that is used by trauma patients when thinking of ‘your health today’? | Background: The standard reference period of the EQ-5D is ‘your health today’. However, the ‘true’ reference period that is used by the respondent when filling out the EQ-5D may be shorter or longer than ‘your health today’, or may focus on specific (health) events in that time period. Patients with health conditions with rapid fluctuations of health over time as measured by other instruments or through observation, such as injuries, may use another reference period than what is asked for ('today'). Repeated measurements of the EQ-5D and cognitive debriefing items in a sample of trauma patients can give more insight into the reference period that is used, and the relation between the fluctuation pattern and the actual reference period. We will investigate these heuristic rules and the impact - if any - of specific factors, e.g. recovery patterns, and non-specific factors like age, sex and level of education. Study aims: Determine the actual reference period that was used when thinking of 'your health today' and the heuristic rule that was used to combine the full experience of that actual reference period in one overall 'signifying' number or level. Methods: The sample consist of trauma patients who filled out the EQ-5D-3L and cognitive debriefing questions at repeated measurements. Uni- and multivariate regression analysis will be used to determine if recovery pattern and patient characteristics are associated with the actual reference period and the heuristic rule. Output: A scientific paper that describes the results of this study. | Juanita Haagsma | Descriptive Systems | 13400 | Ongoing | 2020 | 2024 |
| 79-RA | The psychometric properties, feasibility and usefulness of the EQ-5D-5L in Ethiopian stroke patients- A mixed-methods longitudinal study | Stroke is the second leading cause of death globally and significantly impacts the health-related quality of life (HRQoL) of survivor. While there are some established longitudinal studies of stroke patients internationally, little is known about health-related quality of life (HRQoL) outcomes following the first-ever stroke in Ethiopia (classified as a low-income country), where the population exceeds 110 million people. Therefore, this study aimed: 1) to assess the feasibility of administering the EQ-5D-5L to patients and their proxy respondents during hospital admission and again 3 and 6 months following an acute onset illness (first-ever stroke); 2) to examine further the reliability and validity of the EQ-5D-5L applied to stroke patients and their proxy; 3) to examine patient-proxy agreement on the domains and summary scores of the EQ-5D-5L; and 4) to qualitatively investigate, within patient-proxy dyads, patient and proxy perspectives of the reasons for any differences in HRQoL reporting on the descriptive profile between patients and their proxies. At baseline, 200 patient-proxy dyads were recruited between November 2021 and November 2022, and in the second and third visits, 152 (76%) and 133 (66.5%) patient-proxy dyads were included. At baseline, hospital admitted patients with ischemic stroke (n=128; 64%), hemorrhagic stroke (n=66; 33%), and cardioembolic stroke (n=6; 3%) were recruited. The Amharic version of self-completed and interviewer-administered EQ-5D-5L were completed by the stroke patients and the proxy self-complete and interviewer administered versions were completed by their proxy respondents. At all three time points participants (both patients and proxies) preferred the interviewer-administered version of the tool. Demographic and clinical data were collected at baseline, and the degree of disability or dependence in the daily activities of stroke patients was measured using the Modified Rankin Scale (mRs) at baseline and follow up visits. A qualitative interview was done with 15 dyads to investigate potential explanations for the observed slight discrepancy in EQ-5D profiles between patients and proxies at three time points of an interview. The EQ-5D-5L response distribution demonstrated that higher proportion of patients and proxies reported problems on usual activities (UA) and mobility (MO) dimensions while fewer problems were reported on selfcare, anxiety/depression (A/D) and pain/discomfort (P/D) dimension regardless of the visit period. The proportion of reported no problems (level 1)/problems (level 2 to 5) for each dimension of EQ-5D-5L were compared across the interview period between patient and proxy using the chi-square test. No significant difference in reported no problems/problems proportion was observed across all dimensions. Weighted Cohen’s Kappa statistics were computed to compare the agreement between patient and proxy rating for each dimension of EQ-5D-5L at baseline and follow up visits. At baseline, a lower agreement was observed for P/D (0.32) and A/D (0.43) dimensions, while a higher agreement was observed for MO and selfcare (SC) dimensions. In all dimensions, an improved agreement was observed in visits two and three compared to the baseline report. Differences between patient and proxy utility scores (based on EQ-5D index and EQ VAS) were assessed with paired t-tests at baseline and follow up visits. No significant difference in mean EQ-5D index and EQ VAS was observed between patient and proxy at baseline and visit two; however, at the third visit a significant difference was observed in EQ-5D index or EQ-VAS score with t (131) = -0.88, p = .01 and t (126) = -2.68, p = .008 respectively. EQ-5D index reported by a patient at baseline shows a strong correlation (r=0.88) with the EQ-5D index reported by a caregiver at baseline; however, moderate correlation was observed with EQ VAS score (r=0.7 for patients and r=0.66 for caregiver). The EQ VAS and EQ-5D index showed a moderate to strong correlation with the mRs score. The mean utility based on the type of stroke was reported in which higher mean utility was observed in cardioembolic stroke than in ischemic and hemorrhagic stroke; however, the difference was not significant based on the type of stroke. A significant difference in mean utility was observed among clients with different levels of stroke disability based on the mRs score (good known group validity). Overall, there was no significant difference between the patient and proxy-reported EQ-5D-5L profiles or utility values at admission. There was strong agreement/correlation in reported values in admission and follow up visits. | Yared Belete Belay | Descriptive Systems | 24000 | Completed | 2020 | 2021 |
| 145-RA | Patient Reported Outcomes in Quality of Care. A systematic review with specific attention to barriers and opportunities for EQ-5D in orthopedic surgery | **Background** The use of the EQ-5D in recent years has been broadened to its use as a PROM. These broader applications include: assessment of quality of care (mainly in clinical registries), large scale (sub)population health assessment (such as the recent covid-studies), and use in clinical decision making or provider's choices, as exemplified by Bansback (orthopedic surgery choices), and Parkin & Devlin’s work on NHS data. **Aims** The aim of the study is to investigate the utilization of the EQ-5D as a PROM in quality of care applications, notably in orthopedic surgery, elaborating on a pre-existing generic study into empirical evidence on PROMs in general. Barriers and opportunities will be investigated, including different medical cultures across the globe. **Methods** A systematic review will be conducted, combined with interviewing/surveying specific stakeholders (a.o. OECD, and EQ-Network; orthopedic registry stakeholders in particular). The systematic review will start from preparatory work from a Master thesis of the applicant. Part of the work expediates on materials from the September 2019 EQ Workshop in Brussels. **Deliverables** * List of strengths and weaknesses of the EQ-5D (to improve; maybe suggestions for data processing [casemix control, dashboards], for opportunities to apply so-called 'deep dive' technology or insert bolt-ons, adaptation of reference time [now: today], desired supportive information) in this context; in particular to research/network groups like Canada, Sweden, UK. * Input for a EQ-5D dissemination strategy on PROM use * Input for a.o. the OECD platform, and national specialist's platform (like FMS Netherlands) | Joshua Bonsel | Populations and Health Systems | 14680 | Completed | 2021 | 2024 |
| 124-VS | **Valuing the EQ-5D-Y-3L in Belgium using the new protocol** | In Belgium, health economic valuations are a mandatory part of the Health technology appraisal (HTA) process, both for adult and for paediatric indications. The guidelines for this process were developed by the Belgian Health Care Knowledge Centre (KCE). To date, only a VAS-based 3-level valuation set is available for adults in Belgium; no value sets for any HRQoL instruments for children exist in Belgium. The KCE encourages a youth valuation study and will incorporate its results into the HTA guidelines. Recently, a new youth valuation protocol has been proposed for developing country-specific EQ-5D-Y value sets. The primary aim of this study is to conduct a EQ-5D-Y valuation study for Belgium using this new protocol, including an online panel to collect DCE data (n=1,000) and face-to-face TTO interviews (n=200) for anchoring the DCE data. This study also includes a methodological arm to assess whether the valuation differs between children and adolescents. For this second study aim, new respondents will be recruited to value 14 DCE pairs: 7 from a child and 7 from an adolescent perspective. A new, efficient design will be developed and we calculated that 500 respondents would be sufficient to estimate a main-effects model and to test for the impact of perspective on the value set. This double-pronged project will fill in knowledge gaps in youth valuation, firstly by estimating a EQ-5D-Y value set reflecting the health preferences of the Belgian general population. And secondly, by furthering our understanding of a possible age-related effect within this paediatric population. | Dewilde Sarah | Valuation, Youth | 138130 | Ongoing | 2020 | 2024 |
| 92-2020RA | Investigating the effect of interaction terms in modelling EQ-5D value set and its impact on sample size requirements using three VAS saturated data | A recent report filed by the EEPRU raised several issues regarding the design, data quality and modelling of the UK EQ-5D-5L study. Among all the issues raised, the most prominent one is the directly valued TTO states only covered less than 3% of all possible 3,125 health states despite the fact that other instruments used even smaller proportions of states to develop their value sets. Historically, the valuation study of EQ-5D has favoured the design of a small set of health states with sufficient responses per health state, e.g. in the case of current EQ-VT design, 80 unique states with 100 responses per health state (excluding the 5 mildest states and state 55555). A main consideration of this design choice is that with 100 responses per health state, the observed means are robust. However, a limitation of this design is the small coverage limited the possibility of identifying higher order interaction term as questioned by the EEPRU report. In this study, we aim to explore the interaction effects in three existing EQ-5D VAS saturated dataset (one 5L and two 3L). We will 1) investigate models with interaction terms in the full data of 3 saturated EQ-5D respectively; 2) investigate the possible consequences for sample size if we want to use the interaction model, i.e., we will gradually lower the number responses/states to the point where the interaction model identified in the full data can be constructed while the number of responses/states are minimal. | Zhihao Yang | Valuation | 30580 | Ongoing | 2020 | 2024 |
| 89-RA | Investigating the aspects of HRQoL covered by pain/discomfort and the added value of the psoriasis bolt-ons (EQ-PSO) among patients suffering from skin diseases (Revised). | Introduction: Dermatologic conditions do not constitute a direct threat to life, but their chronic and incurable character has a negative impact on the health related quality of life (HRQoL). In the EQ-5D, physical discomfort is captured by the pain/discomfort item, while pain is clearly a very important aspect of physical discomfort, other aspects such as itching, skin irritation and the indirect impact of this on skin appearance, self-confidence, and relationship difficulties are not explicitly mentioned. The objective of this study is to investigate how well aspects of HRQoL are captured by the EQ-5D descriptive system, and more specifically by the pain-discomfort item, and the additional advantage of using the psoriasis bolt-ons (EQ-PSO questionare) in people with skin diseases. Method: First in-depth qualitative interview with 30 patients will be undertaken to investigate how well the health aspects important for people with skin diseases (psoriasis) are captured by the EQ-5D descriptive system, more specifically by the pain-discomfort item and the additional advantage of using EQ-PSO questionare. Both EQ-5D-5L and EQ-PSO questionnaire will be administered to participants. The qualitative interviews will be recorded using an encrypted audio recording device, transcribed and translated. For the analysis, statements will be grouped into themes. Subsequently, thematic content analysis will be used to investigate further issues. Findings from the interviews will be discussed in FGDs with participants who did the interview to make sure their concern is captured, to feed off each other’s ideas, to get useful information that individual interviews does not provide. | Abraham Gebregziabiher | Descriptive Systems | 23960 | Ongoing | 2022 | 2024 |
| 85-RA | Comparing the psychometric properties of EQ-5D-Y-5L and EQ-5D-Y-3L in children with osteogenesis imperfecta in China | The objective of this study was to evaluate and compare the psychometric properties of the EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU-9D with the “standard” instrument, PedsQL, in a sample of children and adolescents with Osteogenesis Imperfecta (OI). A web-based cross-sectional survey of pediatric OI patients was conducted to collect data. The EQ-5D-Y-3L, EQ-5D-Y-5L, CHU-9D, and PedsQL were used to assess the health-related quality of life of the participants. Construct validity, including convergent and divergent validity, known-group validity, and test-retest reliability, were examined to confirm the psychometric properties of the instruments. A total of 157 children and adolescents with OI participated in the study. Few samples reported full health status. A strong ceiling effect was observed for all EQ-5D-Y and most CHU-9D dimensions. Both EQ-5D-Y and CHU-9D showed statistically significant correlations with the corresponding PedsQL subscales. A strong correlation was also identified between EQ-5D-Y-3L and EQ-5D-Y-5L. The test-retest reliability for the EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU-9D was acceptable. The EQ-5D-Y instruments showed a better known-group validity than CHU-9D in differentiating patients in different risk groups. The results show that the EQ-5D-Y instruments and CHU-9D are reliable and valid and that the EQ-5D-Y-3L performed slightly better than EQ-5D-Y-5L regarding convergent validity and its ability to discriminate. | Richard Huan XU | Youth | 16295 | Completed | 2020 | 2022 |
| 119-RA | A qualitative study on the content validity of the EQ-5D-5L and EQ-PSO bolt-on in patients with psoriasis in Hungary | Objectives: A number of bolt-ons have been proposed for the EQ-5D, including two psoriasis specific bolt-ons, skin irritation and self-confidence. The study investigates and compares the relevance and comprehensiveness of these psoriasis specific bolts and the EQ-5D-5L and explores the potential conceptual overlaps between the existing five dimensions and the two bolt-ons. Methods: Psoriasis patients were purposively sampled according to age and gender. Semi-structured interviews, where participants were asked to complete the EQ-5D-5L, the EQ VAS and the bolt-ons while thinking aloud, were conducted. Probes were used to investigate the thought processes of patients regarding the dimensions, wording, recall period and relevant concepts not captured by the EQ-5D-5L and bolt-ons. Data were analysed thematically. A focus group was used to confirm the findings. Results: Overall, 16 patients completed the interviews. Sixteen and fifteen patients considered skin irritation and self-confidence relevant areas to describe psoriasis problems. Three patients considered itching a form of discomfort, and thus, pointed out a potential overlap between pain/discomfort and skin irritation. Twelve patients reported overall 10 general health- or psoriasis-related concepts that are not captured by the EQ-5D-5L, including itching, social relationships and sex life. Eleven patients reported that the recall period of the EQ-5D-5L might be subject to bias because of the daily or within-day fluctuations of their symptoms. Conclusions: The skin irritation and self-confidence bolt-ons are particularly pertinent and contribute to improve content validity of the EQ-5D-5L in patients with psoriasis. There is only a minor conceptual overlap between the pain/discomfort and skin irritation dimensions. | Fanni Rencz | Descriptive Systems | 24990 | Completed | 2020 | 2021 |
| 127-RA | Developing Scoring Methods for the 25-item EQALY Instrument | The main aim of this project was to develop a non-preference scoring system for the EQ-HWB and EQ-HWB-S using exploratory item response theory, confirmatory factor analysis and confirmatory item response theory. Datasets from the EQ-HWB psychometric studies conducted in United States, Australia, and United Kingdom were used. Developing a scoring system is especially important for the 25-item EQ-HWB which is not easily scored using standard preference elicitation techniques. We have been able to prove the validity of using a level sum score (LSS) for a single score as well as two subscales of the EQ-HWB-S. Although we were able to rule out certain models for the EQ-HWB, such as modelling the positive and negative items separately, , the original theoretical structure of the items and the 1- and 2-factor model for the EQ-HWB, it is less clear which of the other investigated models is the most suited for scoring. It was determined that a 3- and a 6-factor model were the most recommended. However, due to the limitations of the data used for these analyses, it was determined that we cannot firmly recommend a scoring structure for the EQ-HWB until the 3- and 6-factor models can be tested using data based on the current version of the EQ-HWB. | You-Shan Feng | Descriptive Systems, EQ-HWB | 81430 | Completed | 2020 | 2021 |
| 84-RA | Assessing the impact of COVID-19 on population health using the longitudinal panel surveys in the US, Sweden and Norway | 1. The EQ-5D-5L is sensitive to capture the HRQoL changes over time in measuring the impact of an unprecedented infectious disease pandemic with a prolonged duration (2 years to date and on-going) 2. The EQ-5D-5L was able to differentiate the HRQoL differences between groups, for example, young adults vs. older adults, thus rendering important public health policy recommendations on the needed attention for the younger population in the US. 3. EQ-5D-5L utility values enabled the estiamtion of over 1 million lives lost due to COVID-19's negative impact on the youth population in the US. Public health policy should consider the mental health impact of the policy on the youth popualtion 4. It is important to understand people's health behavior under uncertainty, including people's perceptions and acceptability of mandate interventions such as vaccination | Ning Yan Gu | Populations and Health Systems | 24480 | Completed | 2020 | 2020 |
| 74-RA | General public EQ-5D measurement before and during general Covid-19 quarantine in Spain | Abstract Please provide a short summary of your completed work. This information will be included in the EuroQol database on funded research and may also be presented on the research section of the EuroQol website Objectives The COVID-19 pandemic forced many countries to implement confinement measures to limit the spread of the virus. Measuring the loss in terms of quality-adjusted life-years (QALYs) may provide a commensurable basis for comparison of the impact of COVID-19 and related factors to health and well-being. The aim of this research was to explore the impact of the first 28 days of COVID-19 related confinement measures on the health-related quality of life (HRQoL) of the Spanish general population. Methods We implemented a quota-based online survey to collect age, gender, region and EQ-5D-5L data. The data collection was conducted in four waves with 500 general population respondents each: one conducted shortly before the lockdown and 3 follow-ups conducted every consecutive week. Each wave of sampling was independent, and any overlap of respondents between waves would be coincidental. EQ-5D-5L responses were described using the proportion of respondents reporting each level of functioning on each dimension over the follow-up period. Utility values were retrieved from the Spanish EQ-5D-5L value set. For comparison with pre-covid responses, data from the 2011-2012 National Health Survey (NHS) was taken as reference. We calculated the QALY loss over the 21 days of the follow-up period as the difference between utility values from the reference sample and the corresponding values for the 4 waves of our data collection. QALY loss for the entire duration of the lockdown was estimated taking the mean QALY-loss for the 4 waves. For comparison, we estimated the total QALY-loss associated with premature deaths due to COVID-19 in Spain until the end of the study, assuming that they would otherwise have lived to the estimated life expectancy for their corresponding age/sex group, with values corresponding to their respective mean utilities based on the reference sample. Results Comparing the baseline results to the follow-up results shows little change with respect to the distributions of reported problems in any of the 5 dimensions during the follow-up period. However, results for anxiety/depression show a 32% increase in the proportion of reported problems (most prominently for level 2, from 9% to 35%). The Spanish population was estimated to accrue a total of 1,994,216 QALYs over the study period. Based on the corresponding reference data, the population should have accrued 2,054,737 QALYs, leading to a loss for the general Spanish population of 60,520 QALYs over 21 days. If the situation observed were to continue for the entire lockdown, the corresponding loss would be 285.310 QALYs. For comparison, the estimated lifetime loss associated with the 15,956 individuals who had died from COVID-19 by the end of the study would have tallied 146,584 QALYs. Conclusions A population under a lockdown situation reported higher rates of anxiety/depression problems than in a regular situation. On a country-wide scope, this may lead to a substantial loss in terms of QALYs, especially over longer periods of time. | Juan Manuel Ramos-Goñi | Populations and Health Systems | 16920 | Completed | 2020 | 2024 |
| 2016030 | A PROMs based patient decision aid for patients considering total knee arthroplasty: development and a pilot randomized controlled trial. | The proposition is that patients do not have realistic expectations about the outcomes of total knee arthroplasty (TKA)and might change their decision aboutsurgery if they were better informed prior to the surgeon consult. Unrealistic expectations can lead to some patients having surgery that they later regret. We propose using routinely-collected Patient Reported Outcome Measures (PROMs),including the EQ-5D,in patients who have previously considered TKA surgery. We believe this information can better set patients’ expectations, leading to improved quality decisionsand more appropriate surgeries. For example, since patientswith less severe pain systematically overestimate the amount they would benefit from surgery, we hypothesize the decision aids would lead to some patients delayingsurgery.We will test this hypothesis in two phases: 1) Finalizethe development of a PROMs decision aid for patients considering TKA (originally developed with funding from EuroQol)to ensure it is acceptable and understandable to patients and providersandcollect PROMs in patients choosing non surgical management;and 2) Conduct a pilot randomized trial to evaluate the feasbility and potential effectiveness(based on decision quality) of the decision aidvs usual carein 280 patients considering TKA. Ultimately, the pilot findings will inform a future multicentre implementation trial which would evaluate the impact of the decision aid being used province-wide in Alberta. This research could have importanthealth policy consequences, as health care systems continue to struggle with long waiting timesfor TKA.With the trend for more and younger patients with less severe pain and better function demanding surgery, it is critical to identify appropriate surgical candidates. If successful, our studywould demonstrate the role of the EQ-5D in helping guide patient and physician decisions. | Nick Bansback | Others | 210714 | Completed | 2015 | 2017 |
| 20190510 | Design and Analysis Considerations when using the EQ-5D alongside clinical trials or observational studies for economic evaluation: PhD studentship and development of tools for analysts and researchers | The EQ-5D instrument is widely used alongside randomized controlled trials and as part of observational studies to inform the development of cost effectiveness models. Perhaps surprisingly very little guidance has emerged on design and analysis considerations for analysts who are interested in employing the EQ-5D instrument as part of their study. Trial sponsors commonly analyse EQ-5D by trial arm and report that there is no difference in HRQL (sometimes in contrast to findings for other PROs). But the structure of economic models is often described in terms of discrete disease states over a patients’ lifetime. Health economic modellers have long recognized the limitations of standard approaches to trial data analysis and have instead employed regression modellingto understand the impact of events and health states on utility. Prominent examples include the analysis of the UKPDS trial1; work in COPD 2; oncology3, and cardiovascular disease4. We believe a lot more work can be usefully conducted to provide guidance on a wide range of issues including modelling approaches, handling patient drop out and providing guidance regarding the optimal design of studies designed to measure the impact of events at random points in time. This application is seeking funding for a studentship at the London School of Hygiene & Tropical Medicine to explore this work using available datasets. | Andrew Loyd | Populations and Health Systems | 156995 | Ongoing | 2021 | 2023 |
| 60-VS | Generating an EQ-5D-3L value set for the Hashemite kingdom of Jordan | PCR174 VALUATION OF THE EQ-5D-3L IN JORDAN Al Rabayah AA,1 Purba F,2 Rencz F,3 Roudijk B,4 Jaddoua S,5 Siebert U6 1King Hussein Cancer Center, UMIT - University for Health Sciences, Medical Informatics and Technology, Institute of Public Health, Medical Decision Making and Health Technology Assessment, Hall in Tirol, Austria, Hall in Tirol, Austria, 2Faculty of Psychology, Padjadjaran University, West Java, Indonesia, 3Department of Health Policy, Corvinus University of Budapest, Budapest, Hungary, 4EuroQol Research Foundation, Rotterdam, ZH, Netherlands, 5King Hussein Cancer Center, Amman, Jordan, 6UMIT - University for Health Sciences, Medical Informatics and Technology, Hall i.T., Austria. ONCOTYROL - Center for Personalized Cancer Medicine, Innsbruck, Austria. Harvard T.H. Chan School of Public Health and Harvard Medical School, Boston, MA, USA Objectives: Cost-utility analysis is an important tool for health technology assessment and decision-making about health technologies in Jordan, however no national value set is available for any preference-accompanied health utility measure. To develop a value set for EQ-5D-3L based on the preferences of the Jordanian population. Methods: A representative sample of the Jordanian general population was obtained in 2021 through stratified quota sampling involving age, gender and region. Participants aged above 18 years, were interviewed by online videoconferencing using the EuroQol Valuation Tech- nology web based LimeSurvey. Four trained interviewers completed data collection. The data were closely monitored through the QC protocol of Euro- QoL. Participants completed 10 composite time trade-off (cTTO) and 10 discrete choice experiments (DCE) tasks. In addition, participants completed the feed- back module. Values for the EQ-5D-3L health states were estimated using regression modeling. The cTTO and DCE data were analyzed using linear and logistic regression modeling, and hybrid models combining the DCE and cTTO data. Results: A total of 301 participants with complete data were included in the analysis. Only one interview was flagged. All regression models showed both logical consistency and significance with respect to the parameter estimates. The hybrid model corrected for heteroskedasticity was selected as it included data from both the cTTO and the DCE tasks which provided a comprehensive value set. Utility decrements due to mobility had the highest weight followed by anxiety and depression. The lowest weight was assigned to usual activities. Conclusions: This study provides values for EQ-5D-3L health states for the Jordanian population. This value set can be used in health technology assessments for health policy planning by the Jordanian health sector’s decision makers. | Abeer Al Rabayah | Valuation | 13940 | Completed | 2020 | 2022 |
| 59-VS | Valuing Health-State: An EQ-5D-5L Value Set for Uzbekistan population | Introduction: Uzbekistan has limited healthcare budgets and struggles to prioritize investments in health technologies. With a growing effort to improve population health in the context of limited resources, there is a growing demand for Health Technology Assessment (HTA). However, one of the main challenges are lack of local health state value set data of their population. Country-wide studies of health related quality of life can serve as measures of population health and inform economic evaluation. Objective: To develop a community derived preference set for the Uzbekistan population for EQ-5D-5L health states. Method: A population-based, interviewer-administered, face-to-face, cross-sectional survey with assistance of EuroQol PowerPoint Based Valuation Technology (EQ-PVT) research design and data collection process will follow a research protocol developed by the EuroQol Research foundation. The data collection will be conducted in fife regions of Uzbekistan from Aug 24/2020 to Aug 23/2021. A two-stage quota sampling strategy will be employed. A sample of 1000 participants matched with the national proportions of gender and age will be made from five regions. A non-probability sampling method will be used to recruit community-dwelling residents from five regions of Uzbekistan. Recruiting will be conducted in publicly accessible places such as streets, urban and rural community dwellings and university campuses. Descriptive statistics will be used to characterize the included and excluded samples. To maximize the use of available data, a Hybrid Modelling approach data set will be generated using both c-TTO and DCE data. The modelling will be used to create the value set. | Sandjar Djalalov | Valuation | 57200 | Ongoing | 2020 | 2024 |
| 20200020 | Establishment of a UK EuroQol Group and initial 1 day meeting | We held a one-day meeting in the UK for researchers with an interest in the development and application of the EQ-5D and other EuroQol measures. The meeting was designed to be researcher-led and aimed at UK and Ireland based researchers primarily. The meeting discussed recent developments in EuroQol instruments (EQ-HWB, the latest UK valuation study, use of large EQ-5D datasets in England, changes in health state preferences over time and recent work on personal utility functions). The meeting was mainly attended by non-EuroQol members, including early career researchers and students. | Louise Longworth | Education and Outreach | 18180 | Completed | 2020 | 2024 |
| 20200010 | Describing the Worse than Dead in Youth Valuation | PurposeTrading life years for children is difficult, not only in the context of Time Trade Off valuation task but also in a real-life situation, where adults have to take medical decision for children which involve a trade-off between mortality and changes in quality of life. This difficult situation captured in the preliminary result of the Indonesian EQ-5D Youth valuation study using cTTO. People tend to be reluctant to give up life years for children, indicated by few worse than dead responses (only 10% from total observations), and wide differences of mean and SD for the most severe state compare to the other bad health states. Due to the limited number of severe states in Indonesian EQ-5D Youth valuation study, firm conclusion of adult’s reluctance to trade-off in trading life years for children could not be well-established. Understanding the reasoning behind adult’s decision in trading life years for children will lead to improvement in the youth valuation study design in the near future. Therefore, the aims of this study are: a) to reinforce the finding from Indonesian EQ-5D-Y valuation study by collecting additional data using cTTO arranged dominantly with severe health states and b) explore respondent’s thought process when trading life years for children (or being reluctant), particularly in the worse-than-dead values. MethodsFifty respondents with an age above 17years old in rural and urban area at Jakarta and Bandung (Indonesia) will be invited to participate in this study. Interview will consist of standard cTTO interview, then followed by semi-structured qualitative interview. To make it comparable with the previous study, the cTTO will consist of 12 health states whereas half of them will have misery index greater than 12. This design is chosen to provoke a higher number of worse-than-dead responses so that respondent’s thought process behind worse-than-dead responses could be betterunderstood. The qualitative interview will be focus in the background thinking of the worse-than-dead responses. Quantitative data from cTTO interview will be analyse using STATA and qualitative data will be analyse using content and thematic analysis. | Titi Fitriani | Valuation, Youth | 13366 | Ongoing | 2020 | 2024 |
| 20191070 | A comparison of methods to evaluate DCE response quality | Objectives: This study aimed to identify the most commonly used internal validity tests in the discrete choice experiment (DCE) literature and establish their sensitivity and specificity. Methods: A structured literature review of recent DCE articles (2018-2020Q1) published in the health, marketing, transport economics, and environmental science literature was used to identify commonly used internal validity tests. The 2 most frequently used internal validity tests were incorporated in 4 new data collections. Respondent preferences in each application were summarized using a mixed logit model, which served as the benchmark for the subsequent sensitivity and specificity calculations. The performance of the internal validity tests was also compared with that of the root likelihood (RLH) test, which is a likelihood-based statistical validity test that is commonly used in marketing applications. Results: Dominant and repeated choice tasks were most commonly included in health-related DCE designs. Based on 4 applications, their specificity and sensitivity depend on the type of incorrect response pattern to be detected and on design characteristics such as the number of choice options per choice task and the number of internal validity tests as included in the experimental design. In all but one scenario, the performance of the dominant and repeated choice tasks was considerably worse than that of the RLH test. Conclusions: Dominant and repeated choice tasks are unreliable screening tests and costly in terms of statistical power. The RLH test, which is a statistical test that does not require additional choice tasks to be included in the DCE design, provides a more reliable alternative. | Marcel Jonker | Valuation | 42840 | Completed | 2020 | 2020 |
| 20191000 | Testing the appropriateness of EQ-5D in a socioeconomically disadvantaged population | Health inequality has been prominent in the policy agenda. Apart from using objective health indicators such as mortality and morbidity to measure health inequalities, with an increasing awareness with people’s feeling and satisfaction about their own health status,health-related quality of life (HRQoL)has become an essential part in health inequality measurement nowadays. Only with a HRQoL measure that is valid and reliable across populations, can the extent and nature of health inequality in terms of HRQoL be well captured. However, HRQoL measures, such as EQ-5D,are less likely to be validated with people who are socioeconomically disadvantaged, for example, those people living in underdeveloped rural areas or with lower education attainment.While, in fact, it has already been reported that thosesocioeconomically disadvantagedpeople in China had difficulty in understanding the questionnaire.With limited research investigated the understandings of HRQoL andtheacceptability of HRQoLmeasures among rural populations in underdeveloped areas, this study proposes to explore how they may understand health as described by EQ-5D. If potential barriers for them in using EQ-5D to reflect their actual health status are identified, it will indicate how we can promote an appropriate use of EQ-5D in this population. | Zhuxin Mao | Descriptive Systems | 12550 | Completed | 2020 | 2020 |
| 20190980 | Exploring experiences among adults and adolescents of health state valuation for the EQ-5D-Y-3L - a qualitative study | Purpose: There is an increasing interest for using qualitative methods to investigate peoples’ cognitive process when asked to value health states. A standardised valuation protocol for the EQ-5D-Y-3L instrument was recently developed. Little is known regarding how people think, reason, and feel when asked to value health states for children. The aim was to explore how adolescents and adults perceive the task of valuing children’s health states using the standardised valuation protocol. Methods: This was a qualitative study where adults (n=10) and adolescents (n=10) from the general population participated in individual video-interviews. Initially, participants reported their own health with the EQ-5D-3L instrument. Then they were asked to complete several valuations tasks for a 10-year-old child according to the standardised valuation protocol, followed by a semi-structured interview with open-ended questions to further explore participants’ perceptions. A qualitative content analysis was performed. Results: The two main categories that emerged from the data were ‘Thoughts and feelings when valuing children’s health states’ and ‘Strategies when valuing children’s health states’. Participants expressed feeling doubt, awfulness and being reluctant to trade off life years, and questioned who has the right to value health states for children. Experience and point of view were strategies participants used to complete the valuation tasks. Conclusion: The findings from the present study can contribute to the understanding and interpretation of quantitative results where the standardised valuation protocol has been used to derive values for the EQ-5D-Y-3L. Furthermore, results of the study support the feasibility of including adolescents in valuation studies. Key words: Adolescents; Discrete choice experiment; EQ-5D-Y-3L; General population; Qualitative interviews; Time trade-off | Mimmi Åström | Youth | 17900 | Completed | 2020 | 2021 |
| 20191040 | Learning from 5L valuation studies : Investigating differences in preference structures | 5L value sets have now been published for several countriesutilising the standardEQ-VT system. The results for the most part focus on the data quality and the technical robustness of estimation models and comparison with other studies is understandably limited.A paper presented at the Brussels Plenary in September reported on results obtained from an (self-funded)review of 15published valuation studies.Thatoriginal study identified 3 different graphical patterns of value decrementwith distinctive differences apparent in value sets originating in Asia-Pacific Region when compared with thosefrom Europe/ Canada.An obviouslimitationin workingfrom published material is that results lack uniformity across studies. Equally, the analytic processes employedare likely to vary across studies and the choiceof model finally arrived upon will most likely reflect its acceptability to the domestic researchteam. In order to ensure a standardised like-for-like comparison access to the primary data is required. This study is based on that requirement.EQ-VT utilises 2 preference elicitation procedures, each generating a set of values. Evidence for their commensurability is limited. DCE generates unbounded latent scale values whereas TTO generates interval scale values with an intrinsicupperbound of1.Working with the primary data will enable us to address the measurement propertiesof the two sets of values within each study.Graphical and statistical methods will be used to examine the comparability of DCE and TTO preference structures. | Paul Kind | Valuation | 20000 | Completed | 2019 | 2020 |
| 20180301 | Extension to 20180300: What aspects of quality of life are important to people with experience of cognitive or visual impairment? A qualitative investigation | There is a series of ongoing work on the development of descriptors for bolt-ons to the EQ-5D, driven by the need to capture domain-specific Qol not measured by the EQ-5D. One such project is currently underway exploring the development of bolt-ons for cognition and vision. As part of this project substantive qualitative data collection with individuals and carers experiencing these health conditions has taken place. The pre-planned analysis has revealed that a broad range of quality of life domains beyond those with a vision and cognition focus, and beyond the domains currently covered by the EQ-5D descriptive system, are important to these people. As such, we seek additional funding to explore these domains using a detailed qualitative thematic analysis, which is important to ensure content and construct validity of further quantitative work. The outcomes of this work will lead to a robust and comprehensive list of quality of life domains of importance for people with cognition and vision impairments. Moreover, it will provide a comparison of this list with existing measure of quality of life measures that cover the domains of cognition and vision (e.g. Adults Social Care Outcomes Toolkit (ASCOT)). Therefore, the project will deliver evidence about the suitability of the EQ-5D in these health conditions and inform its future development. This will yield important insights for future bolt-on development work as well as research seeking to develop broader quality of life descriptive systems, such as the E-QALY. | Katie Page | Descriptive Systems | 14800 | Completed | 2020 | 2022 |
| 20191020 | Estimating an EQ-5D-Y value set for China | Introduction: In 2020, the EuroQol Group published an international protocol to estimate EQ-5D-Y value set. In the protocol, DCE data is used as the primary preference data to model the relative importance of five health dimensions and cTTO data is used to anchor the DCE modelling results onto the QALY scale. This study aims to estimate an EQ-5D-Y value set for China following this protocol. To better understand the role of cTTO data in estimating EQ-5D-Y value set, we adopted a larger cTTO design. We also explored the possibility of estiamting a cTTO alone value set and assessed the feasibilty of completing EQ-5D-Y cTTO task in Chinese general public. Methods: Overall, 150 choice sets and 28 EQ-5D-Y health states were valued using DCE and cTTO methods with two independent samples, respectively. General public from 14 different regions were recruited using quota sampling method to achieve representativeness. We compared two modelling strategy: 1) fit the DCE data with mixed logit model with corrleated coefficients and a subsequent mapping procedure for anchoring; 2) fit the DCE and TTO data jointly in a hybrid model. Two criteria 1) coefficient significance and monotonicity; 2) prediction accuracy of the observed cTTO values were used to assess the models. For estiamting a cTTO only value set, we estimated the two models using 3 different estimators: 1) ordinary least square (OLS) as the base model; 2) a heteroscedastic model; 3) a random-effects intercept model. For assessing the feasibilty of using cTTO method valuing EQ-5D-Y states, we examined the distribution of the cTTO data using histogram and by plotting the mean values of individual health states against the level sum score (LSS), an indicator of overall severity of the health states (e.g., the LSS of 33333 is 15). We assessed the feasibility of the cTTO tasks in terms of survey completion time and participant-reported task difficulty. Results: In total, 1,476 individuals participated in the study, with 1,058 participated the DCE survey and 418 participated the cTTO survey. The highest mean TTO value is 0.924 for state 11112 and the lowest mean TTO value is -0.088 for state 33333. The hybrid model with an A3 term performed the best and was selected to estimate the value set. Data density is highest between the range of 0.5 to 1, with 21.89% being negative values (i.e., <0). Less than 2% of the values were at -1. The highest and lowest mean cTTO (SE) value is 0.924 (SD: 0.011) for state 11112 and -0.088 (SD: 0.025) for state 33333, respectively. State 33333 is the only state with a negative mean value. 74.16%, 59.33% and 11.48% participants agreed that the cTTO tasks easy to understand, easy to differentiate the health states and easy to decide their answer, respectively. When modelling the cTTO data without DCE data, all models achieved monotonicity, but 1 coefficient (level 2 usual activities, p-value=0.075) in the OLS model was not significant at the 0.05 level. The prediction accuracy of the models was similar, with the random effects model exhibiting the lowest cross validation MAE. Discussion: Following the international protocol and using a larger cTTO design, this study established the EQ-5D-Y value set using a hybrid model for China. Future EQ-5D-Y valuation study could consider using a larger cTTO design for estimating the value set. Moreover, it is possible to establish an EQ-5D-Y value set using cTTO data alone. Given it is still not clear how the preferences measured by cTTO and DCE methods differ and any method combining both preference data seems arbitrary. The use of DCE method to obtain relative importance and use cTTO value to anchor which on a QALY scale may not be necessary. | Zhihao Yang | Valuation, Youth | 45540 | Completed | 2020 | 2021 |
| 20190580 | Severity and EQ-5D (SEVQ). How can EQ5D-utilitites capture notions of severity for priority setting in health care. | The two-page proposal on which this is based is attached. The EuroQol Exec requested a full-length proposal with more details, and for the requested budget to be capped at 150k €The urgent need for fair, equitable, and publicly acceptable priority setting criteria is attested to by an array of government white papers and scholarly works. QALY-based cost-effectiveness (utilitarian) alone is often considered insufficient. In order to accommodate other ethical concerns, various forms of severity criteria, to be applied on top of or alongside QALY models, have been suggested. However, there is no unambiguous answer to what severity is, and the topic has recently been debated byeconomists and philosophers in several publications.SEVQ aimstoinvestigate linksbetween the descriptive system of EQ-5D and ‘severity’, and to investigate to what extent respondents prioritise the most severely ill, the worst off, or tends towards utility maximization. | Mathias Barra | Valuation | 383641 | Ongoing | 2020 | 2025 |
| 20190151 | extension of 20190150: Exploring non-iterative time trade-off methods for valuation of EQ-5D-5L health states: an on-line experiment | Objectives In our previous investigation of two non-iterative Time Trade-Off (TTO) methods - open TTO and non-stopping TTO - we found indications that EQ-5D health states could be evaluated using approaches with reduced burden on both interviewers and interviewees compared to the cTTO method. Inspired by recent developments in online TTO assessments, we devised a self-administered TTO method (referred to as sTTO), combining elements of the two non-iterative TTOs. Our aim was to evaluate the feasibility of sTTO by comparing it with the conventional TTO (cTTO) in a sample of the general population. Methods We developed a computer-based tool similar to EQ-VT for the valuation of EQ-5D-5L health states using sTTO. Thirty EQ-5D-5L health states, chosen from an orthogonal array, were evaluated by individuals from the general population in Guizhou Province, China. Participants were provided with a pre-recorded video explanation of the valuation task before completing 11 sTTO tasks independently, without assistance from interviewers. For comparison with cTTO, we utilized data collected in a previous study following the EQ-VT protocol. We compared the burden of administration, logical consistency, value distribution, acceptability and modeling performance of the two methods. Results A total of 324 participants contributed data, with 143 using the cTTO method and 181 using the sTTO method. On average, the time taken to complete the survey and a single valuation task was 26 minutes and 1.5 minutes shorter, respectively, with sTTO compared to cTTO. We observed logical inconsistencies in 78% of participants using sTTO, with 51% showing severe inconsistencies, compared to 1.4% and 14% respectively for cTTO. The mean health-state value for sTTO (0.293) was slightly higher than that for cTTO (0.256). However, cTTO values displayed a smoother and more continuous distribution with fewer spikes and gaps, and a wider range of unique values. Additionally, cTTO outperformed sTTO in all criteria of modeling performance. Participant feedback indicated moderate challenges with sTTO compared to cTTO. Conclusion While the sTTO method proved to be significantly more time-efficient for valuing EQ-5D-5L health states, suggesting acceptable administration burden, the data quality was inferior to that of cTTO data collected with trained interviewers. Participant feedback also suggested that sTTO presented moderate challenges, slightly less acceptable than cTTO. These findings indicate that the current design of sTTO may not be feasible for valuing EQ-5D health states when self-administered. Future research could explore its feasibility for use in group interviews and investigate alternative designs for self-administered TTO valuation. | Zhihao Yang | Valuation | 23350 | Completed | 2020 | 2023 |
| 20191110 | Meeting Asia Policy Makers at HTAi 2020 | Efficient use of scarce health care resource is of paramount importance for Asia due to its large population and projected increases in chronic diseases. There is a growing interest in developing health technology assessment system to support evidence-based reimbursement and coverage policy making in this region. Over the past few years, the EuroQol Groupincreases its support of EQ-5D related research in Asia which certainly promote the EQ-5D instruments in the region. However, our engagement in Asia has been largely limited to academia. We propose a half-day meeting prior to the 2020 HTAi Annual Meeting inBeijing to engage Asian HTA agencies and health policy makers and communicate on the recent development in patient-reported outcome measures and the potential role the EQ-5D instruments can play. | Feng Xie | Education and Outreach | 19800 | Ongoing | 2020 | 2023 |
| 20191180 | Improved anchoring of stand-alone DCE duration value sets by incorporating immediate death and maximum endurable time; a mixed methods approach based on the EQ-5D-5L and E-QALY instruments | Aims:The primary aim of this research is to improve the anchoring of stand-alone DCE duration value sets for the EQ-5D-5L and E-QALY instruments on the (0-1) QALY scale, which is achievedusing an improved DCE format and the incorporation of Maximum Endurable Time (MET) in the analyses of health state preferences, resulting in more reliable and more reliably anchored tariffs and in a more accurate representation of respondents’ preferences for living in relativelypoor health states.Methods:A new DCE with duration format is proposed that combines a) matched pairwise choice tasks that includeperfect health with b) matched pairwise choice tasks that includeimmediate death. This newformat has the advantageof including both perfect health and immediate death in the DCE (i.e. the traditional QALY anchor points) while constraining the complexity of the choice tasksand ensuring that respondents use the correct multiplicative utility function for health state valuations. The performance of the DCE with duration format will be established using a combination of qualitative and quantitative research.The new formatis anticipated to significantly reduce the complexity of the choice tasks compared to standardDCE duration choice tasks whileimproving the identification of respondents’ time preferences.The latteris crucial for being able to correctly extrapolatehealth-state preferences towardsa duration of zero (i.e. extrapolated immediate death), which haspreviously been established as key to reducing differences between stand-alone DCE and time trade-off (TTO) based tariffs. The improved identification of respondents’ time preferenceswill also allow for an investigation of whether the concept of Maximum Endurable Time (MET) is required to correctly establish the QALY anchor points using a DCE duration format, and whether METcan explain the commonly observed disparity between extrapolated immediate death and immediate death when modeled as an alternative specific parameter in the DCE.Finally, the performance of the format will be evaluated with respect to obtaining stand-alone E-QALY tariffs. | Marcel Jonker | Valuation | 87931 | Ongoing | 2020 | 2021 |
| 20190900 | An investigation of the ‘shrinking factor’ model for predicting vision and cognition bolt-on values elicited from the general public | Objective: In our previous research, we developed a "scaling factor model" – to estimate bolt-on value sets. The objective of this project was to investigate the feasibility of applying this model using a general public sample and a parallel design, specifically testing it with health states featuring vision or cognition bolt-ons. Methods: The study utilized three descriptive systems: the original EQ-5D-5L and two variations with bolt-ons – one involving vision ("EQ+VI") and another involving cognition ("EQ+CO"). A valuation study is conducted in Guizhou Province, China, with a general public sample using the composite time trade-off (cTTO) protocol. A team of interviewers collects data, both the scaling factor model and standard model were employed to estimate bolt-on value sets. To evaluate the model performance, we used a by-state cross-validation approach. Results: A total of 596 participants completed the valuation tasks, and the results indicated that adding a bolt-on dimension increases health state values for mild to moderate problems but decreased values for severe to extreme problems. The scaling factor model outperformed the standard models in predicting observed health state values, showing promise in estimating bolt-on value sets. However, differences were noted between vision and cognition bolt-ons, highlighting the importance of understanding the specific characteristics of bolt-on dimensions. Discussion: The findings confirmed the validity of the scaling factor model in estimating value sets for EQ-5D-5L health states with bolt-ons, preserving the relative importance of standard EQ-5D-5L sets. Future study should test this model with discrete choice experiment (DCE) method, which has also been used to generate EQ-5D-5L value set in some populations. | Nan Luo | Descriptive Systems, Valuation | 56400 | Completed | 2020 | 2023 |
| 20180750 | Developing a value set for the child-friendly EQ-5D health-related quality of life instrument EQ-5D-Y in Hong Kong | Background: The EQ-5D-Y is currently used to assess health-related quality of life of health states experienced by youth populations. However, there is no country-specific EQ-5D-Y value set available currently for the local Chinese population. Recent research indicates that using adult value sets to EQ-5D-Y states is inappropriate. However, developing valuation studies for the child population presents challenges. This study aimed to develop a value set for the EQ-5D-Y by the local adult population in a child perspective in HK following the recommended valuation proposal for EQ-5D-Y studies by the EuroQol Group. Methods: A cross-sectional valuation survey was conducted between December 2021 and July 2023 among the adult Chinese population aged 18 or above. During the interview, the participants either completed a discrete choice experiment (DCE) exercise or a composite time-trade off (C-TTO). The DCE was applied to estimate the relative importance associated with each EQ-5D-Y level in each dimension, while the C-TTO was used to anchor the latent scale DCE value set into the quality-adjusted life years (QALY) 0-1 scale. Both the DCE and the C-TTO were administered through computer-assisted personal interviews using the EQ-PVT platform, following the international valuation protocol for EQ-5D-Y-3L established by the EuroQol Group. The respondents answered either DCE and C-TTO questions from a child perspective to obtain their preferences. Hong Kong’s value set was estimated based on the responses of the DCE and C-TTO collected from the valuation survey. Results: A total of 1,396 HK Chinese adults aged 18 or above responded to the study, with a response rate of 22.0% (1,396/6,340). However, missing values were identified among 161 respondents. Thus, the responses from these 161 respondents were excluded, leaving a total of 1,235 respondents with complete information were included in the study, comprising of 1,030 completed DCE exercises and 205 completed the C-TTO valuation tasks from a child perspective. The value set model of EQ-5D-Y is established for the HK children population. Conclusions: This study elicits health preferences of the adult Hong Kong population from a child’s perspective using EQ-5D-Y-3L and the generated value sets, allowing the implementation of a cost-utility analysis for the youth population in Hong Kong. | Eliza Wong | Valuation, Youth | 0 | Ongoing | 2019 | 2024 |
| 20191210 | Testing of the ranking exercise -EUQ2137080 (TRF2191) - English (US) | Face Validity Results | This project is undertaken by EuroQol’s version management committee. The aim of the project is to test how respondent will rank order the preliminary severity levels of the EQ-5D-Y-5L. The deliverables of this project are: 1) a definitive protocol for testing the ranking of the qualifiers during translation of the EQ-5D-Y-5L which may well be adapted for use in the adult 5L version as well; 2) a strong paper on the development of the ranking exercise; 3) an indication of how the EQ-5D-Y-5L performed generally in different languages. This information could assist the Exec in making a decision whether to promote the EQ-5D-Y-5L from a beta to an improved version; 4) a validated exercise which could be added to studies validating the EQ-5D-Y-5L and the EQ-5D-5L in future. | Jennifer Jelsma | Others | 24000 | Completed | 2019 | 2020 |
| 20191010 | Psychometric properties, feasibility and usefulness of the extended EQ-5D-Y-5L in children with prevalent disease conditions in Ethiopia | Background: Type 1 Type-1 diabetes mellitus and heart diseases are the most common medical problems among children in Ethiopia. Children's health-related quality of life (HRQoL) outcome measure are currently receiving attention. EQ-5D-Y-5L health survey in children has been used in different countries. Objective: To assess the psychometric properties of the Amharic EQ-5D-Y-5L Experimental version and, thereby, to test whether the measure is feasible, reliable, and valid to use among healthy and children with prevalent disease conditions. Methods. Data were collected using a pen-and-paper survey that presents the self-complete Amharic EQ-5D-Y-5L Experimental version and EQ-VAS. A cluster sampling strategy was used to select 200 school children study participants from ten sub-cities in Addis Ababa city, Ethiopia. A supervisor selected one class from the elementary school of each sub-city using simple random sampling techniques. Within each class (n=40-60), 20 students between the age of 8 and 12 were randomly selected and invited to complete a self-complete Amharic EQ-5D-Y-5L Experimental version and EQ-VAS. For children with the prevalent disease conditions (Type-1 diabetes mellitus, congestive heart failure, rheumatic heart disease) participants were identified from Tikur Anbessa Specialized Hospital (TASH) of diabetic and cardiac clinics. A sample of 55 study participants (23 congestive heart failure, 17 rheumatic heart disease, and 15 Type-1 diabetes mellitus) who had unchanged health state based on the general health item received the questionnaire again 10 days after the first task for the test-retest procedures to investigate reliability of the instrument. Ceiling was compared in between paired versions with the X2 test and the absolute reduction in proportion scoring was calculated. The test-retest method was used to determine stability. The Wilcoxon signed-rank test was used to compare the mean (SD) LSS scores for each instrument between groups with known health conditions to assess known group validity. Results. The mean (SD) age of the participants in this study was 10.35 (1.42) years of which 51.00% were female. A sample of 450 participants (200 school children, 65 Type-1 diabetes mellitus, 70 Rheumatic heart disease, and 115 congestive heart failure) were recruited and 437 participants (200 school children, 62 Type-1 diabetes mellitus, 66 Rheumatic heart disease, and 109 congestive heart failure) were included in the sample for analysis. All of the EQ-5D-Y-5L dimensions and the EQ-VAS had strong intraclass correlation coefficients (ICC), which fall within the range of good agreement for all respondents (ICC ranges from 0.52-0.77, p 0.001). The differences in self-complete Amharic EQ-5D-Y-5L Experimental version and EQ-VAS scores between disease groups demonstrate the self-complete Amharic EQ-5D-Y-5L Experimental version's significant known group validity. Conclusion: The Amharic EQ-5D-Y-5L Paper EXPERIMENTAL Self-Complete appears to be a suitable measure for assessing HRQoL in various child population groups in Ethiopia, according to this study. | Abraham Gebregziabiher | Youth | 23550 | Completed | 2019 | 2020 |
| 20191030 | Investigating response heterogeneity in the EQ-5D | Systematicdifferences in the ways that people use and interpretresponse categories can introduce variationwhen using self-reports (like the EQ-5D) tocompare health or quality-of-life across heterogeneous patient orpopulation groups.Inter-group comparisons using these self-reported measureswhich experience such variation may bring into questionany perceived findings.Self-reportedhealthmeasures can also be affected by response style;a respondent’s tendency to systematically respond to questionnaire items ina given way regardless of item content. Given the growing demand for the routine collection of self-reported health measures like the EQ-5D in registries, cohort studiesand national health surveys there is obviousvalue in understanding whether and to what extent the EQ-5D suffers from response heterogeneity. This study proposes to undertake a series of analyses using a range of different datasets to understand Version 10SEPT2018Page 2if response heterogeneity introducesvariation intothe EQ-5D, and if so the likely extent of this. We will explore availablesecondary datasets that include the EQ-5D(e.g.UK PROMs, GP Patient Survey, Multi-Instrument Comparison (MIC)study,and Cancer 2015 cohort study) to identify which dataset is most appropriate for answering our study question. These datasetsoffer an opportunity to test for the existence of two types of response heterogeneity: reporting heterogeneity (using Rasch analysis and/orlogistic regression) and different response styles (using variations on the orderedprobit and latent class approaches). We will also explore if response heterogeneity changesover time usinglongitudinal datasets | Paula Lorgelly | Populations and Health Systems | 52400 | Ongoing | 2020 | 2024 |
| 20190780 | Valuation of the EQ-5D-5L in the Kingdom of Saudi Arabia (KSA) | Objectives:Saudi MOH is one of the first entities across the Middle East region which started the adoption of economic assessmentsin reimbursement decision making. The cost-utility analysis will be soon adopted as a tool for economic evaluation and for assessing the cost-effectiveness of new and existing health technologies. Since no country specific Utility values exist in KSA, theprimary objective of this study (the Saudi Arabia EQ-5D-5L Valuation Study) is to develop a value set for this instrument in KSA which can be used to support the health utility estimation in future economic evaluations for reimbursement decision making in KSA.Methodology:Asingle country, population based cross-sectional survey study based on the EuroQol Valuation Technology (EQ-VT) study protocol generated by the EuroQol group and administered using computer-assisted personal interviews. A minimum of 1,000 respondents will be targetedwhere a Quota sampling will be adopted to obtain a representative sample of the Saudi population taking into consideration the following factorsRespondents’ location; 13 mainregions of KSA Different age groupsGenderEducationEmploymentEligible population should be (1) Saudis 18+ years old; (2) able to understand the tasks, contents and techniques of the interview process (as judged by the interviewer) ;(3) able to give informed consent, (4) do not have current acute illness or cognitive impairments that would interfere with the interview conduct.Direct advertisements & flyers in addition to digital recruitment will beused for recruiting the study population. Third-party vendor will be contracted by the Saudi MOH for the following activities:Study documents developmentIRB submissionsRespondents’ recruitment, field Interviews, data collection &quality checksData analysis & reporting | Ahmed Aljedai | Valuation | 0 | Ongoing | 2019 | 2025 |
| 20180710 | Valuation of EQ-5D-5L in Uganda and exploration of a ‘lite’ protocol | The primary objective of this project is to develop the EQ-5D-5L value set for Uganda. A total of 500 participants will be recruitedfrom fourregions across Uganda (Central, Western, Eastern, and Northern) to form a representative sample of the general Ugandan population in terms of age, sex, ethnicity, andeducation attainment. Each will be asked to complete 20 composite time trade-off (cTTO) tasksby trained interviewers. Thisdesign will enable the inclusion of more EQ-5D-5L health states(compared to the 86 health states used in the standard valuation study), allowing for greater precision in the parameterestimation.The EuroQol Valuation Technology (EQ-VT) softwarewill beused in data collection. TheTTO based model will be used to develop the value setfor Uganda. A secondary objective is to evaluate the performance of a ‘lite’ valuation protocol. Half of the data will be used to estimate the value set and then the results will be compared to those using all the data. This would provide guidance on the design of a ‘lite’ protocoland benefit future valuation studies, especially in low and middle-income countries.Anadditional sample of 160 participants will be recruited from the four regions to conduct a health inequality survey. This includes a series of trade-off questions presented usingweb-based software. The responses will be used to estimate aninequality aversion parameter for Ugandawhich can be used as part ofdistributional cost-effectivenessanalysesof interventions and policies. | Mark Sculpher | Valuation | 47579 | Completed | 2020 | 2021 |
| 20190600 | Does EQ-5D cover the most undesirable health problems in different cultures? A study of seven countries using a mixed methods | When using patient reported outcomes (PROs) measures such as EQ-5D internationally, it is important to assess the extent to which their content is valid and relevant across different countries and cultures. If it is shown that content is appropriate for use in different regions, it can strengthen the case for using the instrument in a wide range of cultural settings. A recent study in Asia revealed that some health concepts which are important to Asianpopulations are not included in EQ-5D. Nevertheless, that study was limited to 4 countries and the methodology used was only intended to explore perceptions of health and health problems in | Nan Luo | Descriptive Systems | 172632 | Ongoing | 2020 | 2024 |
| 20190920 | Understanding adult preferences in the valuation of child and adolescent health states measured with the EQ-5D-Y: A qualitative approach. | BackgroundThe EQ-5D-Y was developed to measurehealth-related quality of life(HRQOL)in children and adolescents aged 8 to 15. The valuation of the measure has confronted the EuroQol Group with several challenges. For example, evidence shows that adults value HRQOL for a 10-year old child higher than for themselves, resulting in a relatively narrower value range for the EQ-5D-Y. This may be due to a difference in the value of life years, maximum endurable time, and extrinsic goals between children and adults; however, the reasons behind this difference are currently unclear. Evidence further shows that adults value health differently for children of different ages. Therefore, the current reference of a 10-year old child may insufficiently reflect preferences regarding, for example, a 15-year old adolescent. To date, no qualitative studies have been published that provide insight into the reasoning of adults while valuing EQ-5D-Y health states. Aim: To examine (i) the difference in value adults attribute to their own HRQOL and that of a (10-year old) child and (15-year old) adolescent, (ii) how considerations—that are not directly related to the described health states—influence adults’ valuation, and (iii) whether (and why) adults attribute different value to similar health states described for a child and an adolescent and the influence of time/duration in this context.Methods:Adult members of the general population (n=25) will perform composite c-TTO and DCEtasks associated with EQ-5D-Y health states using a think-aloud protocol and, subsequently, participate in a semi-structured interview with retrospective verbal probes. | Vivian Reckers-Droog | Youth | 38000 | Completed | 2020 | 2021 |
| 20191050 | Using EQ-5D to inform real-world decision making : a cross-sectoral perspective | Multiple agencies responsible for planning and delivery of services in separate (and ostensibly unrelated) public sectors are being encouraged to share/exchange data. LARIA’s annual conference this year includes several speakers from PHE with workshops specifically targeting the central issue of improving information flows and data exchange. The perspective of researchers within separate sectors is largely limited by the scope defined by the services for which they are responsible. The historic emphasis on using EQ-5D for “health” applications has naturally reinforced the view within the health sector this is the specific role for which it is best suited. Alternative uses of EQ-5D – outside the health sector – are to be found and this suggests a possible role for such data in providing a linking mechanism between data sets on a cross-sectoral basis. This proposal is designed to test that challenge by bringing together relevant stakeholders, research academics and policy/planning advisors from Local Authorities, health and criminal justice sectors. LARIA has expressed a general willingness to support the proposal across its regional and national networks should funding support be made available. | Paul Kind | Education and Outreach | 11390 | Ongoing | 2019 | 2023 |
| 20190440 | Proposal of the 2nd EuroQol Asia Academy Meeting | EQ-5D is the most widely used quality of life measure in health economics and outcomes research around the world including the Asian region. The 1stEuroQol Asia Academy Meeting was successfully held in Guangzhou, China on 11-12 June 2019, bringing 38 researchers from Asian countries and 5 senior EuroQol members together for sharing, learning, discussing, and collaborating their research and expertise. There were 40 abstracts submitted of which 26 were discussed in the meeting: 14 as paper and 12 as poster presentation. A range of topics were covered, including (i) the similarities and differences of health-related quality of life concepts between Asia and the western counties, (ii) additional EQ-5D dimensions that specific to Asian population (e.g., sleep and eat), (iii) problems (and solutions offered) of completing the EQ-5D questionnaires and valuation study in rural and illiterate respondents, (iv) the application of EQ-5D youth version in Asian countries that also possible to be used by adult respondents who have difficulties to complete the adult version (v) valuation studies, (vi) application of the questionnaires in different populations. Several interesting findings were resulted from studies employed qualitative method, rarely discussed in the general plenary meeting. Ideas of collaboration were discussed, among them are: investigate the (bolt-ons) dimensions thatspecific to Asian population in more countries, (ii) reviewpsychometric evidences of EQ-5D in local (non-English) journals, (iii) investigate the best way to obtain EQ-5D data from difficult-to-reach groups of participants, such as rural and illiterates. Allattendees felt that this meeting was beneficial for their on-going studies or future study plans.More specifically, the senior EuroQol members who were present all found that the level of the papers presentedwas good and the discussion useful. The EuroQol associates who attended the meeting (beyond the organizing committee; Michael Herdman, Paul Kind and Aureliano Finch) all support a next meeting, as they considered such meeting a timelyinvestment, given the quality of the papers and the dynamics of the area. This second meeting will thus continue the momentum created by the first meeting: to foster sharing of research projects and results, expertise and experience. Collaboration projects being held could also be reported. The format of meeting will be similar to the usual general meeting: started with presentations about the EuroQol Group and the EQ-5D questionnaires, followed by paper discussion and guided poster presentations. Discussions about future plan and collaborations will be held at the end of the meeting. We can expect the prominent experts and researchers that attended the first meeting and the ones who were not able last time will participate, especially when the announcement is made at the earliest time. | Fredrick Purba | Education and Outreach | 67500 | Completed | 2022 | 2022 |
| 20190370 | Compare the TTO and DCE modelling results on individual level | Background So far, little attention has been given to the question what level of agreement is required to support the hybrid model, and what level of agreement can realistically be expected from DCE and TTO data. In this study we investigate the relationship of DCE coefficients and TTO coefficients on individual level. Methods A total of 210 university students were recruited from Guizhou Medical University, China to complete both TTO and DCE tasks. All participants valued 31 states using TTO and completed 55 choice tasks in the DCE. The set of states in the TTO tasks included a 25-state orthogonal design + 5 mildest states + 55555. A Bayesian efficient design algorithm was used to construct Bayesian D-efficient design with 60 pairs (55 unique pairs + 1 dominated pair + 4 repeated pairs) for the other respondents. The priors of the DCE design were from a sample of 36 students who completed a design of 40 pairs of DCE design constructed using priors from previous study. Students completed the TTO and DCE tasks in two separate face-to-face session, with the assistance of a trained interviewer. The interval between two sessions was <7 days. All responses were modelled by student using OLS (for TTO) and conditional logit (for DCE) using a 5-parameter (5P) model. 20-parameter (20P), 10-parameter (10P) main effects model were used to compare two sets of coefficients on aggregate level. Results 210 university students completed both sessions. For the TTO session. On average, each student spent 59.37 (SD: 18.93) minutes and used 8.97 (SD: 2.05) moves in the TTO tasks. 174 students completed the design of 60 DCE tasks (including 1 dominant pair test and 4 repeated pair tests) and 36 students completed the design of 40 DCE tasks. Among the 174 students of completing 60 DCE tasks, 166 students passed the dominant pair tests. 49, 67, 39 and 18 students passed 4, 3, 2, 1 repeated-pair tests, respectively. For the coefficients, the average Pearson correlation was 0.435 (SD: 0.462, median: 0.567, range: -0.859 to 0.999). Respondents whose DCE data was of better quality according to R2 showed better consistency in their TTO and DCE modelling results. On aggregate level, two sets of coefficients had a Pearson correlation coefficient of 0.885 for the 5P model, 0.906 for the 10P model and 0.871 for the 20P model. Discussion Our results showed that on individual level, there are some evidence that the two sets of coefficients are associated, but not for all respondents. A main limitation of this study is the limited power of modelling coefficients on individual level. On aggregate level , it is clear that the linear relationship between two sets of coefficients exist, but varied with the severity levels of the coefficients. | Zhihao Yang | Valuation | 33720 | Completed | 2019 | 2020 |
| 20190200 | Validation of the Chichewa versions of the EQ-5D-Y-3L and the EQ-5D-Y-5L in Malawi | Objectives The EuroQol Group has developed an extended version of the EQ-5D-Y with five response levels for each of its five dimensions (EQ-5D-Y-5L). The psychometric performance of the three response level version (EQ-5D-Y-3L) has been reported in several studies involving both healthy children as well as clinical populations, but that of the EQ-5D-Y-5L has only been reported in a few studies. This study aimed to translate and psychometrically evaluate the Chichewa (Malawi) versions of both the EQ-5D-Y-3L and EQ-5D-Y-5L. Methods The EQ-5D-Y-3L, EQ-5D-Y-5L and PedsQL™ 4.0 self-report Chichewa versions were administered to children and adolescents aged 8-17 years in Blantyre, Malawi. Both the EQ-5D-Y-3L and the EQ-5D-Y-5L were evaluated using gold standard psychometric methods, including missing data, floor/ceiling effects, reliability (internal consistency) and validity (convergent, discriminant, known-group and empirical). Results A total of 289 participants (95 healthy, and 194 chronic and acute) self-completed the questionnaires. There was little problem with missing data (0.7). Convergent validity tested with PedsQL™ 4.0 self-report was found to be satisfactory (correlation >0.4). However, correlation between some of the dimensions for both versions of the EQ-5D-Y and the PedsQL™ 4.0 sub-scales was mixed. While there was evidence of discriminant validity with respect to gender and age (no association with EQ-5D-Y-3L and EQ-5D-Y-5L sum and utility scores), it was not evident for school grade (p<0.05). As regards empirical validity, the EQ-5D-Y-5L was 31%-91% less efficient than the EQ-5D-Y-3L at detecting differences in health status using external measures. Conclusions The EQ-5D-Y-3L and EQ-5D-Y-5L were both found to be reliable and valid for use among children and adolescents although with some limitations. Further, psychometric testing is required for test re-test reliability and responsiveness that could not be carried out in this study due to COVID-19 restrictions. | Janine Verstraete | Descriptive Systems | 14200 | Completed | 2019 | 2020 |
| 20190430 | Efficient designs for valuation studies that use DCEs with mapping to TTO health states | There were three components to this project: In the first, we investigated designs for valuation studies that use TTO tasks to map latent utilities from DCEs to the interval scale. Specifically, we examined how many health states should be used, and where they should be placed across the scale. We found that, for a fixed number of respondents and tasks per respondent, using more health states (at least 20) and placing these health states evenly across the scale, resulted in better predictive precision. In the second project, we examined a non-linear hybrid model, specifically a model that relaxed the assumption that the DCE latent utilities are a perfect linear function of the TTO utilities. We found that this model improved predictive precision in countries where the data showed departures from a linear relationship. In the third project, we sought to introduce spatially correlated model mis-specification terms to the linear hybrid model. We found that the approach proposed in the proposal resulted in a non-identifiable model in general, but did improve predictive precision when applied to a subset of the DCE health states. We then proposed an alternative approach designed to eliminate the identifiability issues. | Eleanor Pullenayegum | Valuation | 39917 | Completed | 2020 | 2023 |
| 20190350 | A comparison of DCEs with choice sets of size 2 and DCEs with various choice set sizes for the valuation of the EQ-5D | Recent work in the construction of DCEs has demonstrated that allowing the DCE to have choice sets of unequal sizes can be at least as efficient as DCEs with constant choice set sizes. It was conjectured that varying choice set sizes may be preferred by the respondents which might lead to more engaged respondents. We conducted two field experiments to check if this conjecture is true or not. In the first field experiment we compared six designs with choice sets of varying sizes (2, 3 or 4) and with options described by the EQ-5D-5L. In the second field experiment we compared three designs with choice sets of varying sizes (2, 4 or 6) and where options were pasta sauces. In the second field experiment designs with varying choice set sizes were perceived to get easier as the survey progressed but that was not the case in the first field experiment. Whether this was because of the nature of the options (pasta sauce choice is more familiar) or the larger variation in choice set sizes is not clear. | Deborah Street | Valuation | 14675 | Completed | 2019 | 2020 |
| 20190290 | Malaysian EQ‐5D‐5L Value Set Symposium and Workshop | A half-day symposium followed by a half-day workshop was organized to inform healthcare decision makers and researchers on the availability of a Malaysian EQ-5D-5L value set and provide guidance on its applications, specifically in economic evaluations and outcomes research. | Asrul Shafie | Education and Outreach | 20097 | Completed | 2019 | 2019 |
| 20190670 | Cross-cultural Validity and Reliability Testing of the Toddler and Infant (TANDI) Health Related Quality of Life Measure, an experimental version of the EQ-5D-Y Proxy | Background The EuroQol Group is exploring the development of a Health-Related Quality of Life measure for Toddlers and Infants (EQ-TANDI) aged 0-36 months. This study aims to report on the cross-cultural adaptation and validity of the South African Afrikaans EQ-TANDI. Methods The development of the Afrikaans EQ-TANDI followed the EuroQol guidelines including forward-backward translation and cognitive interviews with 10 caregivers of children aged 0-36 months. Thereafter 162 caregivers of children 0-36 months of age were recruited from a paediatric hospital in-patient (inpt) and outpatient (outpt) facility. The EQ-TANDI, Ages and Stages Questionnaire, FLACC and dietary information were completed by all caregivers. The distribution of dimension scores, Spearman’s correlation, analysis of variance and regression analysis were used to explore the validity of the EQ-TANDI. Results The descriptive system of the EQ-TANDI was generally well understood and accepted by caregivers. The correlation coefficients for concurrent validity were significant and moderate for pain and weak and significant for the other dimensions hypothesised to correlate. Known groups were compared and inpts had a significantly higher report of pain (X^2=7.47, p=0.024), more problems reported across all EQ-TANDI dimensions (recorded on the level sum score) (KW-H=3.809, p=0.05) and reported significantly worse health on the Visual Analogue Sale (VAS) (KW-H=15.387, p<0.001). There were no age-related differences except for a lower report of problems with movement in the 0-12 month group (X^2=10.57, p=0.032). Conclusion: The Afrikaans version of the EQ-TANDI is well understood and accepted by caregivers and valid for use with children 0-36 months in South Africa. | Janine Verstraete | Descriptive Systems, Youth | 8851 | Completed | 2019 | 2020 |
| 20190230R1 | Preference heterogeneity in health valuation | To better understand heterogeneity in health valuation and life years within the national population of the U.S., this study is aimed to conduct a scale-adjusted latent class model on a stated preference paired comparison dataset. The valuation study identified latent groups that place different absolute and relative importance (i.e., scale and taste parameters) on the attributes of health profiles and life years. I estimated health values described by the EQ-5D-5L descriptive system on a quality-adjusted life-year (QALY) scale accounting for latent heterogeneity in scale and taste, as well as controlling heteroskedasticity at task level variation. The results of the latent class analysis included 20 main effects of the EQ-5D-5L health profiles and a power value on the life span attribute that relaxes the constant proportionality assumption (i.e., discounting). Once scale heterogeneity was controlled, I found substantial heterogeneity with three taste classes: a quantity-of-life oriented class (36.28%) that placed the highest value on the lifespan attribute and least value on the quality of life attributes, a sensitive to severe change class (29.49%) who were mostly on the quality of life-oriented nonetheless put more weight when health condition changed from moderate to severe problems, and a third class (34.29%) who placed the lowest importance on the lifespan attribute and were highly sensitive to a slight change from no problem to any problem in any health dimension. The likelihood of being a member of the quantity of life-oriented classes was associated with comparative lower educated people (p<0.05). The results also show two-scale classes as well as heteroskedasticity within each scale class. Future confirmatory studies may confirm the differences in taste between classes in terms of the effect of quality of life and life span attributes. | Suzana Karim | Valuation | 42950 | Completed | 2019 | 2020 |
| 20190470 | Bringing Patients Back to the PROM. Development and delivery of a workshop to promote the use of the EQ-5D to inform patients | A workshop was developed to help attendees learn how routine PROM data collection strategies could be improved by engaging the very patients who are completing the PROMs. The workshop started by explaining routine PROMs collection – how it differs from research collection – and the problems in terms of response rates and how the data is used. It then went on to describe shared decision-making (SDM) using the 3 talk model by Elwyn et al. Attendees were asked to consider how SDM worked in their clinical context. We then went through each of the 3 talks, providing examples of how PROMs could be used in each. Videos from patients and clinicians who have used examples were provided. Graphic demos were also given. Attendees where then put into groups to consider what might work in their context – given the question “why should a patient report their health outcome” The workshop finished by giving further resources, and a discussion of how new initiatives can engage patients. 3 workshops were given and a website was created. | Nick Bansback | Populations and Health Systems | 36450 | Completed | 2020 | 2020 |
| 20180340R1 | Trickling down to explain the valuation of worse than dead states: towards more valid values. | Background: Recent studies concluded that for health states considered worse than dead (WTD), as measured with the Time Trade-Off (cTTO) method, negative mean values were insensitive to health state severity, which represents a validity problem for the cTTO. However, the aforementioned studies analysed negative values in isolation, which causes selection bias as the value distribution is truncated. Aim: To investigate the validity of aforementioned studies and of negative values in general. Methods: The ‘threshold explanation’ was formulated: beyond a certain severity threshold, preferences change from better than dead (BTD) to WTD. This threshold differs between respondents. Thus, negative values across severity are obtained from different respondents, and responses added for higher severity contribute negative values close to zero , explaining the aforementioned insensitivity. This explanation was tested using data from the Dutch EQ-5D-5L valuation study. Respondents valued 10 health states. Based on respondents’ number of WTD preferences, segments were constructed, containing respondents with similar severity thresholds. Using regression models for each individual respondent, we examined the relation between values and severity, and compared respondents between segments. Results: Negative values, when analysed in isolation, were insensitive to severity. However, for individual respondents and within most segments, cTTO values and severity were negatively related. For individual respondents, negative slopes were steeper for segments with more WTD preferences, as predicted by the threshold explanation. Discussion: Analysing negative values in isolation leads to biased estimates. Analyses of cTTO values for individual respondents refute the insensitivity of negative cTTO values. | Bram Roudijk | Valuation | 14600 | Completed | 2019 | 2019 |
| 20190630 | EUROQOL Satellite Symposium - Applying Quality of life Measurements for Clinical and Economic Research | n the Brazilian Public Health System, recommendations for the coverage and reimbursement of new medicines, devices, or equipment are centralized in a committee (National Commission for Technology Incorporation in the Unified Health System). To be approved, the claimant must provide health technology assessments (HTAs). These include measures of safety, efficacy, effectiveness, and cost-effectiveness to substantiate the decision-making process. There is no restriction on the type of economic model that can be submitted for review. The recommendations are presented as legal documents and economic analysis guidelines.2 This document discusses focus on the possibilities of the utility measures, without any reference to sources or methods or the selection of the best evidence for utility parameters. Health insurance plans in the private sector have a similar process through an independent agency (National Regulatory Agency for Private Health Insurance and Plans) that is responsible for defining a mandatory list of procedures and medicines to be included in all plans. Brazilian preference research was sparse in both the public and private sectors. In this context, utility is a concept adopted from economics that refers to preferences for a specific health state or outcome. This preference (or weight) is usually based on a large group of people representing the general population. Utility is a proxy of quality of life and reflects the preferences of individuals or society for any particular set of health outcomes. Utility expresses the health-related quality of life (HRQOL) in a single value scored on a scale anchored on 1 = “full health” and 0 = “death,” usually derived from “off-the-shelf” preference-based measures such as the EQ- 5D questionnaire. Some health states may be considered worse than death and given negative utility estimates.Utilities are used for informing cost–utility models and can sometimes be obtained from different sources; it is important to create a hierarchy when multiple estimates are available. In a cost–utility analysis, competing health technologies are compared in terms of their cost per “year in full health.” The quality-adjusted life-year (QALY) is one such widely used measure that combines a person’s life expectancy and the value of their HRQOL in a single estimate. The HRQOL can be expressed in utilities for economic analysis. It is important to distinguish between the utility weights and the profiles or health states. The measurement process using multiattribute instruments starts by asking for a description of individual health states, called profiles. The selected profiles are converted to utilities compared with a table called the value set, which contains weights for each profile. These weights are usually collected from the general population (valuation process) and represent preferences for each possible health state. In one Brazilian state, in 2011, value set was developed for the Short-Form Six-Dimension (SF-6D) instrument.9 For 3-level version of EQ-5D (EQ-5D-3L), the value set was developed nationally in 2013.10 Nonetheless, in the Brazilian HTA ecosystem, utility estimates based on Brazilian samples are limited. Considerations of the source and type of utility values are especially important in a modeling context, in which the lack of transparency, including the lack of a hierarchy for utility data sources, is a major issue for any estimation and could compromise model reliability. The absence of clear guidelines permits flawed modeling practices, given that an ad hoc evidence selection can result in cherry picking. An extreme example of this practice would be feeding a model with data to uphold the owner’s perspective, creating a false favorable impression of a particular technology. In recent years, the process of decision-making using cost–utility data in Brazil has improved. Because of the lack of confidence in some economic models, the cost–utility models have a mixed impact on real-world judgments. Transparently built models can hopefully support better decisions for the rational use of health resources. Few international guidelines discuss how to select the best utility data from different perspectives in the Brazilian context. This document aims to present the first version of the Brazilian guidelines for a utility measurement supporting an economic analysis. A glossary of technical terms was created. As an initial step, a rapid review of the literature was conducted on July 6, 2020, based on an adapted search strategy from MEDLINE,EMBASE, and LILACS databases and the websites of The University of Sheffield, the Decision Support Unit of the National Institute for Health and Care Excellence (NICE), and the EuroQol Group. Additional individual search strategies were adapted for each recommendation to gather the main recommendations and debates previously published on utility measurement issues for economic analyses. Approximately 110 documents were reviewed. The experts were selected based on their previous experience with utility measurement instruments or economic models. The the external reviewer was selected for his experience with both topics. Another important criterion was to be a manager or member of the 2 incorporated sectors in Brazil: public health (Brazilian Public Health System) and insurance plans (National Regulatory Agency for Private Health Insurance and Plans). The review results were synthesized in a brief report. Then, in October 2020, these findings were discussed during a 5-hour online workshop, in which 5 lectures were presented by international speakers followed by debates. The complete program is available in the attached material. The expert group included a wide range of stakeholders—including government representatives, industry, academic groups, international guests, and a patient representative—and regulatory agencies, including the private health sector An adapted Delphi panel technique with 4 iterations was adopted for the construction of the final report. The draft report was sent to representatives, who used it to write the final report and who are listed here as coauthors. The recommendations are based on the proposal with the most approvals, but controversial topics are included in the recommendation or discussion. The text includes the rationale for the final decision | MARISA SANTOS | Education and Outreach | 17976 | Completed | 2022 | 2022 |
| 20170491 | Valuing Health-Related Quality of Life: An EQ-5D-5L Value Set for Belgium: Request for budget extention | The aim of this study is to generate a value set for Belgium by means of 1000 computer-assisted face-to-face interviews in a representative sample of the general Belgian population. To both ensure the representativeness of the sample and avoid a too wide and scattered spread of individuals to be interviewed, a multistage, stratified, cluster samplingwith unequal probability design will be applied, with provinces and municipalities used as clusters and age and gender used as strata.Health state values will be elicited using both the composite time trade-off (cTTO) and the discrete choice experiment (DCE) tasks. Different models will be tested. For the DCE task alone, a conditional logit regression model will be used. For the cTTO task alone, a modelling strategy similar to the one used in the reassessment of the English value set (Feng et al, 2016){Feng, 2016 #11}will be followed, taking into account censoring-like characteristics of the TTO scale, coefficient order of magnitude consistency, semi-continuous nature of the TTO scale, and the heterogeneity of the respondents ‘personal’ TTO scale. A Tobitmodel similar to the one used in the Dutch value set (Versteegh et al, 2016),{Versteegh, 2016 #10}taking into account censoring-like characteristics of the TTO scale, will also be considered. Finally, the hybrid cTTO and DCE model described in Feng et al, 2016{Feng, 2016 #11}and Ramos-Goni et al, 2017{Ramos-Goni, 2017 #7}will be used. The performance of the models will be assessed on the basis of internal consistency, goodness of fit and parsimony. | Gerkens Sophie | Valuation | 0 | Completed | 2017 | 2019 |
| 20190310 | Extending the QALY Valuation Study in England | Objective: The first aim was to test the feasibility of using time trade-off (cTTO) and discrete choice experiment (DCE) administered using the EuroQol Valuation Technology research protocol to derive utilities for the EQ-HWB-S. The second aim was to review the acceptability of the new measure for decision-making with informed members fo the public. Methods: EQ-HWB-S utilities were elicited using cTTO and DCE tasks with adaptations to fit the new measure. Participants (target n=600) from the UK general population were sampled based on age, sex and ethnicity. Interviews were undertaken using video-conferencing. Quality control (QC) steps were used to assess interviewers’ performance throughout the study. Data were modelled using linear, Tobit, probit and hybrid models. Feasibility was assessed based on the evaluation of the distribution of cTTO data, QC assessment and regression modelling results. Regression results were assessed based on theoretical considerations, monotonicity and statistical significance. For the second aim, members of the NICE Public Involvement Programme Expert Panel were invited to participate, with volunteers selected to represent varying age, gender, health and caring responsibilities. To familiarise the group with the measure and the source of the weights, each person completed a valuation interview (time trade-off (TTO) and discrete choice experiment (DCE)). This was followed by a cognitive debrief and information giving group session, where the weights from the feasibility valuation study were presented. Two subsequent separate focus groups obtained views regarding the measure, the utility weights, the sample (including exclusions) and the methods used. All sessions took place online. Focus groups were recorded, transcribed, and analysed using a framework approach. Results: There were 521 participants who provided cTTO and DCE data. The demographic characteristics were broadly representative of the UK general population although participants were more educated and there were slightly more females. Interviewers met QC requirements. cTTO values ranged between -1 to 1 with increasing disutility associated with more severe states. The hybrid Tobit heteroscedastic model had values ranging from -0.384 to 1. Pain, mobility, daily activities, sad/depressed had the largest disutilities followed by loneliness, anxiety, exhaustion, control and cognition in this model. Twelve people (50% female, aged 28-74) completed the interviews and nine attended the focus groups to assess feasibility. EQ-HWB-S was viewed positively due to the inclusion of dimensions such as exhaustion and loneliness. Some missing dimensions were identified (e.g. coping, sleep), but existing dimensions were considered to cover some of these (e.g. sleep covered by exhaustion). There was surprise at the small utility decrements for anxiety, control and exhaustion relative to other dimensions. Weights were seen as reflecting societal norms, respondent experience or knowledge, the composition of the sample and the interpretation of items. There were concerns that the valuation survey sample was not diverse or large enough to adequately represent the values of those who would be impacted by decisions based on EQ-HWB-S. Participants only supported data exclusions where it could be evidenced by multiple sources that the respondent did not understand or fully engage in the exercise. Other exclusions were considered problematic either because the data could reflect true preferences or for ethical reasons. DCE was preferred to TTO, but participants suggested TTO could be improved by providing more background information, different practice states, particularly the wheelchair state, and offering post-survey debriefs. | Clara Mukuria | Valuation | 201450 | Completed | 2020 | 2020 |
| 20190690 | Understanding the routine collection and use of EQ-5D data in large-scale applications within the healthcare system (Apersu supports) | See attached report | Jeffrey Johnson | Populations and Health Systems | 241000 | Completed | 2020 | 2023 |
| 20190130 | The performance of EQ-5D-5L in various disease groups with different durations | The recall period of 'today' used in the EQ-5D is different in HRQOL questionnaires, e.g. 'last 2 weeks' or 'last month’. However, for different types of diseases, the health state of ‘today’ could be different from the next day, or ‘today’ could be the same with the health state of the next 4 weeks. We aimed to investigate the performance of the EQ-5D-5L in different chronic diseases (i.e. tuberculosis (TB), type II diabetes mellitus (T2DM), HIV/AIDS, Asthma and Chronic Skin Diseases/CSD) and the importance of the recall period of the EQ-5D-5L in the aforementioned diseases. A sample of adult patients from three hospitals in the city of Bandung, Indonesia, participated in two data collection sessions. In the first session, patients completed the regular EQ-5D-5L with a 'today' recall period and a disease-specific HRQOL measure. The following month, the same patients completed the same questionnaires with the addition of the experimental EQ-5D-5L 'last month' recall or ‘last time you experienced the illness and the General Health Questionnaire (asking whether there was any difference in their health between the two data collection points). For the EQ-5D-5L, we calculated the EQ-VAS, utility score (using Indonesian value set), and level sum score (LSS). T-test analyses were performed for EQ-VAS score and utility, and Wilcoxon matched-pairs signed-rank test was performed for the LSS median scores between different recall time and/or data collection. In total, 205 patients completed the questionnaires in two time points: 74 Tuberculosis, 72 Type 2 Diabetes Mellitus, 40 HIV/AIDS, 75 Asthma, and 44 Chronic Skin Disorders patients. There were no missing items, which is an indication of the excellent feasibility of all the questionnaires. EQ-5D-5L scores using recall time of today were equal between two data collection times (one month interval) in the Tuberculosis, Type 2 Diabetes Mellitus, and Asthma groups, but not the other groups. For the three chronic illness groups, their scores on the past month (measured in the second time of data collection) were similar to their scores in the first data collection, a month ago, but different with their scores of the second data collection day. In the Asthma and CSD groups, patients HRQOL of the time they last experienced the illness were significantly lower than their health states in the two data collection sessions measured by the recall time of ‘today’. Regarding patients’ preference of recall time, patients’ preferences of the two recall times were similar. For the chronic illness groups, majority of patients prefer to recall 'today' to better capture their HRQOL. Therefore, one should be aware of the time frame when administered different HRQOL questionnaires (such as the generic and disease-specific) simultaneously. | Fredrick Purba | Descriptive Systems | 35600 | Ongoing | 2019 | 2024 |
| 20190020 | QALY MICI (IBD QALY) | QALY-MICI (IBD QALY) is a prospective observational transversal survey, the primary objective of which was to collect health states using EQ-5D-5L in the French context for patients who suffer from Inflammatory Bowel Disesase (IBD: Crohn’s disease and Ulcerative Colitis) and to provide utility values based on the French Value 5L set. EQ-5D data was associated to data on history of disease, past treatments, current treatments, activity scores. Socio-demographic data include type of activity and occupation, as well as size of residential area. EQ-5D data are compared to a specific QoL questionnaire for IBD, the Short Inflammatory Bowel Disease Questionnaire (SIBDQ). | Gerard De Pouvourville | Descriptive Systems | 15000 | Completed | 2019 | 2019 |
| 20180470 | Chronic disease, co-morbidities and health-related quality of life in a representative sample of the New Zealand population | Earlier this year a provisional New Zealand EQ-SD-SL value set was developed using a valuation method (PAPRIKA) not previously used in this area (the results of which were presented at the Lisbon meeting). A strength of the method is that it generates complete personal value sets enabling the health-related quality of life (HRQoL) preferences of individuals to be explored, as well as for subgroups of the population. Chronic health conditions are associated with increasingly high rates of morbidity (and mortality) and rising inequality. Therefore, exploring the relationships between chronic disease status and HRQoL is of value, particularly for health professionals and policy-makers. In this study we will use the EQ-SD-SL personal value sets from the representative New Zealand sample to examine the health preferences of people who have at least one chronic health condition. Firstly, as mentioned at Lisbon, the provisional EQ-50-SL value set (n=2270) will be refined to produce a final EQ-50-SL social value set. Then the demographic characteristics, preferences and self-reported health status of participants who live with a chronic health condition will be described using the final EQ-50-SL social value set. Using cluster analysis, participants will be grouped into 'clusters' of chronic disease categories and common co-morbidity groups, and a multinomial response model will be estimated to determine whether the patterns in people's preferences vary systematically according to chronic disease status. | Trudy Sullivan | Valuation | 9700 | Completed | 2019 | 2019 |
| 20180310 | Non-parametric approach to valuing the EQ-5D-5L | In this study we compare a set of methodologies for generating value sets across EQ-VT survey data from eight countries. Across countries a variety of estimating specifications are present in the literature, here we seek to investigate the impact of these different specifications, and consider whether a uniform specification might be possible. We included the EQ-5D-5L valuation study data from 8 countries including Canada, China, Germany, Indonesia, Japan, Korea, Singapore, and The Netherlands. We first used a set of standard parametric models frequently encountered in the literature, including the main effects model with and without additional interaction terms, Left-censored model with individual random effects, 8-parameter model using individual country’s data. We also pooled all countries’ data and used the same parametric models. Three types of non-parametric models were used: 1) optimal bandwidths using individual country's data and kernel smoothing using individual country's data (denoted NP models); 2) optimal bandwidths using pooled data and kernel smoothing using pooled data (denoted NPU models); and 3) optimal bandwidths using pooled data and kernel smoothing using individual country’s data (denoted NPUc models). All models were compared on the basis of goodness of fit statistics, mean absolute error (MAE) and root mean squared error (RMSE). Value sets were generated for each country using each model. Bland-Altman critical differences were generated to evaluate the difference from the value set generated using the model with the lowest MAE and RMSE for each country. Compared to the parametric models, the nonparametric models improved model goodness of fit across countries. The nonparametric model using the bandwidth optimized based on individual country’s valuation data performed slightly better than the nonparametric model pooling all countries’ data. | Feng Xie | Valuation | 28600 | Completed | 2018 | 2019 |
| 20180670 | EQ-5D-3L as an outcome indicator: analysis of its performance in a longitudinal study of patients receiving palliative care | It is well recognised that quality of life as measured by patient-reported outcomes (PROs) deteriorates near the end of life. This deterioration can be captured using the EQ-5D-3L, however, the extent to which the EQ-5D-3L dimensions and EQ-VAS are prognostic in advanced incurable cancer is unknown. This project encompassed three elements: - Using a simple prognostic model we demonstrate that the EQ-5D-3L self-care dimension alone can replace clinician-assessed performance status in predicting survival in advanced incurable cancer with bone metastases. Further, we illustrate that whilst the prognostic value of the self-care dimension is greatest for those with short survival, this diminishes in those with longer prognosis. Conversely the EQ-VAS offers greater prognostic separation at these later time points. The optimal measures for inclusion in future models will need to optimise model performance in line with the time points relevant to the clinical decision problem. - A one day inter-disciplinary workshop was convened to build a consensus on the use and challenges to including PROs in prognostic and predictive modelling in cancer care. Our consensus highlights the crucial need, particularly relevant in PRO models, to identify the decision problem and consider challenges of implementation at the earliest possible stage in model development. Beyond this we highlight key challenges to PRO capture in routine care and consider the impact of these challenges on prognostic and predictive models. - Finally, using longitudinal EQ-5D-3L data from patients undergoing palliative radiotherapy for bone metastases, we identify how the relationship between the EQ-5D-3L dimensions and the EQ-VAS changes with proximity to death. This analysis informs the wider discussions about the need to reconsider the evaluative space when appraising care outcomes for patients near the end of life. | Katie Spencer | Populations and Health Systems | 17532 | Completed | 2019 | 2019 |
| 20180450 | Extending the QALY – Psychometric testing of the items in Germany to support the item selection for the new measure | Objectives: The “Extending the QALY” (E-QALY) project aims to develop a broad measure of quality of life for application in economic evaluation in both health and social care. Subsequent to the face validation phase (stage 3 in the E-QALY project), the aim of this study was to conduct the psychometric testing of E-QALY candidate items based on data collected from German respondents to help inform the international selection of items for a longer E-QALY profile measure and a short classifier. Methods: An online survey was conducted using an online panel of people in Germany. We targeted cancer patients, carers and a healthy comparator group, where conditions were based on self-reports. The survey included 66 E-QALY items and the EQ-5D-5L, EQ-5D-3L, S-WEMWBS and EORTC QLQ-C300 instruments. Statistical analysis was conducted in accordance with the international psychometrics protocol developed in Sheffield. This includes classical psychometric analysis, such as analyses of inconsistencies and response distribution as well as analysing sensitivity to known-group differences. The domain structure was explored using exploratory and confirmatory factor analysis. Item response theory (IRT) analyses were used to assess item performance; this included differential item functioning (DIF), item fit and testing for local independence. Results: Overall, 496 participants were used in the analysis after excluding six respondents for inconsistencies. In total, 67% were identified as having a long-term condition, with 40% having cancer. In addition, 56% (n=280) reported to be a carer. The majority of items did not show problems with floor or ceiling effects, which were not justifiable by the sample. Items were able to discriminate between respondents with physical or mental health conditions and a healthy comparator group with moderate to large effect sizes, while smaller effect size were found for carers. Exploratory factor analysis indicates the need for a bi-factor model to account for positively and negatively worded items along the themes. The conceptual model was reasonable well confirmed on the German data using confirmatory factor analysis. IRT results suggested that most items had well-functioning response categories, few occurrences of item misfit or local independence within sub-domains, but with some problems with differential item functioning in many items. Conclusion: Derived from the findings of this study and based on the item performance, recommendations were made on the inclusion of items to be included for the E-QALY longer profile measure and the short classification system. | Wolfgang Greiner | Descriptive Systems, EQ-HWB | 16900 | Completed | 2019 | 2019 |
| 20180630 | ’Equimetrics’ of the EQ-5D. Measuring inequalities in health in the UK, Netherlands, and Italy to assess the potential of the EQ-5D-3L and 5L as outcome measures and determinants of income inequality | Background: In datasets used for health inequality analysis, the selected indicators tend to have been used for decades: functional limitations, disabilities, and a simple subjective health evaluation. Little attention has been paid to consequences of using 'self-rated health' as an indicator to assess inequalities in health. Aims: The Equimetrics Project aimed to explore the potential of the EQ-5D-3L and EQ-5D-5L as outcome measures in health inequality analysis. We determined if there were differences in health status by country and by socio-economic status (SES) and by other stratifiers, such as gender and chronic disease status. We also compared the performance of the EQ-5D-3L and 5L in health inequality analysis. Methods: Data were collected from a multi-country cohort using a web-based survey that was administered to members of the general public aged 18 to 75 years from three European countries (United Kingdom (UK), Italy and the Netherlands). The survey included questions on sociodemographics, chronic disease and the EQ-5D-3L, EQ-5D-5L, EQ VAS, QOLIBRI-OS. We compared health-related quality of life (HRQL) across strata, such as SES, country, gender and disease groups, but also across measures (EQ-5D-3L, EQ-5D-5L, EQ VAS, QOLIBRI-OS). In addition, we calculated the slope index of inequality and relative index of inequality by country and by measure. Results: In total, 10,172 respondents completed the survey. Of these, 4,119 respondents were from the UK, 3,026 were from Italy and 3,027 were from the Netherlands. For each measure (EQ-5D-3L, EQ-5D-5L , EQ VAS and QOLJBRI-OS), HRQL was best for respondents from Italy and worst for respondents from the UK. Across countries, the UK had highest inequality with worse HRQL among those with a lower educational level and best HRQL among those with a high educational level, both for the total sample and stratified by gender. We observed the lowest inequality among respondents from Italy. For the EQ VAS and QOLIBRI-OS, country, gender and educational level patterns were mixed. The EQ-5D-5L outperformed the EQ-5D-3L in terms of ceilings (higher for EQ-5D-3L versus EQ-5D-5L) and absolute informativity. Conclusions: With regards to inequality analysis, the EQ-5D-5L showed larger contrasts compared to the EQ-5D-3L. However, these contrasts were smaller than expected. Most importantly, our study showed that EQ-5D instruments are suitable for assessing health inequalities in general population samples. | Juanita Haagsma | Populations and Health Systems | 69700 | Completed | 2019 | 2024 |
| 20190260 | Budget transfer from international Psychometric surveys to TUOS | Data collection budget to test the psychometric performance of candidate items for the EQALY measure. Linked to projects: 20180600, 20180580; 20180520; 20180460 and 2018 0450 | Tessa Peasgood | Descriptive Systems, EQ-HWB | 76216 | Completed | 2018 | |
| 20180350 | Extending the QALY Valuation Study in the UK: A feasibility study of applying different valuation methods to a health and wellbeing classification system | OBJECTIVES: The aim was to assess whether existing valuation methods were suitable for the nine item EQ Health and Wellbeing Short (EQ‐HWB‐S). METHODS: EuroQol Portable Valuation Technology (EQ‐PVT) which uses composite time trade‐off (cTTO) and discrete choice experiments (DCE) was modified for the EQ‐HWB‐S. Volunteer non‐academic University of Sheffield staff were recruited. A mixed methods approach involving qualitative interviews and assessment of quantitative data was used to assess the applicability and feasibility of EQ‐PVT to EQ‐HWB‐S. Participants valued six states using cTTO (three EQ‐HWB‐S and three EQ‐5D‐5L) and four EQ‐HWB‐S states using DCE. RESULTS: Nineteen participants with mean (SD) age 48.2 (13.0) were interviewed. Mean TTO values were ordered as expected with higher mean values for the mild EQ‐HWB state compared to the moderate and severe states. Most participants found it fairly or very easy to understand cTTO questions for both EQ‐HWB‐S 94.7% (18/19) and EQ‐5D 89.5% (17/19). Pain, activities and depression were considered key drivers for respondents’ choices. Additional information in the EQ‐HWB‐S was useful in helping to imagine what life would be like but it could also be overwhelming and make the tasks difficult. ‘Coping’ was a problematic item as it was either used as an overall assessment of the state or ignored in favour of participants’ perceived ability to cope with the state. ‘Coping’ was replaced with ‘control’ which did not have the same problems. Participants generally preferred DCE to TTO. DCE presentations with overlap but with simple formatting were preferred. CONCLUSIONS: A modified standardised valuation has been successfully applied to health and wellbeing states defined by the EQ‐HWB‐S. A full feasibility study is now required. | Tessa Peasgood | Valuation | 48775 | Completed | 2019 | 2020 |
| 20180770 | An EQ-5D-5L value set for the Swedish population | The aim of this proposal is to develop a Swedish value set for EQSD-SL. We will do it by using standard data collection methods developed by the EuroQol group. Participants will be recruited in four regions in north, south and central of Sweden. Rural and urban participants will be included. 20% will be over 65 years and 80% in working age. Age, gender and rural/urban will reflect the Swedish population. The 800 informants will answer cTTO- and DCE-questions in face-to-face interviews. PI will conduct first 50 interviews before the training of interviewers. Training of 12 interviewers will be conducted according to EuroQol procedures. The analysis will have the possibility to use both TTO and DCE data (hybrid model) | Klas Goran Sahlen | Valuation | 80000 | Completed | 2019 | 2021 |
| 20180260 | Testing the robustness of the German EQ-5D-5L value set for people with health impairments | Objectives: The national EQ-5D-5L value set for Germany is based on the average preferences of the general population. However, in Germany, there is an ongoing debate about the appropriateness of using general population preferences and whether patient preferences should be used instead. Therefore, the research study used the data from the German EQ-5D-5L valuation study and checked the published German value set for robustness against health impairments. Methods: Subgroups were built on the self-reported health measured by the EQ-5D-5L. To identify groups which significantly influence the value set model, different regression models were tested while controlling for preference heterogeneity. Backward selection based on the akaike information criterion (AIC) lead to significant subgroups analyzed in more detail. For each significant subgroup the value set model was separately estimated and comparison between models was done. Socio-demographics of the subgroups have been considered. Results: Three significant dummies were identified: health state 11111, severity level 5 to 7 and reported problems in dimension pain/discomfort. The six resulting value sets of the subgroups were compared to the national German EQ-5D-5L value set. It turned out, that there are only marginal deviations. The mean absolute deviation had a range from 0.004 to 0.013. No different densities were identified for the decrements from the different value sets. Control for socio-demographics did not change the results. Conclusions: People with self-reported health impairments do not have different EQ-5D-5L health state preferences than the German general population in general. Further research is needed if the ‘chronification’ of a health impairment to a chronic disease, leads to valuing health states differently by patients and the general population. | Wolfgang Greiner | Valuation | 14400 | Completed | 2018 | 2019 |
| 20180730 | Validation of the UK English version of EQ-5D-Y-5L in South Africa | Background:The standard EQ-5D-Y-3L has been used since it’s development in 2010 to measure health in the general population and in clinical samples in South Africa[1]–[4]. There have been concerns regarding the ceiling effects and whether the three-level response options are sensitive enough to changes in health. The EuroQol Foundation’s Younger Populations Working Group has recently developed a new version of the EQ-5D-Y with fivelevels of severity in each EQ-5D-Y dimension. The increased level descriptive system, the EQ-5D-Y-5L, has not yet been fully tested for validity or reliability in children between eight and 15 years. Aim:To assess reliability and validity of the UK English version of EQ-5D-Y-5L, in children and adolescents aged eight to 15 years in South Africa. Methods:Participants willinclude children and adolescents who areAcutely Ill (AI), Chronically Ill (CI) (with disease specific groups) and children of the General Population (GP) aged 8-15 years. In a large sample of childrenand adolescents, the construct validity of the EQ-5D-Y-5Lwill be established by comparing the results obtained to those from the PedsQLgeneric module.The known group validity will be established by comparison of results between Ill (AI andCI)and GP children. The discriminant validity will be determinedby comparing the EQ-5D-Y-5L scores within AI, CI and GP children who according to their classification on the self-rated health scale as well as within a sub-groups of chronically-ill children(with Cerebral Palsy)who are classified as mild, moderate or severe. Test-retest reliability will be established in the responses of the EQ-5D-Y proxy administered one day apart in group of childrenand adolescents from the GP and who have a stablechronicillness. Responsiveness will be explored through test/retest of AI childrenand adolescents at baseline and after24 and72 hours. | Janine Verstraete | Youth | 45680 | Completed | 2019 | 2020 |
| 20180490 | Test of the minimal number of C-TTO states in the valuation protocol of the EQ-5D-3L-Y | Background and Objectives Methods for estimating health values in adult populations are well developed, but lag behind in children. The EuroQol standard protocol to arrive at value sets for the youth version of the EQ-5D-Y-3L combines discrete choice experiments with ten composite time trade-off values. Whether ten composite time trade-off values are sufficient remains to be seen and this is one of the reasons the protocol allows for experimental expansion. In this study, 23 health states were administered for the composite time trade-off. This methodological research is embedded in a study aimed at generating a representative value set for EQ-5D-Y-3L in Indonesia. Methods A representative sample of 1072 Indonesian adults each completed 15 discrete choice experiment choice pairs via face-to-face interviews. The discrete choice experiment responses were analysed using a mixed-logit model. To anchor the discrete choice experiment values onto the full health-dead quality-adjusted life-year scale, composite time trade-off values were separately obtained from 222 adults living in Java for 23 EQ-5D-Y-3L states. The derived latent discrete choice experiment values were mapped onto the mean observed composite time trade-off values to create a value set for the EQ-5D-Y-3L. Linear and non-linear mapping models were explored to estimate the most efficient and valid model for the value set. Results Coefficients obtained from the choice model were consistent with the monotonic structure of the EQ-5D-Y-3L instrument. The composite time trade-off data showed non-linearity, as the values for the two worst states being evaluated were much lower than predicted by a standard linear model estimated overall composite time trade-off data. Thus, the non- linear mapping strategies with a power term outperformed the linear mapping in terms of mean absolute error. The final model gave a value range from 1.000 for full health (11111) to − 0.086 for the worst health state (33333). Values were most affected by pain/discomfort and least by self-care. Conclusions Our study presents the first EQ-5D-Y-3L value set for Indonesia based on the stated preferences of adults asked to consider their views about a 10-year-old child. Mapping the mixed-logit discrete choice experiment model with the inclusion of a power term (without a constant) allowed us to generate a consistent value set for Indonesian youth. Our findings support the expansion of the composite time trade-off part of the EQ-5D-Y valuation study design and show that it would be wise to account for possible non-linearities in updates of the design. | Titi Fitriani | Valuation, Youth | 29609 | Completed | 2019 | 2020 |
| 20180620 | Validation and Comparison of the Psychometric Properties of the EQ-5D-3L-Y and EQ-5D-5L-Y in the United States | Aim:The psychometric properties of the EQ-5D-3L-Y and EQ-5D-5L-Y in the United States are unknown.The aims of this study are to 1)test the psychometric properties (including feasibility, reliability, and validity) of the EQ-5D-5L-Y in children and adolescents with arthritis and leukemia and 2)compare the psychometric properties (including feasibility, redistribution, discrimination, and validity) of the EQ-5D-3L-Y and EQ-5D-5L-Y in children and adolescents with arthritis and leukemia.Methods:This study will recruit a total of 400 children and adolescents, including 100 patients with arthritis, 100 patients with leukemia, and 200 healthy individuals.Children and adolescents with arthritis and leukemia will be recruited from hospitals. Healthy individuals will be recruited from schools and matched with patients byage, gender, and race.Study participants will be asked to complete the survey in the order of 1) EQ-5D-5L-Y, 2) PedsQL, 3) self-rated health, 4) demographic questions, and 5) EQ-5D-3L-Y.They will be invited to complete the second survey seven to ten days after the baseline survey.The psychometric properties of the EQ-5D-5L-Ywill be tested through feasibility(using missing values), reliability(using Cohen's kappa statisticandintra-class correlation coefficient), convergent validity(using Spearman's rho), and known-groups validity(using a priori hypotheses). The psychometric properties of the EQ-5D-3L-Y and EQ-5D-5L-Ywill be compared through feasibility(using missing values and ceilingeffects), redistribution(using consistent response pairs), discrimination(using Shannon index and Shannon Evenness index), convergent validity (using Spearman's rho), and known-groups validity (using a priori hypothesesand relative efficiency statistic). | Minghui Li | Youth | 29200 | Ongoing | 2019 | 2023 |
| 20170520 | Development of health-related quality of life (EQ-5D-5L) value set for India | The present study aims to develop EuroQol five-dimensional (EQ-5D-5L) health states value set for Indian population. A cross-sectional survey using the EuroQol Group’s Valuation Technology (EQ-VT) software will be undertaken in representative sample of 2700 respondents.The respondents will be selected from 12 districts in 6different states of India using a multistage stratified random sampling technique.The participants will be interviewed in a face to face setting using CAPI (computer assisted personal interviewing) technique. Time trade off (TTO) valuation will be done using 10 composite (cTTO) tasks and 7 discrete choice experiment (DCE) tasks.The demographic data will be analyzed by descriptive statistics. TTO values will be modeled using main effects model that will includeconstant and 20 main effectsderived from the EQ-5D-5L descriptive system, using ordinary least squares (OLS)and tobit models. The DCE data will be modeled under random utility using the conditional logit model. Hybrid modeling approach using both c-TTO and DC data to estimate the potential value setwill be applied. This method will combine the utility values elicited in the c-TTO for the 86 health states with utility values elicited in the DC experiment for 196 pairs of states. Sensitivity analysis will be conducted to explore the impactof severely inconsistent responders.Value set for EQ-5D-5L health state will be estimated for the Indiangeneral population. This will be helpfulin clinical practice/research for better monitoring of health-relatedquality of life. The scores can be used as an important input that better reflect Indian population’s preference for health technology assessment research. In addition, the results can be used for international comparison in order to understand similarities and differencesof health preference across populations. | Shankar Prinja | Valuation | 0 | Completed | 2017 | 2019 |
| 20180290 | Generation of an EQ-5D-5L value set for the Mexican population | Aim: To develop an EQ-SD-SL value set for the Mexican general population. Background: There is strong interest in using EQ-SD-SL to support decision making in Mexico, for two reasons. First, HTA processes are used by the General Health Council of Mexico (CSG) to determine which new technologies are recommended for funding. To date, HTA has relied mainly on cost per life year gained and this is to be extended to include quality of life and QALYs. Secondly, the Mexican Secretariat of Health has as one of its main responsibilities monitoring of health care quality provided by public and private organizations. The General Directorate of Quality and Health Education, (DGCES) is in charge of such monitoring. Since 2013, the DGCES has been actively participating in the OECD Health Care Quality Indicators project. The DGCES has a well-established monitoring system based upon indicators that measure several aspects of health care quality from the provider perspective (DGCES, 2018) and wishes to extend that to include patient reported outcomes. An EQ-5D-SL value set for Mexico is required to support both uses of the EQ-SD-SL. Methods: The study will use the EQ-VT protocol and data quality monitoring processes that have emerged as best practice from previous value set studies. Value sets will be modelled from TTO data, DCE data, and both data combined via hybrid modelling. Deliverables: The principal deliverable will be a manuscript reporting the value set. Timelines: The project is planned to commence in September 2018 and to last for 18 months. | Cristina Guttierez | Valuation | 0 | Completed | 2018 | 2020 |
| 20180300 | Development and psychometric testing of EQ-5D-5L bolt-on descriptors for vision and cognition: A study in the UK and Australia | The use of ‘bolt-on’ descriptors has been proposed to improve the sensitivity and responsiveness of the EQ-5D in certain contexts. The Descriptive System Working Group (DSWG) hascalled for proposalsto progress the bolt-on agenda by focussing on two areas, namely cognition and vision. However, to date, there has been limited research to develop appropriate descriptors using qualitative research or comprehensivepsychometric testing. The aim of this project is to identify vision (5L-Vis) and cognition (5L-Cog) bolt-on descriptors for the selfand proxy-completed adult versions of the EQ-5D-5L, using qualitative and quantitative methods. All stages of the researchwill include people with different types of experience of visual or cognitive impairment, including patients and carers. Phase 1 of the study will involve a literature review and the conduct of a series of focus groups. The purpose of Phase 1 is to identify relevant concepts and terminology in the definition of health-related quality of life with respect to visual impairment and cognitive impairment. In Phase 2, candidate descriptors will be administered in qualitative interviews. Cognitive debriefing willbe used to assess the acceptability and face validity of the bolt-ons. Phase 3 will entail quantitative analyses of data from a large sample to assess the psychometric properties of the selected 5L-Vis and 5L-Cog bolt-ons, using classical psychometric anditem response theory methods. The research will identify vision and cognition bolt-ons that can beappended to the EQ-5D-5L descriptive system andaresuitable for valuation and further testing. | Brendan Mulhern | Descriptive Systems | 118785 | Ongoing | 2019 | 2024 |
| 20180170R1 | Evaluation of routinely Measured PATtient reported outcomes in HemodialYsis care (EMPATHY) Trial: A Cluster Randomized Controlled Trial | The data collected for this project was used for 2 analyses: 1) to examine how the routine use of PROMs (including the EQ-5D-5L) influences patient-clinician communication in in-centre hemodialysis units in Northern Alberta and; 2) to describe the burden of depressive and anxiety symptoms reported by adults on in-centre hemodialysis in Northern Alberta, using PROMs, and understand patients’ and nurses’ perceptions of managing such symptoms. Both analyses employed a concurrent, longitudinal, mixed-methods research design. The quantitative data came from a multi-centre cluster randomized controlled trial (a separately funded study) of 17 hemodialysis units in northern Alberta that introduced a PROMs intervention. Patient-clinician communication was assessed using a modified Communication Assessment Tool (CAT). Depressive and anxiety symptoms were assessed using the Patient Health Questionnaire - 2 item (PHQ-2) and Generalized Anxiety Disorder - 2 item (GAD-2), respectively. Using purposeful sampling, patients and nurses were invited for interviews. Field notes were documented from dialysis unit observations. Patients’ responses to open-ended survey questions and nurses’ electronic chart notes related to mental health were compiled. Thematic and content analyses were used. For analysis 1, PROM use did not substantively improve patient-clinician communication. There was a small positive change in mean total CAT scores (range 1-5) from baseline to 12-months in PROM use units (0.25) but little difference from control group units that did not use PROMs (0.21). The qualitative findings provide in-depth insights into why PROM use did not improve patient-clinician communication; the purpose of PROM use was not always understood by patients and clinicians; PROMs were not implemented as originally intended in the trial, despite clinician training; PROM completion was seen to challenge communication; and PROM use was perceived to have limited value. For analysis 2, 29% screened positive for depressive symptoms, 21% for anxiety symptoms, and 16% for both. From patient (n = 10) and nurse (n = 8) interviews, unit observations (n=6), patient survey responses (n = 779) and nurses’ chart notes (n = 84), we discerned that PROMs (ESAS-r: Renal/EQ-5D-5L) had the potential to identify and prompt management of mental health concerns. However, opinions differed about whether mental health was within kidney care scope. Nonetheless, participants agreed there was a lack of mental health resources. | Jeffrey Johnson | Populations and Health Systems | 46983 | Completed | 2018 | 2020 |
| 20180070R1 | Use EQ‐PVT to develop a cancer patient preferences based EQ‐5D‐5L value set | Objectives: To assess the feasibility of estimating an EQ-5D-5L value set using a small study design in cancer patients and to cross-compare the EQ-5D-5L health state preferences of cancer patients with those of the general public in China. Methods: Patients with clinically diagnosed cancers were recruited from two hospitals in Shanghai, China. In face-to-face interviews using the EQ-PVT survey, 31 health states (divided into three blocks) and 80 pairs of health states (divided into eight blocks) were valued by the cancer patients using the cTTO and DCE methods, respectively. cTTO data was modelled alone or jointly with DCE data. Forty-eight models using different model specifications (cross-attribute level effect [CALE] and additive models), model assumptions for effects (random/fixed), data heteroscedasticity (yes/no), and censoring (yes/no) were estimated. The best-performed model was identified in terms of monotonicity of estimated model coefficients and out-of-sample prediction accuracy. Results: Data of all the 221 cancer patients who participated in the study were included in this analysis. The hybrid CALE model using both the TTO and DCE data performed better in terms of prediction accuracy (Lin’s concordance coefficient=0.989; root mean squared error=0.058). Compared to the Chinese general population, the EQ-5D-5L value set based on cancer patients’ preferences were higher except for health states characterized by severe or extreme pain/discomfort. The rank of dimensional importance based on the general population was mobility (0.303), pain/discomfort (0.266), anxiety/depression (0.227), self-care (0.222) and usual activities (0.205), while in cancer patients, the order was pain/discomfort (0.421), anxiety/depression (0.267), mobility (0.262), usual activities (0.212) and self-care (0.211). Conclusion: This study demonstrated the feasibility of using a small design for developing EQ-5D-5L value sets based on cancer patients’ health preferences. Since there were signs of differences between the preferences of cancer patients and general public, it may be valuable to develop patient-specific value sets for use in clinical decision-making and economic evaluation. | Zhihao Yang | Valuation | 10250 | Completed | 2018 | 2019 |
| 20180130 | The EQ-5D-5L valuation study in Egypt | Background: Egypt, the most populous country in the Middle East, has a population of 96.7million citizens, residing in 27 governorates. It is classified as a low- middle income country. No value set exists for either EQ-5D versions in Egypt or other Arabic speaking countries. Using other countries utility values carries some risks in not representing the views and preference of the Egyptian population. Aim: To develop a value set for the EQ-5D-5L based on societal preferences in Egypt to be used in economic evaluation studies and to support resources allocation decisions. Methodology: The valuation protocol will be administered using the EuroQol Group valuation technology (EQ-VT-2.0). The adult Egyptian participants will be recruited from different Egyptian governorates representing all geographical areas of the country as per the population distribution. Participants will be recruited through personal contact and from public places like shopping malls, university campuses, governmental authorities, parks and sports facilities using multi stratified quota sampling to select a representative sample in terms of age, gender, education and residence (urban/rural). Written informed consent will be obtained from all participants. The interview will take place at the interviewer’s office or the participant’s work place or home depending on the participant’s preferences. | Samar Farid | Valuation | 0 | Completed | 2018 | 2020 |
| 20180150 | Furthering the DCE research agenda: Comparing anchoring and design methods for the valuation of EQ-5D | Objectives The DCETTO is a popular method to create value sets for the EQ-5D. There are two main approaches to the DCETTO, where either immediate death or full health for a shorter duration is included as the third option in a choice set. There are also two main DCETTO choice set construction methods i.e. generator-developed or efficient DCE designs. There is a lack of studies that directly compare the two approaches and two construction methods and their impact on value sets. It is also unclear whether alternative methods would have an impact on nonlinear time preferences and whether the impact would vary in value sets from different countries. This study seeks to investigate these issues. Methods A 4-arm study was used to provide a comparison of the two approaches and two choice set construction methods of the DCETTO. This was tested in a sample of respondents from Peru (n = 942) and Denmark (n = 988). Results There was evidence that DCETTO approach and construction method can impact value sets, particularly for more severe health states. Respondents generally exhibited nonlinear time preferences. Results were noted to be more variable in the Peruvian data set. Conclusion This is the first study to provide a comparison of the two commonly used DCETTO approaches and associated construction methods in valuation studies across two countries. Efficient DCE designs had slightly better performance across arms but require priors and are less convenient than generator-developed designs. Directions for future research are discussed. | Brendan Mulhern | Valuation | 14800 | Completed | 2018 | 2024 |
| 20180190 | MSc student project placements on a EuroQol-related topic | By re-analysing data initially collected to generate the EQ-5D value set in Britain, we aimed to identify the effect of health-related experience on the preference for health states. Aligned with a recent framework that classified experience as either personal (past, present, and future) or vicarious (affective and non-affective), dummy variables were coded from a battery of experience-related questions directed at each respondent. In the first step, the association between all five measures and the valuation of EQ-5D states via time trade-off (TTO) methods was explored using a linear regression model applied to the original Measuring Value in Health (MVH) dataset containing 36,849 valuations. Control variables included a variety of demographic and socioeconomic variables. Furthermore, the causal effect of past or present personal experience and the affective vicarious experience was tested using a fixed effects model in a panel dataset that consisted of responses from a subgroup of the MVH respondents who participated in a Re-test approximately ten weeks after the first interview. This dataset contained 2,579 valuations from 214 individuals in each interview. Exploring the association of five experience measures in the original MVH dataset showed no stable, statistically significant association between the experience measures and the response variable. The analysis of the panel data using a fixed effects model did not result in statistically significant results either. However, present personal experience at the point of valuation led consistently to, on average, higher valuations of health profiles. The effect of vicarious and past personal experience was less clear. We could not quantify any causal effects of experiences with severe illnesses on the valuation of health states that were statistically significant on the 0.05 level. However, the general direction of the effects seemed to align with the theory, and it is likely that non-significant effects in our results were a result of the small sample size. Further research and better data is required. | Patricia Cubi-Molla | Valuation, Education and Outreach | 7100 | Completed | 2018 | 2018 |
| 20180160 | Testing 4 cognition bolt-on items in a community dwelling elderly group | Objectives This study aimed to evaluate the psychometric properties of four candidate cognition bolt-on items and their combinations to the EQ-5D-5L. Methods Four cognition items (concentration, memory, calculation, and learning) were developed as separate questionnaire items, and were administered with the standard EQ-5D-5L to 640 individuals in a general population survey in China. From 4 items, 11 compound items were constructed, and the ‘worse level counts’ rule was used to achieve a compound item score. Psychometric performance of the cognition bolt-ons was assessed in terms of informativity, convergent validity, explanatory power, and discriminatory power. Results The tested four cognition bolt-on items improved informativity, convergent validity, explanatory power and discriminatory power of EQ-5D-5L, with calculation and learning yielding better psychometric performance. The compound bolt-on items that cover a range of cognitive functions demonstrated superior psychometric performance compared to single-aspect bolt-on items, with those items covering calculation and learning resulting in better psychometric performance. Conclusion This study confirmed the validity of the tested cognition bolt-ons in a general Chinese population. It supported the use of a compound bolt-on item covering a range of cognitive functions such as ability to calculate and learn. | Nan Luo | Descriptive Systems | 16000 | Completed | 2018 | 2019 |
| 20180040R1 | NA | Relative to other countries, Bermuda has achieved above-average performance on several health indicators. Despite this, the health system in Bermuda faces some challenges. These include high levels of expenditure on healthcare, rising prevalence of non-communicable disease and inequality in access to healthcare. The Ministry of Health of Bermuda has outlined a strategy for dealing with these challenges over the medium term. A decision has been taken to create an EQ-5D value set for Bermuda which can support policy and clinical decision-making by allowing at the policy level: economic evaluation of health interventions and programmes, measuring burden of disease, and tracking health inequality. At the clinical level EQ-5D can be used to monitor and track patients’ health outcomes through a treatment or an illness and to compare the performance of healthcare interventions. EQ-5D is used for these purposes in many countries and is recommended by the National Institute for Health and Clinical Excellence (NICE) in the United Kingdom as the preferred health outcomes measure for economic evaluation. A protocol that included a Discrete Choice Experiment (DCE) and composite Time-Trade Off (cTTO) component was developed based on recent developments in EQ-5D valuation methods. 366 adults in Bermuda completed the valuation tasks in on-line interviews with an experienced EQ-5D valuation interview team in Trinidad. A bootstrapping approach was used to estimate a DCE-cTTO hybrid model based on which an EQ-5D-3L value set was created. An EQ-5D-5L crosswalk value set was developed based on the EQ-5D-3L value set. There were challenges in recruiting respondents for the survey resulting in a sample that was not fully representative of the Bermuda population in age and sex. This is due in part to the small population requiring surveys from a sample approaching 1% of the adult population. Analytical methods were employed to overcome the representativeness of the sample such that the resulting model would reflect the preferences of the adult population of Bermuda. The EQ-5D-3L value set and the crosswalk EQ-5D-5L value set created for Bermuda are presented in the Appendices. | Henry Bailey | Valuation | 0 | Completed | 2018 | 2023 |
| 20180140 | Validity, Responsiveness and Test-Retest of EQ-5D-3L-Y and EQ-5D-5L-Y and their proxy versions in Pediatric Patients in Indonesia | The EQ-5D-Y-5L was developed to address the limitation of EQ-5D-Y-3L. It is clear in adults the 5L outperforms the 3L on psychometric criteria, yet it still has to be confirmed if the 5L of EQ-5D-Y outperforms the 3L version in the same way. The aim of this study was to compare the EQ-5D-Y-5L and the EQ-5D-Y-3L self-complete version and proxy-version measurement properties and sensitivity to change in pediatric patients. The study sample consisted of 286 children and their caregivers or someone who knew the child well. The children’s medical conditions were major beta-thalassemia, hemophilia, acute lymphoblastic leukemia (AcLL), or acute illness. Data collection was done in 5 hospitals located in Jakarta and Bandung, Indonesia. Questionnaires being used were EQ-5D-Y-3L, EQ-5D-Y-5L, PedsQL Generic Core Scale, PedsQL cancer module, TranQol, and Haemo-Qol. Missing responses were comparable between the two versions of the EQ-5D-Y and between self-complete and proxy version. The number of patients in the best health state (level profile 11111) was equal in both EQ-5D-Y versions. The projection of EQ-5D-Y-3L scores onto EQ-5D-Y-5L for all dimensions showed that the two additional levels in EQ-5D-Y-5L slightly improved the accuracy of patients in reporting their problems, especially if severe. Convergent validity with PedsQL and disease-specific measures showed that the two EQ-5D-Y versions performed about equally. Test–retest reliability and sensitivity for detecting health changes, were both better in EQ-5D-Y-5L. Except for acutely ill patients, agreement between the EQ-5D-Y-5L proxy and self-reports was at least moderate | Frederik Purba | Youth | 35263 | Completed | 2018 | 2022 |
| 20170310R2 | Interval TTO valuation approach (2nd revision) | In our study, we evaluated the feasibility of interval Time Trade-Off (iTTO) as a potential TTO variant that permits response intervals rather than discrete indifference points. We aimed to determine if iTTO reduces the cognitive challenges often seen in regular cTTO (cTTO) without sacrificing data quality. In an EQ-5D-5L valuation experiment, 100 participants were randomly assigned to either cTTO or iTTO. The iTTO tasks were designed to terminate after 15 movements or when respondents cycled around a 0.1-width interval. Since the entire response paths were stored, we could explore different termination rules, specifically examining rules based on a maximum number of Iterative Steps and Interval Width (IS-IW) and the Two Directional Changes approach (TDC). Task complexity metrics were based on task completion time, movements, and participant feedback. We assessed inconsistencies and value clustering at 1, 0.5, 0, -0.5 and -1 across both arms. We assessed model performance using mean standard error, Akaike Information Criterion, and Bayesian Information Criterion though a 20-parameter hybrid model that combined cTTO and iTTO data with discrete choice experiment data from a previous study in the same population. Our findings indicate that iTTO led to faster task completion times, more movements, and enhanced self-reported comprehension. iTTO reduced value clustering with no significant differences in inconsistencies. The relative precision of models developed through both cTTO and iTTO methodologies was nearly identical. In conclusion, iTTO emerges as a promising alternative to cTTO for health state valuations. iTTO has the potential to improve participants' comprehension and efficiency in completing tasks while limiting the impact of satisficing and preserving model precision. Among the tested iTTO termination rules, we particularly recommend the TDC approach. Further research is needed to assess iTTO in diverse populations and with alternative iterative procedures. | Juan M. Ramos-Goñi | Valuation | 22375 | Completed | 2017 | 2023 |
| 20170640 | Testing the potential of multiplicative models for efficient EQ-5D bolton/off valuation study design | Prediction of bolt-on/offEQ-5D health state valuescan be based on new value sets independent of original EQ-5D value sets. Nevertheless, it would be more efficient to link bolt-ons to existing EQ-5D value sets. For this purpose, the effect of bolt-on/off items on valuation of EQ-5D dimensions should be elucidated. Previous studies found the effect of bolt-on items on valuation of EQ-5D health states was complex and failed to inform efficient valuation designs for bolt-on/off EQ-5D. Recently, multiplicative models were found to be superior to addictive models (which was used in almost all previous bolt-on valuation studies) and have been used to estimate 5L value sets. This new type of models provides a new opportunity to exploring the relationship between bolt-on/off and valuation of EQ-5D health states. The purpose of this project is to test the multiplicative models for their potential in exploring the effect of bolt-on/off items on valuation of EQ-5D health states. The specific research questions are: 1) are multiplicative models superior to the additive main-effects models for modelingvisionbolt-on (5L+VI) and self-care bolt-off (5L-SC) valuation data? 2: Are common parameters of the multiplicative models for 5L, 5L-SC and 5L+VI or ratios of the parameters constant? We propose to elicit the utility values of 30 5L, 29 5L-SC, and 31 5L+VI health states from 600 members of the general public using the c-TTO method. Each respondent will be asked to value arandom block of 5L, 5L-SC, or 5L+VI health states (n=14 to 16). Data will be modeled with both additive and multiplicative models and the model results will be examined to answer the research questions raised. | Nan Luo | Descriptive Systems, Valuation | 42300 | Completed | 2018 | 2019 |
| 20170530 | A Chinese value set for the EQ-5D-Y | The first attempts to make national value set for the EQ-5D-Y are on their way as the Exec has agreed upon proposals for Spain, the UK, the Netherlands and Germany. This valuation task arrives at a latent scale though DCE in an online sample. These value sets studies also included a methodological research question about the age dependency of EQ-5D-Y values. Age dependency was found in Spain, the UK, and Germany, but not so clear in the Netherlands. The Dutch study also assessed another methodological question of whether the relative value of life years over quality of life is related to whom the tradeoffs apply. The study found the presence of a latent variable affecting differently on the tradeoff ratios for adults and children. In the present study we developed the first comparable value set for China, and further explored the two methodological questions in China. In order to make the results compatible with the studies done in Spain, the UK, the Netherlands and Germany, we used the similar protocol, notably the Dutch and work in close cooperation with the original researchers. The Dutch study was administered using an online survey. It includes three tasks: latent scale DCE, DCE duration questions, and questions assessing preference towards different kinds of QALY compositions (e.g. 2 years in full health, or 4 years in utility of 0.5).All respondents will receive the same tasks but will be randomized into three arms for three hypothetical persons in different ages(10-years, 15-years or 40-years). Our study translated the survey into Chinese language version, and add an additonal arm (70-years) as well as localize questions (e.g. the demographic questions). The survey provided data to addressed three aims, including: 1. Derive the preliminary value set of the EQ-5D-Y for China. 2. Assess age dependency of EQ-5D-Y values 3. Explore the presence of a latent variable affecting differently on time trade-off ratios for adults and children in China | Jan Busschbach | Valuation | 14450 | Completed | 2018 | 2018 |
| 20170470 | Recent experiences using the EuroQol EQ-5D instrument In Latin America: The 3L & 5L; Public Health And Economic Evaluations; Newer Time Trade Off Variants And Discrete ChoiceExperiments | EQ-5D research has been presented in all six previous meeting of the ISPOR Latin America Consortium, starting on 2007 in Cartagena (Colombia) with two workshops: 1) HEALTH VALUATION RESEARCH IN LATIN AMERICA: AN AGENDA FOR CHANGE (Kind&Zarate), 2) EQ-5D: PERSPECTIVES AND POSSIBILITIES FOR LATIN AMERICA(Zarate&Badia&Kind&Augustovski), followed by several poster and oral presentations performedthrough the years during the followregionalmeetings.Inthe last ISPOR LA meeting, which took place inSantiago (Chile)in 2015, two EuroQol members received best oral presentations awards (Augustovsky&Zarate) for EQ-5D research performed in Uruguay and Chilei.Given thestrong influence of the EuroQol group in the Region, there have been many EQ-5D valuation studies performed in Argentina, Chile, Brazil, Uruguay, Colombia and recently in Ecuador. EQ-5D 3L has been included in national population surveys in Argentina (2005) and Chile (2016),bothinitiatives were organized by their local Ministriesof Health in each nation.Despite the steady increase of EQ-5D research, that have seen almost 100 publications related with Latin Americain Pubmedii, there are stillmany countries in Latin America where there should bea highinterest to measure and value self-perceived health, but alow level of knowledge about how to do it properly based on the best scientific evidence. For the coming 2017 ISPOR LA Regional meeting, a group of EQ-5D members and non-member hassubmitted oneworkshop and fourpresentations (one of them already selected for an award). All activitiesaim to provide crucial information to Latin American decision makers regarding the different uses of the EQ-5D instrument in Public Health and Economic Evaluation, as well as give examples of such activities performed in different countries in Central and South America.The Conference expectsclose to 1.000 attendees and we aim to cover at least 10%-20% of them by direct contactthough our fivepresentations already confirmedby the ISPOR LA ConferenceCommittee. | victor zarate | Others | 12602 | Completed | 2017 | 2017 |
| 20170330 | Psychometric validation of the Chinese version of EQ‐5D‐Y for China in three medical conditions | Aim: The Chinese version of EQ‐5D‐Y for china was not psychometrically validated. This project aimed to validate the Chinese version of EQ‐5D‐Y for China (both self-complete and proxy versions) in three populations, including school-attending children and adolescents, children with leukemia, and children with asthma. Methods: Three separate surveys were conducted. Chinese EQ‐5D‐Y-3L and EQ-5D-Y-5L questionnaires were administered to Children and their health and medical information was retrieved from health records. Parents or legal guardians of children with Leukemia or asthma were asked to complete proxy version of Y-3L and Y-5L questionnaires. Validity, reliability and responsiveness of Y-3L and Y-5L self-complete and proxy versions were assessed. Results and conclusions: Both the self-complete and proxy versions of Y-3L and Y-5L questionnaires demonstrated validity, reliability and/or responsiveness in the study samples. The studies also generated some evidence for the agreement between self-reported and proxy-reported EQ-5D-Y health outcomes. | Nan Luo | Youth | 31900 | Completed | 2017 | 2022 |
| 20170290 | Testing and comparing the Spanish version of EQ-5D-3L-Y and EQ-5D-5L-Y in general and cancer young population | The recent published version with 5 levels of response of the EQ-5D-Y need to be studied and compared to the already approved 3 levels in chronic illness Youngs. The study and the availability of the dataset in children and adolescents including severe health states are crucial to increase the variability of health states to describe and to develop the mathematical utilities and analysis required to research and clinically promote EQ-5D-Y-5L. Youngs with cancer, one of most prevalent and relevant diseases in children and adolescents, usually report severe health states. For this, the major aim of the present study was to assess and compare the psychometric properties of the EQ-5D-Y-3L and EQ-5D-Y-5L in terms of feasibility, ceiling effect, redistribution properties, informativity and inconsistence responses in children with cancer. Methods: A core set of self-report tools, including the Spanish version of the EQ-5D-Y-3L and EQ-5D-Y-5L, were administered to children drawn from the cancer population. The EQ-5D-Y-3L and EQ-5D-Y-5L were evaluated in terms of feasibility, ceiling effects, redistribution properties, differences in absolute and relative informativity. The main results were obtained from a total of 73 children (9.7 ± 2.3 years old) from cancer population who participated in the study. We included children aged 6─14 years. There were 3 diagnostic groups involved: haematological cancer (leukemia and lymphomas), solid tumours (malignant bone tumours, soft tissue and other extra osseous sarcomas, neuroblastoma and other peripheral nervous cell tumours or renal tumours) and brain tumours. No missing data in the new EQ-5D-Y-5L were visualized, so the feasibility was acceptable. The EQ-5D-Y-5L showed a low ceiling effect in all dimensions with relative changed from EQ-5D-Y-3L to EQ-5D-Y-5L between 15.3 % and 42.4% the dimensions and 44.6 % for overall system. Compared to EQ-5D-Y-3L, the EQ-5D-Y-5L provided a better distribution of the severity of the problem into the five levels of response. Absolute informativity (Shannon's index) not showed statistically significant differences between EQ-5D-Y-3L and EQ-5D-Y-5L in all dimension and overall system. To conclude, the EQ-5D-Y-5L is feasible, present lower ceiling effect and higher discriminative power than EQ-5D-Y-3L. On the other hand, the results of the current study have contributed to support the appropriateness and usefulness of EQ-5D-Y-5L as officially approved version. The dataset will contribute to develop a large dataset to further research. | Narcis Gusi | Youth | 14900 | Ongoing | 2017 | 2023 |
| 20170360 | PROMs and PREMs, their interaction: bias or added value? On the dependency between EQ5D5L (stand alone PROM), and validated PREMs in a large sample of recently delivering women, ranging from healthy to severely affected | Background EQ-5D5L rapidly disseminates as PROM, beyond the EQ-supported Canadian APERSU and the Swedish program. EQ-5D5L is often part of PROMs/PREMs datasets, with many emerging questions. Within EQ Request for Proposals, the PROM (EQ5D)-PREM relation is assigned priority: independent value of EQ5D5L is vital to its broader use, one wonders whether some PREM questions (EQ-style) could be added to EQ-5D5L, allowing at some stage combined preference measurement. The study dataset used here anticipates the compulsory Dutch national framework for perinatal outcome performance measurement, starting Jan 1, 2018 where EQ-5D5L is part of. We anticipate 1. questions on yes/no mutal casemix correction of PROMs and PREMs, and 2. the need for overall judgement scores (combining PROM and PREM), for which this study could create building blocks. Aims and research questions - General: to study in a large dataset with the mutual relationship between PROMs and PREMs, with multiple measures (=stated EQ research priority). - Specific: 1. using the health VAS scale (EQ-VAS) as overall health outcome, we will establish the role - if any - for PREM-outcomes as a added health-unrelated factor/confounder, beyond the known role of the EQ-5D5L domains and sociodemographic factors for EQ-VAS. - Specific: 2. using a 10-point quality of care/PREM scale (Picker) as overall client PREM, we establish the role - if any - for PROM-outcomes as confounder of PREM outcome, that is: a role beyond the predictive role of 8 independent, descriptive PREM domains (ReproQ-8D), detailed procedural and setting information, and sociodemographic factors on the Picker PREM scale. - Results of 1. and 2. are important for casemix decisions in using EQ5D and PREMs together. - Specific: 3. to explore systematically, per domain of EQ-5D5L (PROM) the influence (çarry-over effect) of PREM domains where it is assumed that this effect should be minimal. - Specific: 4. to test whether the interactions of 1.-3. (if any) are essentially unrelated to personal factors (deprivation) which supports straightforward use by clients of PROM and PREM data. - Methodological side aim: 5. Profiting from the unique dataset, we study - in the context of the preceding analysis - the different relation of predictors to VAS outcome in the upper vs the lower part of a VAS scale in this context in general. In pilot work, an accidental finding pointed to a general mechanism we can address. - All analyses will use EQ-MIDs as proposed by the Canadian APERSU group, and published MIDs of the PREMs used to calibrate findings in terms of 'relevant'. Data A large (n>8000) national dataset of recently delivering women, with data on PROMs (EQ5D5L, EQ-VAS, condition specific PROM mother, condition specific PROM child -via mother report), PREMs (8-dimensional WHO questionnaire called ReproQ, plus a Picker PREM score, and domain-preference. It covers about 70% of the pregnancy units in the Netherlands, and includes (after cleaning) 3800 antenatal, and 4800 postnatal responses, more than 3000 of these are paired (longitudinal). Units are available as anonymous, nominal variable. Special data feature: outcome data-triads The critical feature is that both PROM and PREM data are available in 3 operationalizations: - as a multidimensional profile (EQ5D: 5 separate domains, ReproQ-8D: 8 separate domains) - as a weighted sumscore of both profiles (preference and non preference-based) - as a VAS (EQ-VAS; Picker-10 point scale for overall process quality) Both in the PROM and PREM case, the associate VAS/scale can (but not necessarily will) cover more than the contents covered by the multidimensional descriptive profile. This feature underlies many of the unique analytical options of our study. Analysis The dataset has been prepared for 90%, as part of an ongoing fast track proposal. After datacleaning, we will apply essentially the same analytical strategy using EQ-VAS & EQ5D5L as PROM data, and Picker-scale & ReproQ 8D as PREM data, where we try to strive for a uniform protocol as this informs on perhaps mechanisms of confounding common to PROMs and PREMs. Aim 1. First we will predict EQ-VAS from EQ5D5L descriptive domain data, adding variables in blocks, as personal background, health factors (=concept-related), ending with PREM (concept-unrelated) data as candidate predictors. Main effects, interaction; multi-level analysis. This approach shows the independent minimal impact of PREMs - if any - (determinant) on PROMs (outcome). Aim 2. With reversed roles, we do the same with PREM as primary outcome: EQ-VAS for the PROM analysis is replaced by the Picker-PREM scale, while EQ-domains are replaced by their ReproQ- domains. The other covariates are the same. We start here 8 domains of ReproQ, then backrgound, then procedural information, ending with in this context unrelated health information of mother (EQ as PROM) and newborn (a specific PROM for the baby, validated). Aims 3 (and 4). With stratified analysis we will carefully compare the relations domain-wise; in some cases the PROM-PREM relation could be in part causal, while in others this is impossible. This analysis takes on board the within-PROM and within-PREM dependencies. We will explore whether casemix correction of a PROM with PREM data, and the reverse, should be considered. Aim 5 (methods): the test of scale dependency will done by stratifying the dataset into 3 (perhaps more) groups/levels according to health level / quality of care level, testing whether VAS-relations are scale-dependent with different approaches. Answers provided- Whether the EQ-5D5L instrument is suitable as stand alone maternal PROM in pregnancy care performance measurement. What bolt-on could be considered, if any. - To what extent EQ-5D5L (as a PROM) and validated PREMs provide sufficiently independent performance measures in a practical real life situation - What PREM domains can be considered to be part of an independent PREM in EQ-style, if such an option should be deemed desirable. - Whether casemix adjustment of EQ5D (as PROM) with PREMs results should be considered, and the reverse, as both measures often coincide in current performance frameworks - Methods: whether we should change the current interpretation, and analytical practice of EQ-VAS data (including experience-based studies), which assumes uniform effects of predictors across the scale. | Gouke Bonsel | Populations and Health Systems | 33350 | Ongoing | 2017 | 2023 |
| 20170230 | Estimating the EQ-5D-5L Value Set for the Philippines | The Philippine National Formulary Executive Committee, a body tasked to selecting which medicines can be bought by the Philippine government, has been conducting health technology assessments. In the past, the group uses DALYs or QALYs weighted using Thai value sets. The group would like to standardize assessments and utilize QALYs weighted using the Philippine value set. The goal of this research is to generate the Philippine EQ-5D-5Lvalue set. The value set will be estimated using the standard methodology using the EQ-VT software translated to appropriate local languages. A purposive sample of 1,720 Filipino adults will be recruited to valuate 86 health states using TTO and 196 health state pairs using DCE. Previous modelling approaches as well as the hybrid approach will be explored to generate the valuation model. An exploratory study to assess equivalence of the translated software will be also done through a survey of bilingual speakers who will valuate the same set using two different languages. | Hilton Lam | Valuation | 25080 | Ongoing | 2017 | 2024 |
| 20170280 | Revisiting EQ-5D-3L tariffs – An international collaboration between Slovenia end Portugal | Introduction: The two primary objectives were (a) to develop first logically consistent TTO based EQ-5D-3L value sets for Slovenia and (b) to revisit earlier developed VAS-based EQ-5D-3L value sets. Methods: Between September 2005 and April 2006, face-to-face interviews with 225 individuals in Slovenia were conducted. Protocols from the Measurement and Value of Health study were followed closely. Each respondent valued 15 health states out of a total of 23. Model selection was informed by the criteria monotonicity/logical consistency. Predictive accuracy was assessed in terms of the mean square difference between out-of-sample predictions and corresponding observed means, as well as Lin’s Concordance Correlation Coefficient. Results: Modelling was based on 2,717 VAS and 2,831 TTO values elicited from 225 respondents. A 6-parameter a constrained regression model with a supplementary power term was selected for VAS and TTO value sets, as it produces monotonic values, and proved superior in terms of out-of-sample predictive accuracy over the tested alternatives. Conclusion: This is the first EQ-5D-3L TTO-based value set in Slovenia and the second in Central and Eastern Europe (besides Poland). It is also the first monotonic and logically consistent VAS value set in Central and Eastern Europe. Comparisons with Polish and UK TTO values show considerable differences, mostly due to mobility with having a substantially greater weight in Slovenia. The UK value set generally produces lower values and the Polish value set higher values for mild states. | Valentina Rupel | Valuation | 15000 | Completed | 2017 | 2017 |
| 20170180 | An EQ-VT study of heart disease patients | Originally the study was aimed to investigate the impact of heart disease patients’ demographic, socioeconomic, and disease characteristics on the valuation of EQ-5D-5L health states. That is, investigate to what extent these characteristics affect differences in valuation between heart disease patients and the general population. As an EQ-5D-5L valuation study in the Singapore general population was ongoing at that time, we planned to recruit only heart disease patients and use the data from the Singaporean general population value set study to achieve the planned objectives. However, the official Singapore general population value set for EQ-5D-5L is still not available, so we decided to publish the valuation data from heart disease patients only. We still aim to compare the valuation data from heart disease patients and the general population once the official value set will be available. Below is the abstract of the publication based on heart disease patient data only. Objectives: Several studies have shown that patients with heart disease value hypothetical health states differently from the general population. We aimed to investigate the health preferences of patients with heart disease and develop a value set for the 5-level EQ-5D (EQ-5D-5L) based on these patient preferences. Methods: Patients with confirmed heart disease were recruited from 2 hospitals in Singapore. A total of 86 EQ-5D-5L health states (10 per patient) were valued using a composite time trade-off method according to the international valuation protocol for EQ-5D-5L; 20-parameter linear models and 8-parameter cross-attribute level effects models with and without an N45 term (indicating whether any health state dimension at level 4 or 5 existed) were estimated. Each model included patient-specific random intercepts. Model performance was evaluated for out-of-sample and in-sample predictive accuracy in terms of root mean square error. The discriminative ability of the utility values was assessed using heart disease-related functional classes. Results: A total of 576 patients were included in the analysis. The preferred model, with the lowest out-of-sample root mean square error, was a 20-parameter linear model including N45. Predicted utility values ranged from 20.727 for the worst state to 1 for full health; the value for the second-best state was 0.981. Utility values demonstrated good discriminative ability in differentiating among patients of varied functional classes. Conclusions: An EQ-5D-5L value set representing the preferences of patients with heart disease was developed. The value set could be used for patient-centric economic evaluation and health-related quality of life assessment for patients with heart disease. | Nan Luo | Valuation | 0 | Completed | 2017 | 2018 |
| 20170010 | Guidance on methods for analysing data from EQ-5D instruments | A complete draft of the book was completed in 2019. The deliverable from the project was a book, published by Springer in 2020, called 'Methods for analysing and reporting EQ-5D data'. Publication of the book was accompanied by a Euroqol-hosted online book launch/event where the authors presented. The book is available open access, and has been widely accessed and cited since its publication: https://link.springer.com/book/10.1007/978-3-030-47622-9. To date, the book has been downloaded 70k times, and has an altmetric score of 41; in google scholar it has 220 citations. | Nancy Devlin | Education and Outreach | 36225 | Ongoing | 2017 | 2017 |
| 20170020 | Comparison of different model specifications for the frequentist estimation of random effect hybrid | The overall aim of the proposed project is the development of a theoretical framework for hybrid models capturing intra‐person correlation and the corresponding estimation of these models within a frequentist framework using different approaches to estimate the DCE‐component of the hybrid as well as the Random Effect, respectively. The first part of the project provides an in‐depth discussion of current hybrids for the EQ‐5D and based on this existing literature develops a theoretical model specification of a hybrid model, which captures the different scales of TTO‐ and DCE‐values and accounts for intra‐person correlation. The second part of the project consists of a simulation study allowing the assessment of different methods to estimate such a Random Effect hybrid‐model and Logit‐ as well as Probit‐parts for the DCE data. The statistical and computational performances of the newly developed estimators will be compared among themselves and against existing estimators proposed in the literature and the corresponding estimation‐functions in R will be documented and made available. Regardless of the methods used for estimating the Random Effect, our implementation will be rooted in the frequentist framework which has the appeal that potential users have all familiar tests available and can interpret the model and inferential results the ‘textbook way’. | Wolfgang Greiner | Valuation | 22200 | Ongoing | 2017 | 2023 |
| 2016640 | Building values sets based on TTO results by averaging model predictions and actually observed means | To inform cost-utility analysis of health technologies, health states are assigned index values measuring their attractiveness for a given population. The values are constructed based on preference elicitation tasks. For EQ-5D-5L instruments, the index values are typically derived from time trade-off method (TTO), either alone, or in combination with discrete choice experiment (DCE). For practical reasons, only a limited number of EQ-5D-5L health states can be used in valuation studies, and extrapolations using econometric models are needed. However, also for the states valued in TTO, the index values are typically based solely on the econometric model, in this sense ignoring the actual direct observations. I aim to measure the benefits of using the direct observation in value set building. I propose a novel method of using the direct observation for neighbouring states (defined using Manhattan distance in EQ-5D-5L space) and averaging it with the econometric-model-derived values. I show it has promising statistical properties and it can help mitigate the problem of non-monotonicity of preferences which is often observed in actual valuation studies (i.e., level denoting more severe problems being assigned lower disutility). To value a given state, the direct observations of similar states are used, which helps to ac-count for the idiosyncrasies in the description of these states, e.g., interactions between select-ed dimensions. In the Bayesian setting, I show how the proposed method can also account for censoring in the TTO values as collected in standard EQ-5D-5L valuation studies. The results suggest that extending the usual design of 86 TTO states may be beneficial as it would yield more information on preferences for local regions of the space of all EQ-5D-5L states. Future studies could explore if the approach based on neighbouring states can narrow the gap between TTO and DCE results. | Michał Jakubczyk | Valuation | 23400 | Completed | 2017 | 2023 |
| 2016650 | A qualitative approach to understanding what aspects of health are important to people Ð Australian extension | This was an Australian extension to an existing project conducted in the UK. We developed and administered a survey to identify what aspects of health and quality of life are important to people in the UK and Australia, and analysed these using content analysis to identify themes. The survey asked people list as many aspects of health and quality of life as they could The sample included individuals in UK and Australia (n=200 in each country) with one of four conditions (asthma, diabetes, depression and skin cancer), or no condition. We found that respondents described many of the dimensions included in generic preference based measures. Relationships, activities, social aspects and enjoyment appeared far more frequently in the quality of life data than in the health data. There were some differences between UK and Australian respondents - UK respondents more frequently mentioned quality of life aspects related to freedom, enjoyment, and absence of restrictions. Australian respondents more frequently mentioned aspects related to mental functioning, peace and contentment, and independence. There were also differences between patient sub groups. | Brendan Mulhern | Descriptive Systems | 19750 | Ongoing | 2017 | 2024 |
| 2016710 | Going beyond health related quality of life – towards a broader QALY measure for use across sectors | Abstract Please provide a short summary of your completed research. This information will be included in the EuroQol database on funded research and may also be presented on the research section of the EuroQol website Quality adjusted life years (QALYs) are widely used around the world to inform health care decisions, such as the reimbursement of pharmaceutical products. Existing measures for estimating QALYs are mostly limited to health-related quality of life and focused on physical health. This will miss aspects of quality of life shown to be important to many patients, particularly those with long terms conditions and those reviewing social (i.e. non-medical) care. Furthermore, these measures are not designed to assess the impact on informal carers. We have developed a new generic measure of the impact of health and social care interventions on the lives of services users and their carers. The EQ Health and Wellbeing (EQ-HWB) and a short version called the EQ-HWB-s (based on a sample of items from the longer version) were developed using qualitative evidence from service users (health and care services) and carers, along with psychometric evidence, collected in six countries. | John Brazier | Descriptive Systems | 94367 | Completed | 2017 | 2018 |
| 2016750 | EQ-5D-5L in pregnancy. Antenatal and postnatal HRQOL, the impact of poor out | The general aim of this study is to describe, in terms of the EQ-5D5L: (A) the health in pregnancy and the maternity period, using a representative large nationwide dataset (n>8000), which - apart from the EQ data - have been used for developing an international instrument to study care delivery in pregnancy/maternity units. (B) describe health inequities along several criteria (income class, education, living area, ethnic background) using conventional direct methods, in general and after subdivision into clinically relevant subgroups. (C) to predict in women without antenatal clinical problems (>80%), postnatal health from 1. antenatal health, 2. personal characteristics, 3. delivery course, 4. the reported health of the baby, and, 5. facility/pregnancy unit. We will apply some known group comparisons to establish sensitivity of EQ-domains for common clinical conditions (episiotomy and ceasarean section: pain/discomfort; ceasarean section: mobility; poor outcome child: anxiety&depression). | Gouke Bonsel | Populations and Health Systems | 14950 | Ongoing | 2016 | 2017 |
| 2016610 | A Randomised Controlled Trial of the effect of Short-Stretch Inelastic Compression bandages on Knee Function following total knee arthroplasty: Comparison of EQ-5D-3L and EQ-5D-5L | Objectives: The aim of this research is to undertake a comparison of differentEQ-5D-3L and EQ-5D-5L value sets (UK, SP, NL) in a population of 2600patients withknee arthroplasty for osteoarthritis in the UKover a 12 month period. Methods:The comparison will take place as part of arandomised controlledtrial which aims to assess the effectiveness and cost-effectiveness of a two layer compression bandage versusstandard bandage post-operatively on patient reported outcomes in total knee arthroplasty patients. The trial aims to recruit 2600 participants and as part of the trial EQ-5D-3L data will be collected at baseline (pre-operatively)and 6 months (via theUKNHS Patient Reported Outcome Measures(PROMs)programme) and at 12 months(via a questionnaire). There is the opportunity toalso collect data on the 5L version in this population of patients, in order to undertake a comparison of the value sets, i.e. the 3L value sets versus the 5L value sets. The proposed research will assess the sensitivity to change of the 5L value setsby administering boththe3L and 5L versionsat baseline and at 12 monthsvia paper-based questionnaires. The projectwill be the firstto compare the EQ-5D-3L and EQ-5D-5Lvalue sets using panel data forthis population of patients, to our knowledge. The comparison will assess whether the new value sets for the 5L version aremore sensitive to the changes compared with the previous 3L value sets. | Juan M. Ramos-Goñi | Descriptive Systems | 14850 | Ongoing | 2016 | 2019 |
| 2016540 | Health utilities used in economic evaluations of cancer treatments | Background: Tremendous health resources are needed to treatment patients with cancer. Health utility is a key input used to perform cost-utility analysis (CUA), which is increasingly used to inform resource allocation decisions. Objective: To identify the sources and elicitation methods of health utilities used in CUAs in oncology and to understand to what extent the EQ-5D has been used in these CUAs. Methods: We used the Tufts Cost-Effectiveness Analysis Registry to identify oncology CUAs published in Medline between 1976 and 2021. Eligible CUAs had to include an oncology population (based on ICD-10 codes), report health utilities, and be published in English. The references of cited health utilities were traced to identify the original study and the method of utility elicitation. Characteristic of included CUAs were summarized and the methods to derive health utilities were compared. Results: A total of 1,512 CUAs in oncology were identified. The majority of CUAs (n=1,428, 94.4%) were model-based. Malignant neoplasm of female genital organs (i.e., breast, vagina, cervical, and ovarian) were the most common population considered (n=424, 28.0%). Among these CUAs, 8,714 health utilities were identified. Upon review, the sources of 2,096 (24.1%) health utilities could not be traced. Of the remaining 6,618 health utilities, 1,718 (26.0%) used original data often derived from expert opinion (n=547, 31.8%) or EQ-5D (n=479, 27.9%). The 4,900 health utilities that were cited from external studies were most often derived using the standard gamble (n=1,258, 25.7%) or EQ-5D (n=1,190, 24.3%). Conclusion: Published health utilities are widely used in oncology CUAs, especially for model-based analyses. The EQ-5D has been the mostly widely used utility-based instrument in these CUAs. | Feng Xie | Populations and Health Systems | 14958 | Ongoing | 2016 | 2017 |
| 2016580 | The feasibility of using the EQ-VT program to conduct the EQ-5D-5L valuation study in rural China | BackgroundThe EQ-5D-3L valuation study has been conducted in bothurban and rural areas in China using the Paris protocol. Urban and rural residents were able to understand and finish valuation tasks using time boards and cards in face-to-face interviews. The EQ-5D-5L valuation study, however, has been conducted in urban Chinaonly.Urban residents did not have problemsin using the EQ-VT programin computer-assisted personal interviews.The large urban-rural disparity in computer and Internet access poses a significant threat to the successfulness of using of the EQ-VT program to conduct the EQ-5D-5L valuation study in rural China. No studies have examined the feasibility of using the EQ-VT program among rural residents in China. AimsThe aimof the study isto explore the feasibility of using the EQ-VT program in computer-assisted personal interviews to conduct the EQ-5D-5L valuation study in rural China.MethodsThe proposed study is a primary research. A convenience sampling method will be used to recruit 120 participants lived in rural China. Quotas will be set based on age, gender, and education level.Computer-assisted personal interviewswill beconducted using the EQ-VT program. In the end of the interview, each participant will be asked to complete a supplemental questionnaire examining the difficulty in using the EQ-VT program. If participants have comments or suggestions on the EQ-VT program, they will be invited to joina focus group discussion. The study will analyze quantitative data from the supplemental questionnaire and qualitative data from the focus group to identify, examine, and interpret reasons ofhavingdifficulties in using the EQ-VT program. Based on study findings, strategies to help participants better understanding and completing the EQ-5D-5L valuation tasks using the EQ-VT program in rural China will be proposed. | Minghui Li | Valuation | 15000 | Ongoing | 2016 | 2023 |
| 2016460 | TTO valuation sets for EQ-5D-3L – country comparison | The literature supports the idea that health states are usually valued more positively when they are experienced than when they are imagined. However, health valuation-related papers typically disregard the role of experience in the reported values. Several authors have explored the impact of experience on Time Trade-Off (TTO) valuation tasks, but the evidence is weak, fragmented, and often mixed. To better understand variations in responses to TTO questions, we need to understand the characteristics of the respondents behind TTO responses. In the first part of this project, we investigate the conceptual basis for ‘experience’ and elaborate the idea of experience-based values under the knowledge or informed value viewpoint. To the classical interpretation of experience (personal experience related to the past or present), we add two additional elements of experience. Firstly, personal experience related to the future (for example, health states that a person pictures in their future). Secondly, vicarious affective experience (knowing someone close who has experienced a severe illness), distinguishing between two levels of proximity: affective and non-affective. We also examine how experience is tackled in the literature related to health valuation. A general result is that any experience with the health state being valued appears to be associated with higher values. In addition, the effect of personal experience on the valuation seems to be larger than that of vicarious experience (knowing someone who is living or has lived in a particular health state). In the second part of the project, we estimate the effect of different forms of experience on health state valuations following the TTO protocol. Following two approaches, we analyse the TTO value sets for EQ-5D-3L health profiles of the UK, Netherlands, Denmark, and Spain. The first approach analyses the impact of personal experience of a health state (in the present) on the valuation of each hypothetical health profile. The second approach analyses the effect of personal experience (in the past or present) and vicarious experience of serious illness on the valuation of hypothetical health profiles. In both approaches, we run linear regressions of the TTO valuation as a function of experience and age, sex, education level, and country. Personal, present experience-based values for TTO are typically higher than the non-experienced-based values. Results also indicate that individuals with experience of serious illness in others (vicarious), give lower values than those who do not experience severe illness at all. This effect seems smaller if we restrict vicarious experience to those close ones (vicarious, affective). These results come with caveats, as the different experience groups we are comparing relate to small sample sizes, and the lack of more granular information about the degree of experience limits the interpretation of the results. Further research is necessary to understand the role of experience fully. | Patricia Cubi-Molla | Valuation | 46000 | Completed | 2016 | |
| 2016410 | The impact of color coding and the optimal degree of overlap in discrete choice experiments | 2016410 was an extension of 2015430 on overlap and color-coding, where we demonstrated that implementing overlap and color-coding improves DCE data a lot. That study resulted in two highly cited papers. The 2016410 extension project aimed to run a similar study with some extra’s, involving varying the amount overlap to identify the optimal amount. Data collection has been completed as planned. | Elly Stolk | Valuation | 19375 | Completed | 2016 | 2016 |
| 2016250 | The relationship between the EQ-5D and surgical outcomes in a large Australian registry of percutaneous intervention patients | Quality of life following percutaneous coronary intervention (PCI) in patients with coronary artery bypass graft surgery (CABG) has been reported as lower than non-CABG patients, however previous reports pre-date modern developments in PCI and cardiac surgery. This study aimed to examine the 30-day QoL after PCI between patients with and without prior CABG using a contemporary dataset. A retrospective analysis of the Victorian Cardiac Outcomes Registry was undertaken. This study included 36,799 patients who completed the EQ-5D questionnaire that was used to assess the 30-day QoL and was compared between groups with and without prior CABG at baseline. Most of the participants were older than 65 years, more than half were male and had PCI due to acute coronary symptoms (ACS) and nearly 90% of patients received drug eluting stents. Compared to the ‘no prior CABG’ group, the ‘CABG’ group had a significantly higher rate of reporting a health problem (OR 1.30, 95% CI 1.10–1.53), presence of a problem in mobility (OR 1.42, 95% CI 1.15–1.75), personal care (OR 1.49, 95%CI 1.13–1.97) and usual activities (OR 1.39, 95%CI 1.15–1.68), pain/discomfort (OR 1.31, 95%CI 1.11–1.54), and anxiety/depression (OR 1.20, 95%CI 1.02–1.42). Despite modern developments in both PCI and CABG, our study showed a consistent negative association between prior CABG status and 30-day QoL following PCI. There is a need for better targeted cardiac rehabilitation in patients with prior CABG to address their greater relative risk of experiencing poor health. | Richard Norman | Populations and Health Systems | 15000 | Completed | 2016 | 2022 |
| 2016230 | The use and research of EQ-5D instruments in East and South-East Asia: a systematic review | We conducted three systematic reviews in this project. The first systematic review was focused on the measurement properties of EQ-5D and other commonly used generic preference-based measures in east and Southeast Asia. We used the COSMIN method to evaluate the construct validity, reliability, and responsiveness of EQ-5D, SF-6D, HUI, and QWB. We found that EQ-5D was most widely assessed and was found to have ‘sufficient’ construct validity and responsiveness in many populations, while the SF-6D and EQ VAS exhibited ‘inconsistent’ construct validity in some populations. Scarce evidence was available on HUI and QWB, but current evidence supported the use of HUI. The second review was focused on the health-state utility (HSU) data used in cost-utility analysis targeting Asia countries. It included 789 articles. We found that the characteristics of HSU data were not reported in more than 80% of the studies. Of HSUs whose characteristics were reported, most of them were estimated using the EQ-5D (55.7%), Asian HRQoL data (91.9%), and Asian health preferences (87.7%); 45.7% of the HSUs was estimated with a sample of 100 or more individuals. All four characteristics showed improvements after 2010. The third review was similar to the second review but covered only CUA studies published in the Chinese literature. In total, 234 articles and 1061 HSU were included. Most HSUs (n=743, 70.0%) were obtained from published literature. Most of the articles did not conduct a systematic review to obtain HSUs (n= 217, 92.7%). In terms of obtaining methods, 266 utility values indicated the use of EQ-5D. The systematic reviews summarised the use of EQ-5D in cost-utility analyses and its measurement properties in Asia. They provided clear evidence for the adequacy of EQ-5D and its important role in economic evaluation in Asia. | Nan Luo | Education and Outreach | 74000 | Completed | 2016 | 2017 |
| 2016260 | Comparing DCE designs that can be used to value EQ-5D-5L | The aim of this study was to compare a number of DCEs for the purpose of valuing EQ-5D-5L, constructed using different design methods, in a general Australian population sample. In this study a series of steps were undertaken to systematically compare latent scale DCE designs with different characteristics. A set of designs were constructed, and a number of indicators were tested using simulation methods. Following this, the designs were implemented in a general population sample (n=3,363), with respondents randomly allocated to one of the designs. The resulting data were analysed using a descriptive and modelling based approaches and compared across a number of features. We developed and tested 19 different designs varying in the design method (generator developed, algorithmic), software (NGene, SAS, Stata), priors (zero or informative), and level of overlap used. In the simulation study assuming an MNL model, it was found that all 19 designs had the ability to recover the parameters assumed in the data generation process, regardless of the priors assumed when generating the design. The results of the fieldwork suggested that there is not one set of design features that consistently produces better models in terms of the indicators studied. These focused on key issues often assessed in DCE studies valuing preference based measures, including the consistency of coefficient estimates and the precision of estimates. However, the poolability analysis suggests that there are still differences in the scale of the designs despite matching the sample as far as possible in terms of demographics. There are advantages and disadvantages of the design features tested. The results provide information about a range of key decision factors in the development of designs, and will be informative for researchers developing valuation studies for newly developed measures of QoL. | Brendan Mulhern | Valuation | 34000 | Completed | 2016 | 2017 |
| 2016280 | Valuing EQ-5D-5L in Australia: A comparison of the EQ-VT protocol and DCE with duration | The EQ-5D is widely used to inform Australian health care reimbursement decisions. An Australian study to value EQ-5D-5L using DCE with duration (DCETTO) funded by the National Health and Medical Research Council (NHMRC) is currently underway, led by the proposed investigators. However no data based on the preferences of the Australian population collected using cTTO and DCE without duration as recommended by the EQ-VT protocol are available. It is important for both methodological development and decision science to compare values generated using different methods. This study aims to: 1). Collect preference data in Australia using the EQ-VT protocol. 2). Compare valuation data and the values produced by c-TTO and DCE data (from EQ-VT) and online DCETTO valuation data (from the NHMRC study) to inform ongoing research around the development of TTO and DCE. 3). To compare the application of the two methods in terms of practical issues around the administration of the tasks, respondent and data collection burden. We will collect preference data from an Australian general population sample using the EQ-VT protocol. The sample for the EQ-VT will be drawn from the sample undertaking the online DCETTO, enabling within person comparison of methods. To estimate utility values, we will model the TTO and DCE data separately, and also use -5D-5L value sets produced using the EQ-VT and DCETTO protocols will be compared statistically to disentangle the extent to which different valuations (using similar functional forms) are driven by elicitation method, and the underlying model of preferences. | Rosalie Viney | Valuation | 80000 | Completed | 2016 | 2024 |
| 2016400 | Investigating the descriptive basis of EQ-5D: a cold-case analysis | EQ-5D is the most widely used technology for the measurement of health status, however almost all its related methodological development has concentrated on topics related to the valuation of health. Since 1993 the design architecture of EQ-5D remained unchanged until the development of the 5L and Y versions. Suggestions that EQ-5D undervalues important aspects of health have emerged over recent years. Remedial courses of action have been proposed which for the first time encourage the re-examination of the descriptive basis of EQ-5D. Little is known about the origins of the existing descriptive classification and the selection of the current 5 dimensions. However, the Lay Concepts study conducted by the York MVH team provided empirical evidence supporting early decisions taken by the EuroQoL Group but the study produced a single peer-reviewed publication and has remained completely unexploited over the intervening 25 years. This present study begins with a forensic review of the final report of the Lay Concepts study and a re-analysis of the qualitative and quantitative data generated by the interviews conducted with a representative sample of the general population. These results will be used to establish the legitimacy of the extant EQ-5D dimensions. The applicability of alternative analytic methods such as non-metric multidimensional scaling (MDS) and Q-Sort will be explored. Results from these analyses will be used to demonstrate potential gaps in the current EQ-5D descriptive classification Data from the Lay Concepts study will be exported to an NVivo 11 database and deposited with the UK Data Archive. | Paul Kind | Descriptive Systems | 42459 | Ongoing | 2016 | 2016 |
| 2016050 | 2-day entry level course describing development and current status of EQ-5D ”technologies” for Russia | Russian researchers (in common with other countries of the former Soviet Union) have relatively little significant experience in the design and use of standardized health status measurement systems. The development of HTA and health economics methods in the Russian Federation and elsewhere in neighbouring countries requires a cadre of suitably qualified health status measurement practitioners. The leading role of EQ-5D provides the ideal basis for creating such a domestic, national resource. An entry-level workshop can provide the catalyst to encourage the adoption of EQ-5D technologies. | Paul Kind | Education and Outreach | 4350 | Completed | 2016 | 2016 |
| 2015090 | Revisiting the MVH study: new methods for modelling UK valuations for the EQ-5D-3L | Background: The 2017 English EQ-5D-5L value set differs substantially from the 1997 UK EQ-5D-3L value set recommended by NICE. Possible reasons include: (a) preferences of people have changed over the last 20 years (b) the composition of the general public has changed, affecting average preferences (c) differences in methods used to elicit preferences; (d) differences in the way preference data are modelled. Given the implications of using the 5L value set instead of the 3L value set, it is important to understand the contribution of each factor. Aims: To examine the effect on the value sets of the specific approaches taken to modelling. The innovative modelling approaches used in modelling the 5L value set are applied to the 3L data. Isolating the effect of the modelling methods provides a better basis for comparing the two value sets. Data: TTO data from 2,997 respondents and 912 respondents in the UK 3L and English 5L valuation studies respectively. Methods: 3L and 5L TTO data are modelled addressing data censoring; heteroscedasticity in the errors; and heterogeneity in preferences. Linear regressions provide the comparison baseline. Censored regressions without accounting for the heteroscedasticity nor heterogeneity are estimated using the maximum likelihood method. Censored models with no heteroscedasticity, heteroscedasticity alone, and both heteroscedasticity and heterogeneity being taken into account are estimated using Bayesian methods. Comparisons are made between estimated coefficients from different modelling methods, and between the predicted index values. Results: Results suggest differences between the UK 3L and English 5L value sets are primarily caused by differences in the underlying preference data, particularly the large number of values < 0 in the former. Applying the 5L modelling methods to 3L valuation data would yield a different value set with different properties than the existing UK 3L value set. However, the modelling methods exert a greater magnitude of difference on the 5L values than on the 3L values. Results raise questions about the interpretation of the constant in value functions. | Ben Van Hout | Valuation | 36000 | Completed | 2015 | 2016 |
| 2015250 | Intercept investigation: Does the value drop from full health to any EQ-5D problems reflect preferences, or is it an artefact of the valuation method? | Background: Time trade-off (TTO) is a class of methods designed to elicit preference values for health states on a scale appropriate for use in quality-adjusted life year (QALY) calculations. TTO variants are the primary preference elicitation methods used valuation studies for the EQ-5D-3L and EQ-5D-5L health-related quality of life instruments. A common, and unfortunate, characteristic of TTO-based values is a disproportionate difference between full health (conventionally set to 1) and the mildest health states describable in e.g. the EQ-5D, compared to similar decrements added to imperfect health states. A disproportionate initial drop could lead to overspending on interventions targeting relatively trivial health problems. This study was designed to investigate whether the observed drop from full health is specific to full health, or better reflects a general tendency to contrast the presented health states, i.e. a form of end point aversion induced by the TTO format. Methods: 120 general population respondents were administered lead-time TTO for a fixed set of EQ-5D-5L health states (12111, 11122, 12122, 13224, and 24445), each traded off against 11111 and all dominating states, for a total of 14 comparisons presented in random order. For all triplets of states in logical dominance order (A, B, and C), we compared four statistical models for expressing the value of C in terms of A vs. through B: 1) no end aversion, u(C, A) = u(C, B)*u(B, A) End aversion for full health only, u(C, A) +α = u(C, B)*(u(B, A)+α), 3) End aversion in all TTO values, u(C, A) +α = (u(C, B) +α)*(u(B, A)+α), and 4) Proportional end-aversion u(C, A) *(1+α) = u(C, B) *(1+α)*u(B, A)*(1+α). Results: The worst performing model was the one assuming no end-aversion (1), and the best was model, assuming end aversion for all comparisons. Conclusions: The findings indicate that TTO values tend to be distanced from the top, which could reflect a contrasting effect. If this is observed in TTO-based valuation studies, the result would be a downward bias for all imperfect health states, suggesting that it may be appropriate to rescale TTO values, e.g. by removing the intercept. | Kim Rand | Valuation | 34750 | Completed | 2015 | 2024 |
| 2015350 | Demonstrating the feasibility and operational value of the routine measurement of health status in community mental health services: exploring the use of EQ-5D in an operational NHS setting | The use ofEQ-5D as a routine measure of patient healthstatus is increasingly evidentas can be seenin the NHS PROMS programme and in similar applications in other countries where the analysis ofdata based on pre- and post-intervention observation of patients provides information on theoutcomes of specific healthcare interventions. These data are generally speaking intended formonitoring aggregate levels of activity and performance. As yet we know little about the practicalvalue of health status measurement such as EQ-5D at a clinical level in delivering individual patientcare.Following a health outcomes workshop earlier this year clinicians in an NHS community mentalhealth service took the decision to use EQ-5D to routinely measure patient health status in theiroutpatient clinics (circa 1,200 consultations per annum). Practical implementation of this decisionrests on two factors – firstly agreement on the process of patient data capture and secondly on ameans of analyzing and reporting these data.Discussion within the clinical unit has now largely resolved the first of these factors but the problemof encoding / analyzing and reporting patient EQ-5D data remains a challenge. It is the solution tothis problem which is the subject of the current proposal. | Paul Kind | Populations and Health Systems | 25012 | Ongoing | 2015 | 2024 |
| 2015420 | A City-wide survey of HrQoL in children using EQ-5D-Y | Paul Kind | Youth | 15274 | Ongoing | 2015 | 2024 | |
| 2015120 | Making LIFE simple: Exploration of a hybrid of best-worst scaling and visual analogue scale in valuing EQ-5D-5L | The EQ-5D research community continues its endeavor in search for innovative methods to elicit preferences for health status measures such as the EQ-5D-5L, given the limitations and concerns among existing methods. Best worst scaling (BWS) is another choice-based technique which presents one health state at a time. This could potentially make the valuation task less cognitively demanding. Similar to other choice-based techniques, BWS also derives weights on a latent utility scale and thus cannot be directly used in quality-adjusted life year (QALY) calculation. In this proposal, we explore a new approach called BWS-VAS to directly deriving the impact weights on the full health-dead scale. | Feng Xie | Valuation | 59450 | Completed | 2015 | 2017 |
| 2013300 | The impact of framing effects on EQ-5D-5L valuations | Discrete Choice Experiments (DCE) for health state valuation, involving duration as an attribute (DCEduration) or death as an alternative (DCEdeath), are increasingly promoted. Especially DCEdurationis regardedas a promising technique. Nevertheless, DCEdurationfor health state valuation is still in its infancy and results that are obtained warrant further investigation. A consequential result of the DCEdurationvaluation technique compared to Time Trade Off (TTO) is that DCEdurationcurrently classifies much more states as worse than dead (WTD) and produces lower average health state values. Given the important consequences for cost-effectiveness analyses, and the broad acceptance of health state values derived using TTO, the question inevitably arises: what is the explanation for this difference? It may be clear that remaining problems in WTD estimation using TTO contribute to the problems. However, they are probably not the sole explanation. We hypothesise that framing effects also contribute to the differences, because ‘losses and gains’ and ‘immediate death’ are defined differently in these methods. Against this background we propose to 1.Examine how alternative editing or framing of the questions affects outcomes in TTO, DCEdurationand DCEdeath, and in turn2.Explore to what extent framing differences provide an explanation for across-method differencesWe hypothesize that the differences between TTO and DCE may at least in part be reconciled by examining and manipulating the framings. If this hypothesis is correct, this study will contribute significantly to the acceptance of DCE as method for health state valuation in future protocols. | Elly Stolk | Valuation | 172300 | Ongoing | 2014 | 2024 |
| 2013220 | Feasibility of the use of EQ-5D in quantitative benefit-risk assessment | Aim: Market authorization for pharmaceuticals will only be granted to products that demonstrate sufficient levels of quality, safety, and efficacy for the indicated patient population. Usually, limited information regarding the safety and efficacy of a new pharmaceutical is available when the decision whether to grant the product a market authorization license needs to be made by regulatory authorities. A main issue in quantitative benefit-risk assessment is the weighing of benefits and risks on a single scale.1 Data regarding benefits consist of clinical trial endpoints and are usually disease-specific whereas ‘risks’ consist of the adverse drug reactions (ADRs) that are reported during a clinical study. In the assessment of a pharmaceutical’s benefit-risk profile, a decision maker will have to weigh a positive outcome (such as an increase in the progression-free survival) against the occurrence of a range of ADRs in a proportion of patients. This project intends to determine whether EQ-5D data is capable of capturing the negative effect of ADRs on a patient’s quality of life. If EQ-5D indeed is able to measure such risks, this could be an important step towards the use of EQ-5D data in quantitative benefit-risk assessment. General Methods: Before a benefit-risk assessment using EQ-5D data can be performed, the feasibility and validity of this approach needs to be assessed. This study will examine the sensitivity of the EQ-5D in the measurement of the impact of experienced ADRs on health-related quality of life. If the results of our study would confirm the sensitivity of the EQ-5D in measuring health effects of ADRs, this could make the EQ-5D applicable for quantitative benefit-risk assessment. Performing a full benefit-risk assessment is beyond the scope of this study. | Mark Oppe | Others | 33000 | Ongoing | 2013 | 2014 |
| 2013190 | Overview of psychometric properties of EQ-5D in a range of conditions | Aims: EQ-5D has been widely used in many different health conditions and the amount of evidence of its psychometric properties has increased over recent years. The primary aim of this study was to review papers reporting systematic reviews of the validity, reliability and/or responsiveness of EQ-5D. A secondary aim was to review other evidence about the extent to which EQ-5D covers the dimensions of health affectedby various health conditions.Methods: Medline and Embase were searched for systematic reviews of the performance of EQ-5D. Supplementarysearches were carried out in Cochrane Library, Web of Science, reference lists of included studies, the EuroQol databaseand hand searching of EuroQol Scientific Plenary Proceedings. In addition the website of the Oxford Patient Reported Outcome Measures (PROMs) Group was searched for reports. Papers providing an overview of evidence relating to the validity, reliability and/or responsiveness of EQ-5D based on a systematic review were included. Data were extracted using a template designed specifically for the study.Results: 25reviewswere identified in this studyand a further 18reviewswere identified from the Oxford PROMgroupwebsite. The papers covered a range of conditions. Overall there was evidence of good to fair performance of EQ-5D in depression, diabetes (type 2), rheumatoid arthritis, skin conditions, cancer, cardiovascular disease, asthma, personality disorder and urinary incontinence. The evidence was mixed in COPD, dementia, schizophrenia and vision disorders, and poor for hearing disorders. The was little or no evidence for liver transplantation, venous leg ulcers, haemophilia, skin cancer, systemic lupus erythematous, bipolar disorderand low back pain; although the limited evidence showed positive results for liver transplantation, haemophilia and leg ulcers.Conclusions:This study has identified several reviews of the performance of EQ-5D. Most of the evidence suggests good psychometric properties of EQ-5D; however there are particular concerns about its ability to capture the impact of dementia, schizophrenia, visual impairment and hearing disorders. Further research is encouraged to: (i) review the literature for areas where reviews have not yet been published; (ii) conduct more primary research into the psychometric properties of EQ-5D where data are lacking; and (iii) further explore the use of bolt-ons where performance of EQ-5D is poor. | Louise Longworth | Valuation | 5800 | Completed | 2013 | |
| 2013240 | Indonesian valuation and validation study of the EQ-5D-5L and its application in families living in unhealthy circumstances and in breast cancer patients | Indonesia is with more than 238 million people the world’s fourth’s most populous country. Given the large gap between its under-resourced health care system and its strong and persistent economic growth (6% per year), a rise in new pharmaceutical products,and illness prevention projects with corresponding cost-effectiveness analyses are to be expected in the coming years. The introduction and use of the validated EQ-5D-5L can perform a pivotal role here. Therefore, the aimsof this study are:1. To translate the EQ-5D-5L in Bahasa Indonesia (BI), to obtain age and gender norms, and to derive a preference valuation set for the translated EQ-5D-5L health states from the Indonesiangeneral public. 2. To validate the EQ-5D-5L by its application inan impoverished population group in Jakarta. Methods: Ad 1. Translationof the 5 levels versionof the EQ-5D, the EQ-VT and the guide book will be carried out according to guidelines of the EuroQol Group Executive office. Next, arandom sample (N=1,000) representative forthe Indonesianpopulationwill be asked to value a subset of EQ-5D-5L health states usingthe EuroQol Valuation Technology (EQ-VT). Regression techniques will be used to estimate anIndonesianvalue set of all possible 3,125 EQ-5D-5L health states from the empirical validated subsample of health states. Test-retest reliability of the valuationswill be determined in a subgroup (n=200)and there we will examine the relation between the quality of the interviews (adherence to the protocol) and the valuation task (EQ-VT).Age and gender (distribution) norms of the EQ-5D-5L descriptive system and EQ-VAS for the general population will be obtained as well. Ad 2: Validation: The construct validity of the EQ-5D-5L will be determined in boththe general population and in 250 families, living in unhealthy circumstances in the urban area of Jakarta and/or Bandung. The construct validity will be based on the comparison of the EQ-5D-5L with a number of additional quality of life measures (among which the WHOQOL-Bref) and a comparison between the healthy population and the impoverished sample.In addition, the EQ-5D-5L will be completed by about 200 Indonesian patients with breast cancer in Bandungwho participate in a Dutch Cancer Foundation funded project that ischaired by two of the principleinvestigators of the presentEUROQOLproposal(SS and JP). The patients’scores will be stratified according to cancer stage (I-IV) and compared with the scores of the other samples. Reports and presentations will be provided for the Indonesian stakeholders (government officials, physicians and water sanitation companies)and for the international scientific community. | Jan Busschbach | Valuation | 71100 | Completed | 2014 | |
| 20170401 | Deriving EQ-5D-5L preference weights for Denmark - request for budget extension | Deriving EQ-5D-5L preference weights for DenmarkThe project has two main aims:i)To derive a set of EQ-5D-5L preference-based weights for Denmark by using the EQ -VT protocol that includes composite time trade-off (TTO) and DCE as paired comparisonsii)Tofurther explore DCE methodology by adding a new task after the standard EQ-VT protocol, which is triplet DCE with duration (same as that used in the Peru 5L valuation study)Current status of project:-Approx. 810 interviews completed to date-Good quality data for cTTO, and standard DCE-Interviewers are performing well -All participants are also asked to completetriplet DCE-Poster on interviewer experiences will be presented at ISPOR 2019 Reason for request for extra funding from EuroQol:-A lower than expected acceptance rate for participating in interviews led to too slow data collection (7 months to complete approx. 400 interviews), loss of 4 of the 7 initial interviewers, and higher study costs. -In July 2019 we made a pilot with the market research company Epinion for them to contact potential respondents and recruit them to the study. This has worked well, and we are continuing our collaboration with Epinion-We request extra funding to cover costs related to participant recruitment by Epinionandto employment and training of four new interviewers.Project ExtensionWe also request formal acceptance that the project completion date is extended to December 2020. | Lars Ehlers | Valuation | 40946 | Completed | 2018 | 2020 |
| 20170410 | Comparing the EQ-5D-3L and EQ-5D-5L in a cohort of cancer patients | Improvements in HRQoLas measured by the QLU-C10D (derived from the condition specific EORTC QLQ-C30 instrument) appear to be associated with smaller changes in utility quantified by thematched5L compared to the 3L-For small reductions in HRQoL there is little to no difference between the 3L and the 5L group. For the large falls in HRQoL the 5L tariffsgenerated changes of smaller magnitude than the 3L tariffs-The crosswalk (a) loses the increased sensitivity of the 5L (if it detects more change) but (b) it stretches out utility values across a larger range (the 3L range), and hence gains or losses are larger and more in line with the 3L tariffs We conclude that this research demonstrates the potential effects of switching between instruments on policy recommendations resulting from cost-utility analysis in an oncology setting-3L data generally suggest larger health gains from effective interventions than 5L data, which will tend towards more attractive incremental cost-effectiveness ratios (ICERs) for interventions that improve quality of life. Attached are the presentations to the EuroQol Academy meeting 2018 (slides in the taskforce session and poster),and thepaper and presentation for the EuroQol Plenary meeting 2018. | Richard Norman | Descriptive Systems | 40000 | Completed | 2017 | 2017 |
| 20170260 | Exploring potential innovations in hybrid modeling (REVISED) | The aim of this project was to incorporate the power function into the estimation of cTTO-based weights and to test the effect of the power function on the 20-parameter model between countries (the Netherlands, Spain), response interpretation (point, interval), heteroskedasticity (constant, hetero) and censoring (none, -1). Examination of the formulae results revealed two limitations with cTTO responses: power cannot be estimated using cTTO responses alone and there is an overlap/or gap between BTD and WTD errors, which prevents interval estimation using the power function and cTTO responses. The benefits of relaxing the constant proportionality assumption is largely a shift in the values up, smaller confidence intervals, and improved face validity (e.g., fewer negative effects-coded coefficients). An exploratory analysis was conducted to attempt to address the two limitations by widening the intervals and incorporating DCE dead data. These pragmatic techniques appear successful and suggest specific changes to the EQ-VT protocol and hybrid analyses. | Benjamin Craig | Valuation | 10000 | Completed | 2017 | 2018 |
| 20180210 | Drop dead: an assessment of the conceptual basis for ‘death’ as an anchor in health state valuation | By convention, values for generic preference-based measuresare anchored at 1 = full health and 0 = dead.Consequently, stated preferencemethods used to value health states often involve consideration of the state ‘dead’or ‘death’.Using dead as an anchor implies that statesworse than dead must be assigned negative values, which continues to be problematicdespite considerable efforts devoted to developingnew methods.This paper challenges the assumption that anchoring health state values at ‘dead = 0’ is a necessary conditionfor values tobe used in QALY estimation.We consider fivepropositions, using narrative reviews of the literature and conceptual explication of the problem: i) anchoringat ‘dead’ isnot required by theories of scale measurement and utility; ii) anchoring at ‘dead’ is not required by extra-welfarism; iii) anchoring at ‘dead’is not required by the interpretation of extra-welfarism as health maximisation; iv)‘dead’ exhibitsproperties that are problematic foranchoring;and v) thereare alternative states to ‘dead’ that exhibit favourable properties.Anchoring 0 at deadis not a requirement of the theoretical foundations of health status measurement or cost-utility analysis. The use ofdead as an anchor is unnecessaryandundesirable because of the methodological and conceptual issues it causes. We describe alternativeapproaches, including a worked example of how these couldbe used in QALY calculations.There is strong support for each proposition.Anchoring health state values at dead was an arbitrary choice made early in the developmentof health state valuation methods. While it is important that, for economic evaluation, dead should equal 0 and dead people shouldgenerate no QALYs, anchoring dead at 0 is not a necessary condition for this. Thereis a clear case for asserting that health economistsshould 'drop dead' from health state valuation tasks. | Nancy Devlin | Valuation | 12500 | Completed | 2018 | 2018 |
| 2015210 | Reducing biases in adaptive Time Trade-Off using non-transparent methods | This paper offers a new explanation of the disparity between utilities elicited using standard (or Classic) and Time Trade-Off (TTO) and utilities elicited using Chaining. we refer to “Classic” as the utility of a health state obtained from a Time Trade-off question where the end points are Full Health and Death. We refer to “Chained” as the utilities that are obtained from a TTO question where at least one of the end points is neither Full Health or Death. Previous literature has observed that the two sets of utilities are different, and they have been explained by anchoring effects. We present and alternative explanation based on the different Evaluation Mode that Classic and Chained TTO use, namely, Separate Evaluation Mode in the case of TTO and Join Evaluation Mode in the case of Chained TTO. In this paper, we present the result of a study conducted among the Spanish general population (n=346) to separate the role of anchoring from the role in the Evaluation Mode as potential explanations of the disparity between Classic and Chained utilities. All subjects had to estimate the utility of three health states (say A, B and C) using the standard TTO. They also had to answer three direct TTO questions (A vs B, A vs C and B vs C) to estimate Chained utilities. The Chained procedure always started with a comparison between two health states with the same duration (10 years). Our study also observed differences between Classic and Chained utilities. The disparity was explained by the large amount of preference reversals observed. People preferred one health state in standard TTO and another one in the choice between (A, 10 years) vs (B, 10 years). The discrepancy between Classic and Chained utilities vanished for those subjects who did not do preference reversals. Those results suggest that the difference between Classic and Chained utilities is mainly produced by the different Evaluation Mode and not so much because of anchoring effects. We present the implications of our results for preference elicitation methods for health states. | Jose Luis Pinto-Prades | Valuation | 110500 | Completed | 2015 | |
| 20180740 | What contributes to variations in self-reported health for the general population and for ten condition-specific patient groups in England? - An empirical analysis using repeated cross-sectional general practice data with 2.9 million patient records. | Background Significant variations in the UK’s population health have been widely observed. Little is known about individual and health service factors associated with these variations in health or about how much of the unexplained variation is at patient and health service levels. Aim This report explores which factors explain the variation in patients’ self-reported health, measured by the EQ-5D-5L instrument, for the English general population and for ten patient groups with self-reported chronic conditions. We quantify how much of the variation that observed factors could not explain can be attributed to patients, general practice, and Clinical Commissioning Groups (CCGs) characteristics and whether they differ across the general population and ten patient groups. Methods We linked data from three data sources - the NHS’s General Practitioner (GP) Patient Survey, Quality and Outcomes Framework, and GP workforce databases, over five years between 2012/13 to 2016/17. The resulting dataset covers almost all GP practices in England, with a nationally representative sample for the general population (N=2,913,294). Additionally, we generated ten subsamples for each chronic condition. We use ordinary least squares, mixed-effects, practice fixed- and random-effects models to identify factors associated with EQ-5D-5L index variation for the general practice population and for groups of patients with one of ten specific conditions. We also calculate ICCs using variances estimated from mixed-effects models to decompose the unexplained variation in the EQ-5D-5L index to patient, GP, and CCG levels. We explored the impact of missing values on mixed-effects models using multiple imputation. Results Some explanatories (such as multimorbidity, gender, deprivation, employment status, smoking status, satisfaction with access to the practice and good overall experience with the practice) had similar and plausibly signed effects for all 11 sets of individuals. But there were differences for those with different conditions. For example, those reporting their ethnicity as Black had lower EQ-5D-5L index if they had Alzheimer/dementia or angina but higher EQ-5D-5L index if they have asthma, diabetes, hypertension, or mental health problems. Better clinical quality for specific conditions was associated with better patient reported health only for three conditions (asthma, diabetes, epilepsy). For the general practice population, the unexplained variation in the EQ-5D-5L index was almost entirely at patient level (99.57%) with very small general practice (0.29%) and CCG (0.14%) contributions. Ten condition-specific patient groups shared similar findings for the decomposition of unexplained variation as that from the general population. Conclusion The findings from our study identifies factors that explain the variation in health for the general population and patient groups with chronic conditions in England. Policymakers could develop interventions to reduce or eliminate the effects for some of those factors in our list, such as smoking and deprivation status of individuals, or patient satisfaction with access to their general practice, to improve health and to reduce variation in health. | Yan Feng | Populations and Health Systems | 46800 | Completed | 2019 | 2020 |
| 20170160 | Can we use a 25 health states to estimate a EQ-5D-5L value set instead of “EQ-VT standard” 86? | To construct the value set of EQ-5D-5L, the EuroQol Group designed a standardized valuation protocol (the EQ-VT). The experimental design of the EQ-VT includes a set of 86 health states needs to be valued using composite time trade-off (cTTO) method. These 86 health states were selected using a Monte Carlo procedure which was applied to a set of simulated data. It is currently unknow Version 26JAN2017Page 2how the 86 state cTTO design of the EQ-VT performs compared to other possible designs.We have already investigate this issueby using a so-called ‘saturation dataset’, which contains the observed VAS valuesfor all 3,125 health states in EQ-5D-5L. Using this dataset, we tested different design choices(i.e. different subset of health states). We included the subset of current EQ-VT design to see how well they can predict the observed values from the saturation data by computing the Mean absolute error (MAE) for all 3,125 health states. The result showedthe current EQ-VT selection of 86 health states performed well in estimating VAS valuesfor EQ-5D-5L health states. In addition, we found that a small orthogonal design with 25 health states performed also well. This indicates a reduction in design size (i.e. the number of states used for direct valuation/included in the design) is possible, which would increase the feasibility/reduce the burden of doing an EQ-VT study.The results from our work using the saturation data have a limitation in that the results werebased on VAS instead of cTTO.Therefore we plan a 3-arms study to confirm and further investigate our findings incTTO. In this study, we plan to collect cTTO data on two most prominent design choices as found in the VAS study: the orthogonal design with 25 states and the Bayesian design also with 25 states. Further, we will collect cTTO data for the current 86 EQ-VT as one control arm. To make this investigation feasible and less costly, we will collect the data using 500 Chinese students as respondents. The logistics for this study will benefit of the experience of similar logistics employed during the VAS EQ-5D-5L saturation in China. This will assure that the data is collected swiftly and validl | Jan Busschbach | Valuation | 37250 | Completed | 2017 | 2018 |
| 20190550 | Public perspectives on patient preferences: an extension to project 2016560 | Aim:While differences between values derived from hypothetical and experienced health state valuation exercises are established, there is a more limited understanding of why these differences exist, what members of the public think about the differences, and how they may be practically and acceptably resolved. This research will extenda previousEuroQol project(2016560),byexploring these three domains within a general population samplein three new focus groups. This will allow us to assess the saturation of themes and probe deeper the perceived implications of differences between hypothetical and experienced valuations, and the practicalities of proposed solutions in reconciling such differences. Methods:Members of the general public (n=15) will be recruited to three focus groups, purposively sampled to achieve approximately equal numbers of men and women and a spread of ages. In the focus groups, participants will complete an introductory task that involves indicating their expectations of five consequences (enjoyment, relationships, independence, dignity, and activities) for an EQ-5D-5L moderate mental health state (11333) and a moderate physical health state (33311). Second, participants will be shown a short visually-enhanced presentation of recent data collected for the two abovementioned health states, from experience (patients) or expectation (general public), differences and similarities will be highlighted. Finally, a semi-structured discussion will be held, where participants will discuss theirviews on the differences and on potential, acceptable solutions for preference elicitation that may minimise such differences. Focus groups will be recorded, transcribed verbatim, and analysed using Framework analysis to identify common themes and sub-themes. | Milad Karimi | Valuation | 22315 | Completed | 2019 | |
| 20170450 | Publishing a paper titled “Cost-utility analysis using EQ-5D: does how the utility values are derived matter?” | The aim of this project is to publish a paper in a peer reviewed journal. The paper mainly examines the effect of using different EQ-5D value sets (including the UK 3L and 5L value sets) on cost-effectiveness analysis. The paper has been drafted but needs more work to be publishable. The draft abstract of the paper is as below: Objectives: This study aimed to evaluate how country-specific EQ-5D-5L value sets would affect cost-effectiveness results. The impact of crosswalk- and mapping-derived EQ-5D-3L values was also examined. Methods: The evaluations were based on a cost-utility analysis of hemodialysis (HD) and peritoneal dialysis (PD) for patients with end-stage renal disease (ESRD) in which primary EQ-5D-5L and Short Form-12 (SF-12) data was collected for quality-adjusted life year estimation. Individual-level utility values were generated using EQ-5D-5L value setsfrom seven countries(5L), EQ-5D-3L Version 18 NOV 2015Page 2 value sets from seven countries via crosswalk (c3L), and four algorithms mapping from SF-12 to EQ-5D-3L (m3L). Cost-effectiveness was assessed for non-diabetic and diabetic patients separately, by comparing incremental cost-effectiveness ratios (ICERs). Results: ICERs based on 5L values ranged from S$55379 to S$62222 per QALY for non-diabetic patients and S$69008 to S$77406 per QALY for diabetic patients. ICERs based on c3L values ranged from S$56210 to S$61947 per QALY for non-diabetic patients and S$71843 to S$82459 per QALY for diabetic patients. 5L and c3L value sets of the same country tended to produce similar ICERs for non-diabetic patients, but 5L generated lower ICERs for diabetic patients. ICERs based on m3L values (range: S$82588 to S$92506 per QALY) were much higher than others. Conclusions: Our study shows that currently available approaches to generating EQ-5D utility values would lead to varied ICER values and sometimes different decisions (using S$60000 per QALY as the threshold) in cost-utility analysis. It seems that developing and designating an EQ-5D value set of own country, such as a country-specific 5L value set, is imperative for achieving valid and consistent economic evaluation for health technology assessmen | Nan Luo | Descriptive Systems | 5000 | Completed | 2017 | 2018 |
| 2015180 | Exploring non-iterative TTO (ENITTO) | Background – Time Trade-Off (TTO) usually relies on “iteration”, which is susceptible to bias. Discrete Choice Experiment with duration (or DCETTO) is free of such bias, but respondents find this cognitively more challenging. This paper explores non-iterative TTO (NITTO). In NITTO respondents see a series of independent pairwise choices without iteration (similar to DCETTO), but one of the two scenarios always involves full health for a shorter duration (similar to TTO). Methods – We examine the performance of three different types of NITTO relative to DCETTO (i.e. four “Types” of choice tasks). Each Type is presented in two ways: (a) verbally tabulated (as in a DCE); and (b) with visual aids (as in a TTO). Thus, there are eight survey variants, each with 12 experimental choice tasks and a 13th task with a logically determined answer. Data on the 12 experimental choices obtained from an online survey of 6,618 respondents are modelled by variant using conditional logistic regressions. Results – The overall results suggest that NITTO seems feasible. Fewer respondents found the tasks difficult compared to DCETTO; the great majority of respondents “pass” the logical consistency test; and data can be modelled to produce interpretable coefficients. However, some relatively mild states appear to have almost implausibly low values, and the range of predicted values between state 22222 and 55555 seems narrow. A high proportion of respondents are non-trading, always choosing the shorter survival in full health over the longer survival in worse health. | Aki Tsuchiya | Valuation | 87870 | Completed | 2015 | |
| 169-RA | Value sets for EQ-5D-5L: A compendium, comparative review & user guide | Background: EQ-5D value sets are usually published in peer reviewed scientific journals, from which the scoring algorithms and other relevant information may be extracted. Szende et al. (2007) bundled information of all EQ-5D-3L value sets available at the time into a single book, which was well received as an accessible and useful resource for users. Since then, many EQ-5D-5L value sets have been published, yet no centralised resource such as the Szende et al. (2007) book exists for EQ-5D-5L value sets to date. Aim: The aim of this project is to develop a value sets book for the EQ-5D-5L. This book will include information on all EQ-5D-5L valuation studies and value sets so far, and inform our users on how this data has been collected and how the value sets differ from each other. Methods: Several researchers will be invited to contribute to one or more chapters of this book. These researchers are experts in the field and have contributed significantly to the EuroQol valuation protocols. Furthermore, information from (published) manuscripts of valuation studies will be collected, summarised and presented in a structured format, as in the previous book by Szende et al. (2007). In cases where information is missing from the manuscripts, this information will be requested from the PIs of those studies. | Bram Roudijk | Valuation | 89072 | Completed | 2020 | |
| 2014110 | Assessing the health of the general population in England: how do the EQ-5D 3L and 5L versions compare? | not available | Valuation | 8250 | Completed | 2014 | ||
| 1979-EO | Travel scholarship request to attend ISPOR Europe 2024 for findings dissemination. | This grant proposal seeks funding to support the dissemination of research findings through a poster presentation in the “Patient-Centered Research” section at the ISPOR Europe 2024 Conference which will be held between 17 and 20 November 2024, in Spain. The study, “_**Can EuroQol Instruments be Used to Study Climate Change? Validity and Responsiveness of the EQ-5D-5L, EQ-HWB and EQ-HWB-S to Measure Health and Wellbeing Impact of Heatwaves Among Older Adults**_” [PCR299], assesses the validity and responsiveness of EQ-5D-5L, EQ-HWB and EQ-HWB-S for measuring the health and wellbeing impact of heatwaves among older adults. The study uses data from a cohort of Chinese residents aged 60 and above, surveyed four times in 2023. The study found that the EQ-5D-5L, EQ-HWB and EQ-HWB-S demonstrate satisfactory known-groups validity, though limited responsiveness, in measuring the health and wellbeing impact of heatwaves. The project is funded by the EuroQol Research Foundation (1599-RA). **Strategic Impact for EuroQol Group** The study provides strategic value to the EuroQol Group by generating important evidence on the psychometric performance of EQ-5D instruments. It is particularly significant as it supports the introduction of the EQ-HWB-S and EQ-HWB, aligning with the symposium at ISPOR Europe 2024 Conference, “**_Going Beyond Health-Related Quality of Life: Towards a Broader QALY Measure for Use Across Sectors: Introducing the EQ Health and Wellbeing Short (EQ-HWB-S) (Discussion Leader: Clara Mukuria)_**”. Furthermore, this research contributes to the growing field of climate change studies, which represents one of the most pressing public health challenges of the century. This contribution will enhance the EuroQol Group’s reputation beyond the traditional healthcare research community. | Meixia Liao | Dissemination, OA fee | 1634 | Ongoing | 2024 | 2024 |
| 1971-EO | Travel scholarship request to attend ISPOR Europe 2024 for findings dissemination. | This grant proposal seeks funding to support the dissemination of research findings through a podium presentation in the “Health Utility Measurement and Methods” section and a poster presentation in the “Methodological & Statistical Research” section at the ISPOR Europe 2024 Conference which will be held between 17 and 20 November 2024, in Spain. My first study, **“EQ-5D-Y in Children With Asthma or Eczema: Does Perspective Matter in Proxy-Reported Outcomes Assessment of Pediatric Populations?”** [P11] has been identified as Top 5% Finalist for the ISPOR Europe 2024 Research Presentation Awards, signifying that it is of significant interest to the attendees of ISPOR. This study evaluates the measurement properties of two different proxy versions (proxy-proxy and proxy-patient versions) of the EQ-5D-Y-3L and EQ-5D-Y-5L, as reported by caregivers or legal guardians of pediatric patients with asthma or eczema. The project is partially funded by the EuroQol Research Foundation (EQ Project 188-2020RA; total project value: 22,120 euros [without a budget for conference]), and preliminary findings were presented at the EQ Early Career Meeting 2022. My second study, **“Is a Longer Recall Period Better? A Study of EQ-5D-5L With a “1-Week” Recall Period in the General Population”** [MSR31], compared the psychometric properties of two EQ-5D-5L versions differing in recall period (today vs. 1 week) in a Singaporean general population aged 15 and above (n=592) who participated in a nationwide household survey. This project is not funded by EuroQol. | Jia Jia Lee | Dissemination, OA fee | 1636 | Ongoing | 2024 | 2024 |
| 2015110 | Estimation of the EQ-5D-5L value set for Portugal | Aims:Any decision-making, mainly in a context of limited resources, has to have arationaleand be transparent. The EQ-5D is a generic preference-based quality of life measure considereduseful to support clinical and policy decisions, by providing utility values that can be easily converted into QALYsto be integrated in cost-utility economic evaluations.However, its first 3L version showssignificant ceiling effect. Therefore, a 5L version was designed with five levels ofproblems intensity for each dimension, allowing utility values for all 3,125 health statesmeasured.The purpose of this study was to estimate the value system for Portuguese population in what concernsthe different health states described by the EQ-5D-5L description system.Methods: Health states values were elicited according to the EuroQoL Valuation Technology (EQ-VT) protocol using composite time trade-off (cTTO) and a discrete choice experiment (DCE). Data were collected between October’2015 and July’2016 using computer-assisted personal interviews in arepresentative sample of the Portuguese population aged above 18 years andstratified by age and gender.cTTO data weremodelledby fixed and random effects models, such as OLS, variable effects GLS, censored GLS, censored Tobit, interval GLS censored at 1, and interval GLS censored at 1 and 0. Model performance was assessed according to specific criteria: internal consistency, statistical significance of the estimated coefficients, and goodness of fit evaluation.The ability for the model to tackle censored data was also evaluated. DCE data were not modelled.Results: A sample of 1,451 respondents revealed aVAS mean score of78.9 in a 0-100 scale from the worst to the besthealth. Themodels showed no inconsistenciesand the models with best performance was the interval GLS censored at 1.Conclusions: This research provided the Portuguese value set for the EQ-5D-5L based on cTTO and these findings are to be usedin economic evaluationsto be conducted in Portugal. | Pedro Ferreira | Valuation | 47000 | Completed | 2015 | |
| 2013230 | Establishing a tool for endorsing EQ-5D valuation studies | not available | Feng Xie | Valuation | 38500 | Completed | 2013 | |
| 2016700 | Selecting health attributes; the patients perspective | Objectives To describe the concept of health, traditionally, the WHO definition is used. During the time this definition was first set out, morbidity mainly featured infectious diseases, while today chronic diseases are much more prevalent. Medicine has changed from ‘illness-centered ’to ‘patient centered’ by integrating the patient perspective. Additionally, with increasing life expectancy, more people receive ‘care’, instead of ‘cure’. In line with the shift from viewing disease as a state, to thinking of it as a process, the life-span perspective takes into account how a persons perceived health condition depends on how they grow, develop, and decline. There is also a concern that existing health instruments, which predominantly rely on consensus and expert opinion of health care professionals, have no adequate content coverage of the concept of health from the perspective of the individual patient, especially in regard to particular patient groups. These changes and concerns indicate that there is a demand for measures including other health aspects to evaluate treatment effectiveness. Therefore, the aim of the present study was to identify studies that reported on the development of instruments from the patients’ perspective and to describe which health aspects are relevant from this perspective. Methods Systematic review to identify studies that reported on the development of instruments from the patients’ perspective. Attributes were extracted from the papers, and categorized into domains and duplicate or equal terms were merged. The final list of attributes is presented, and compared to existing preference-based instruments (e.g., EQ-5D, HUI, SF-6D). ResultsAn electronic database search initially generated 855 records. After screening the titles and abstracts, 680 papers were excluded. The main reasons were that the paper reported on a ‘hard’ clinical outcome. Seventy-six papers remained for full text screening. During this process another 32 papers were excluded for various reasons. Mainly because of the concept (i.e. quality of care). From the remaining 44 studies, 801 attributes that are important from the patients’ perspective were extracted and categorized in four domains (mental, physical, social and other). Physical symptoms represented the largest group. Conclusions Existing generic preference-based instruments are relatively older instruments compared to the generic instruments developed with patient input, and therefore might not be representative for the current health care practice (patient-centered care). The generic instruments developed with patient input do not cover the entire life span. Youth and elderly are not represented in these measures. Therefore, the content coverage of the existing instruments might be inadequate. | KM Vermeulen | Descriptive Systems | 44393 | Completed | 2017 | 2018 |
| 2015030 | Order effects in the EQ-5D item responses | Background: The EQ-5D has threeversions: threelevel (EQ-5D-3L), child-friendlyversion (EQ-5D-Y),and fivelevel (EQ-5D-5L). Generally, each version begins by asking about mobility (MO) followed by questions on self-care (SC), usual activities (UA), pain or discomfort (PD), and anxiety or depression (AD). This study examineswhether changing the order of the EQ-5D questions changes their responses.Methods: As part of a national survey, adults from the general population (N=4747) were asked the 15 EQ-5D questions(3 versions, 5 questions each)in random order. The majority (4272; 90%) completedall questions. Wefirst assessedthe influence of question positionon responses using chi-squared testsand piece-wise linear probability models. Furthermore,we testedwhether respondent characteristics―includingage, gender, race/ethnicity, education, household income, and self-reported general healthon a 5-level scale and 101-point visual analogue scale―modifiedthe ordereffect(if any).Results: A quarter of all EQ-5D responses (25.0%) were greater than Level 1 (no problems), but this likelihood was 2.5% higher when asked first (27.5%). Overall, the likelihood of reporting problems appearedto decreaseup to the tenth position (0.4% for each position) then flattened; however, thiseffect is largely attributedtothePD and AD questions. For example, the likelihood of reporting PD problems increasedfrom 26% to 28% whenPD was asked first(AD changedfrom 48% to 51%). However, the effect appearedto be largely among respondents who report “Good” health or better.Conclusions: Advancing the PD or AD questions to be asked firstled to a smallincreasein reportinga problem, particularly among healthy respondents. Although it is important to recognize that the current EQ-5D question order may weakly underrepresentPD and AD problems, the findings from this study appear tosupport maintaining the current questionorder (i.e., no randomization).Further research is needed in clinical populations. | Benjamin Craig | Valuation | 35560 | Completed | 2015 | |
| 2016600 | Pre-conference EQ-5D Short Course for South China Pharm-economics Forum 2016 | One half-day short course on EQ-5D on December 9, 2016 for attendees of the 4thPharmacoeconomic Forum of South China in Dongguan, China | Nan Luo | Education and Outreach | 13790 | Completed | 2016 | 2016 |
| 2016620 | A head-to-head comparison of eight country-specific EQ-5D-3L and EQ-5D-5L value sets in eight patient groups and a student cohort - Why discriminatory power varies with versions, value sets and subgroups? | The current study described the first head-to-head comparison of seven country-specific EQ-5D-3L and EQ-5D-5L value sets comparisonin a comprehensive pooled dataset. Our study had two research questions:Do 5L utility values show better performancethan 3L utilityscores in terms of discriminatory poweras a direct result of improved descriptiveprecision?and: What are the factors affectingthis performance? A large multinational dataset, including 3L and 5L data for eight patient groups and a student cohort, was used to evaluate the value sets of Canada, China, England/UK, Japan, the Netherlands, Spain and South Korea.We used distributional analyses and two types of methods exploring discriminatory power: relative efficiency as assessed by the F-statistic, and an area under the curve for receiver-operating characteristics approach (AUROC). Four factors were identified as underlying to differences in discriminatory power: descriptive performance, distributional effects, valuation effects, and country-specific effects. An in-depth investigation led to many interesting insights and robust conclusions. | Bas Janssen | Descriptive Systems | 15000 | Completed | 2016 | 2017 |
| 1890-RA | What are the implications for using different mental health descriptors for the EQ-5D-5L and EQ-5D-Y-5L in valuation studies? A comparison study using DCE | The EQ-5DY-5L joins a suite of EQ-5D instruments that measure and value a person’s health related quality of life (HRQoL) from ‘cradle to grave’. However, if the EQ-5D instruments are to be used to measure and value health across a person’s lifespan, it is important to understand how differences in EQ-5D instruments affect both measurement and valuation of HRQoL. This is particularly important for use of EQ-5D instruments for health technology assessment. A key difference between the EQ-5D-Y/-Y-5L and the EQ-5D-3L/5L is the conceptualisation and description of the mental health dimension, which uses ‘Feeling worried, sad or unhappy’ in the paediatric Y/Y-5L instruments rather than ‘Anxiety/Depression’, as in the adult 3L/5L instruments. There is evidence that respondents report more problems for the mental health dimension when ‘feeling worried, sad or unhappy’ is used. The impact on valuation of using different descriptions for the mental health dimension across the EQ-5D-Y-5L and the EQ-5D-5L has yet to be tested. This study addresses this gap by comparing these descriptors in the valuation context using discrete choice experiment methods. There will be 4 arms in total. Respondents will be assigned to complete DCE choice tasks for either the EQ-5D-5L or the EQ-5D-Y-5L. However, they will see some DCE choice tasks where the mental health dimension is swapped. Thus, respondents assigned to the EQ-5D-Y-5L will see some choice tasks where the mental health dimension from the EQ-5D-5L (i.e. anxiety/depression) replaces the usual ‘feeling worried, sad or unhappy’, and for respondents assigned to the EQ-5D-5L will seem some choice sets that use ‘feeling worried, sad or unhappy’ rather than anxiety/depression. Results from this study will support EuroQol’s goals to provide guidance to users by improving understanding of the transitions between age specific EQ-5D instruments, and to promote the integration of EQ-5D instruments as a way to measure and value health across the lifespan. | Alice Yu | Valuation, Youth | 30582 | Ongoing | 2024 | |
| 2016571 | (Proposal extension) Anchoring discrete choice experiment values at 0=dead for the EQ-5D-Y: additional data collection to control for instrument | Objectives:To date there have been no value sets tosupport the use of the EQ-5D-Y in cost-utility analysis. DCE can be used to obtain values on a latent scale, but thesevaluesrequire anchoringat 0 = dead to meet the conventions of QALY estimation.The primary aim of this study is to compare four preference elicitationmethods for anchoring EQ-5D-Y values. Methods:Four methods were tested: VAS, DCE (with a duration attribute), lag-time TTO and therecently developed‘location-of-dead’(LOD)element of the PUF approach. Adult respondents were asked to value both EQ-5D-3Lhealth states from an adultperspective(considering their own health)and EQ-5D-Y health states from a child perspective (considering the health of a 10yearold child). All respondents completed valuation tasks using all four methods,under both perspectives. For a subset of respondents the instrument was controlled for, i.e. EQ-5D-Y healthstates were valued under both perspectives. Results:Three-hundred and forty-nineinterviews were conducted. Overall, respondents gave lower values under the adult perspective compared to child perspective, withsomevariation across methods. The meanTTO value for health state33333was about equal to dead in the child perspective and worse than deadin the adult perspective. The meanVAS rescaled value for33333 was also higher in the child perspective thaninthe adult perspective. The DCE with duration results followed the samepattern, i.e. positive child perspective valuesandnegative adult perspective values, though themodels were notconsistent. The LODmedian rescaled value for 33333 was negative under both perspectives, and higher in the child perspective. When asked directly about their prioritisation preferences, 65%of respondentsindicatedthat treating adults andtreatingchildrenshould have same priority. Discussion:There was broad agreement across all methods. Values for 33333 tendedto be negativeforthe adult perspectiveand closer to 0for the child perspective. Potentialcriteria for selectinga preferred anchoring methodare presented. We conclude by discussingthe decisionmaking circumstances under whichutilities and QALY estimates for children and adults need to be commensurate in order to achieve allocative efficiency. | Nancy Devlin | Valuation | 5600 | Completed | 2017 | 2018 |
| 2016740 | A Dutch tariff for the Euroqol-5D-Youth | Background: It is unknown how framing of age impacts the valuation of health states within the context of the EQ-5D-Youth. A complicating factor in studying age dependency is that values are usually derived via trade-offs between Qol and life years. Those trade-offs may be calibrated differently across groups, rendering obtained values incomparableAim: To compare health state values across different age groups while accounting for time preferences. Methods: Participants completed a DCE that offered choices between two EQ-5D-Y states with a lifespan attribute attached. The choice model captured the value of a year in full health, disutility determined by EQ-5D-Y, and a discount rate. In addition, a 'QALY composition’ task captured strength of preference for different ways to produce a number QALYs, e.g. 2 years in full health or 4 years in 50% QoL. Participants were randomly assigned to fill out the survey for a hypothetical person of 10, 15 or 40 year. Results: 1938 people administered the survey for a child (35%) adolescent (36%) or adult (29%).Controlling for time preferences, we found strong agreement of health state values across age groups, except for pain which was valued lower for children (-0.43 v -0.52 for extreme pain). We found heterogeneous preferences for QALY composition in all arms and no clear pattern of differences. The probability distribution over response options varied most when levels for lifespan orseverity were at the extremes of the spectrum. People were less certain of their responses for children.Discussion: It seems not possible to compare DCE duration results across age groups, without accounting for differences in time preferences. Likely this result generalizes to TTO. The framing of age on health state values is limited but that might reflect local context in the Netherlands and may not generalize to other countries. | Brigitte Essers | Youth | 39750 | Completed | 2017 | 2018 |
| 2016680 | Screen size & data quality | IntroductionThe EQ-5D is frequently used to understand the development of health-related quality of life (HRQL) following injury. However, the lack of a cognition dimension is generally felt as disadvantageous as many injuries involve cognitive effects. We aimed to assess the added value of a cognitive dimension in a cohort of injury patients.MethodsWe analyzed EQ-5D-3L extended with cognition (EQ-5D + C) dimension responses of 5346 adult injury patients. We studied dimension dependency, assessed the additional effect of the cognitive dimension on the EQ-VAS, and, using the EQ-VAS as a dependent variable, determined the impact of EQ-5D and EQ-5D + C attributes in multivariate regression analyses.ResultsExtreme cognitive problems combined with no problems on other dimensions are uncommon, whereas severe prob-lems on other dimensions frequently occur without cognitive problems. The EQ-VAS significantly decreased when cognitive problems emerged. Univariate regression analyses indicated that all EQ-5D + C dimensions were significantly associated with the EQ-VAS. Exploratory analyses showed that using any set of five of the six EQ-5D + C dimensions resulted in almost identical explained variance, and adding the remaining 6th dimension resulted in a similar additional impact.ConclusionsThe addition of the cognition dimension increased the explanatory power of the EQ-5D-3L. Although the increase in explanatory power was relatively small after the cognition dimension was added, the decrease of HRQoL (meas-ured with the EQ-VAS) resulting from cognitive problems was comparable to the decreases resulting from other EQ-5D dimensions. | John Hartman | Valuation | 14000 | Completed | 2016 | 2017 |
| 2016690 | DCE Learning curves | ABSTRACT: Introduction: The use of discrete choice experiments (DCEs) to value health outcomes captured by the EQ-5D has gained popularity in recent years. Research on DCE’s suggests they may be used as a standalone technique to produce values on a quality-adjusted life year (QALY) scale, and online DCE’s may one day supplant more conventional interviewer-based techniques due to their lower costs and ease of use. However, DCE’s are not without their own issues. The complexity of the choice task may be cognitively burdensome, forcing respondents to adopt heuristics. This may induce biases in the results.Common heuristics in DCE may include magnification (non-attenuation; e.g., only looking at lifespans), horizontal blindness (always choose left option), or favoring the status quo (e.g., choosing the option that most resembles current health). The sequence order may also play an important role in heuristics: arespondent may begin the survey with undeveloped preferences and base responses on previous questions, not true preferences. Some individuals may experience burn out and only resort to heuristics measures after a certain number of questions. Methods: Using two recently completed DCE surveys of the US general population (N=15,292), I tested for common heuristic approaches to an EQ-5D paired comparison task. An example paired comparison task may ask for an individual if they prefer (A) 10 years in health state 33333 or (B) 6 years in health state 11111. Each survey asked between 20-30 paired comparisons. Results: The analysis showed significant evidence of heuristic patterns and sequence effects in each study. As the survey progresses, individuals increasingly prefer the option with the longer lifespan (p-value<-0.01). Time trade-off (TTO) pairs suffer from a significant right bias where there is nearly a 5% difference (59% vs 54%) in choice probability depending on whether or not the option was presented on the right. The pairs an individual has previously seen also has an influence on future choices (p-value<0.01). Individuals exposed to easier pair choices in a moderate state (one option was preferred 80% of the time) at the beginning of the survey were more likely to exhibit lexicographic preferences for the entire survey than those who were given difficult pair choices with severe health states (these had a 50/50 split) to start (19% vs 15%). Conclusion: It is important for researchers to consider these issues when designing a choice survey, particularly the interpretation of sequence effects. Many of these biases can be reduced or even prevented given a proper design. Recent econometric advancements in choice modelling (i.e. power function, heterogeneity, lexicographic clusters) can also help reduce the effects of heuristics and sequence on values for health outcomes. | John Hartman | Valuation | 14000 | Completed | 2016 | 2017 |
| 2016660 | How to capture fluctuating health impairments: Testing intensive longitudinal assessment of the EQ-5D-5L in multiple sclerosis | For each topic, a summary of findings, implications for the ILAincluding the respective rationale, and sample quotes from participants are listed in Appendix F | John Brazier | Descriptive Systems | 49437 | Completed | 2017 | 2018 |
| 2016590 | Extension of Variability in DCE Results Ð October 2016 | Background: To date, most models of health preferences are based on logits or probits. Alternatively, ratio-or angle-based models may perform better, such as Zermelo-Bradley-Terry (ZBT). Aims: to comparelogit and ZBT models for the analysis of health preferences. Methods: Using paired comparison responses from seven EQ-5D-5L valuationstudies (Netherlands, China, Singapore, Spain, Canada, Uruguay and Korea), we estimated each model separately (i.e., 20 level and one ancillary parameter) and predicted 3125 EQ-5D-5L values. Specifically, fourteen models (7 countries ×2 models) were estimated by maximum likelihood with respondent-level clusters and evaluated by their predictive validity as well as the sign and significance of their parametersand values. Results: The ZBT produced fewer disordered levels (0 vs. 8) and fewer insignificant parameters (p-value<0.01; 5 vs. 32) compared to the logit. Apart from content and statistical considerations, the logit and ZBT estimates were significantly different for 92 (65.7%) level parameters and 6816 (31.2%) EQ-5D-5L values (p-value<0.01). Across the seven countries, ZBT consistently produced a higher pseudo-likelihood and found moredifferences between countries (109 vs. 86parameters, 27696vs. 2090027696X values). Conclusions: Compared to the logit, ZBT fit the choice databetter and producedfewer inconsistencies between levels.The EQ-5D-5L values were significantly different between the models.With improved fit and content validity, differences between countries became more evident. The results here confirm previous findings and hint at the potential benefits of geometric analysis in other forms of health preference research. | Mark Oppe | Valuation | 9500 | Completed | 2016 | 2017 |
| 20170480 | Valuing Health-State: An EQ-5D-5L Value Set for Ethiopians | Objectives:Thereis a growing interest inHealth Technology Assessment and economic evaluationsin developing countries like Ethiopiausing measures such as EQ-5D-5L to undertake cost utility analysis. However, the main challengeislack of local population value setswhich are recommended in most countries as they reflect local preferences.Hence, this study aimed to obtain social preference and establish an EQ-5D-5L value set from Ethiopian general population.Methods:Anationally representative sample (n= 1,050) wasrecruited using stratified multi-stage quota sampling technique. Face-to-face, computer-assisted interviews usingthe EuroQol Portable Valuation Technology (EQ-PVT) software of composite time trade-off(c-TTO) and discrete choice experiments (DCE)were undertakento elicit preference score. EQ-PVT protocol feasibility was pilottested in a sample of the population (n=110).A hybrid regression model combining c-TTO and DCE data was used to estimate the final value set.Results: In the pilot study,acceptability of the tasks was good and there were no special concerns with undertaking TTOtask. The predicted value for the EQ-5D-5L ranged from-0.719to 1. The coefficients generated from a hybrid model were logically consistent.Anxiety/depression showed the most impact to utility decrementof 0.4578, and self-care influenced the least 0.2224. The maximum predicted value beyond full health was 0.9741 for the ‘11112’ health state. Conclusions:This study established Ethiopian value set for EQ-5D-5L on the basis of c-TTO and DCE. It is expected to facilitate health economic evaluations, health-related quality of life research and to inform decision making in Ethiopia.Keywords:Discrete choice experiment, EQ-5D-5L, Ethiopia, Health state valuation, Quality of life,Time trade-off, Utility. | Abraham Gebregziabiher | Valuation | 28833 | Completed | 2017 | |
| 20180500 | Reliability and validity of using EQ-5D-5L among healthy and adolescents with major mental disorders in Ethiopia | Background: TheEQ-5D, a generic measure of health-related quality of life (HRQoL) has been validated and used in healthy and with different disease conditionsof children and adolescents. The objective of this study was to test whetherEQ-5D-5L is feasible, reliable, and valid to use among healthy and adolescents with major mental disorders.Methods: A cluster sampling strategy was used to select 2,00 study participants from all of the ten sub-districts comprising the Butajira Rural HealthProgramme(BRHP). At each of the subdistrict, the supervisor selected one class from the school, then after identification of the class 20 students from the class between the age of 12 and 17 were interviewed using an Amharic EQ-5D-5L and EQ-VAS by trained and supervisedinterviewer. Participant with major mental disorders including; schizophrenia, bipolar and depressive disorders were recruited from Butajira major mental disorder center. For each case 100 participants were interviewed consecutively. Two way mixed-effects model absolute intraclass correlation coefficient, Kruskal-Wallis rank test and chi-square(X2)-tests were used to determine the reliability, and validityof the instrumentrespectively. Results: Fourinterviewers completed 500 interviews. From participants who completed the interview, a total of 497 (201 generaladolescents and 296 of major mental disorders) participants formed the sample for analysis.Intraclass correlation coefficient (ICC)was high for all EQ-5D-5L dimensionsand EQ-VAS, which lieswithin the goodagreement rangeacross all respondents (ICC > 0.7, p< 0.001). Theresultsshow that the Amharic EQ-5D-5L has a significant known group validity as shown by the difference in scores among various disease group, age category, educational status, presence of chronic illness history and religion of participants.Conclusions: The Amharic EQ-5D-5L appears to be an appropriate measure for measuring health related quality of life in various adolescent population groups in Ethiopia. | Abraham Gebregziabiher | Descriptive Systems | 13450 | Completed | 2019 | 2020 |
| 20170100 | Measuring and valuing patient preferences in randomized clinical trials | Randomized clinical trial (RCT) is the ‘gold standard’ design to produce high quality evidence on safety and efficacy which is required for regulatory approval of new drugs. In Canada, cost effectiveness evidence is also formally considered to assess the overall value of new drugs before reimbursement decisions are made. Canadian Institutes of Health Research who requests cost effectiveness analysis be part of its RCT proposals catalyzes knowledge exchange between clinical researchers and health economists. As a result, more RCTs are incorporating the cost effectiveness design in which measuring and valuing patient preferences is a key component. Basic knowledge on how to measure and value patient preferences alongside a RCT is useful and perhaps necessary for clinical researchers, especially those who don’t have access to health economists. This first part of the workshop will introduce how to measure and value patient preferences using direct approaches through commonly used elicitation techniques and indirect approaches using pre-developed preference-based instruments. Hands-on exercises with the EQ-5D-5L used as an example to allow participants to practice these methods. The EQ5D-5L is a widely used instrument with its Canadian specific value set was recently developed. The strengths and limitations of applying these methods in the setting of RCT will be reviewed. Relevant recommendations from recently released Washington Cost Effectiveness Panel and CADTH Economic Evaluation Guidelines will also be highlighted. The second part of this workshop will use a hypothetical RCT to incorporate the EQ-5D-5L in the trial design, data collection and analysis, and interpretation, as well as its use in the cost effectiveness analysis. | Feng Xie | Valuation | 3690 | Completed | 2017 | 2017 |
| 20190460 | Valuation of the EQ-5D-5L in Italy | BackgroundItalyis the fourth largest economy of Europe, and it has the fourth largest population. The healthcare system is decentralized between national and regional levels. The national level ensures that a nationally statuary benefit package is available to every resident in every region. Regions are allowed to reimburse additional technologies not included in the national benefit package. Economic evaluations are used for pricing and reimbursement decisions at both the national and regional levels. The EQ-5D is generally used as the main outcome for economic evaluations, as demonstrated by more than 40 patent requests from Italy only in 2018. Although an EQ-5D-3L value set is available and commonly used, an EQ-5D-5L valuation study has not yet been conducted. The current research proposal aims at developing a value set for the EQ-5D-5L in Italy.Proposed methodsPreferences will be collected using the EuroQol standardized valuation protocol available on lime survey(EQ-VT V2).This will involve using the composite time trade-off (cTTO) alongside adiscrete choice experiment (DCE). The minimum sample size will be of 1,000 participants. Participants will be recruited in public places, such as universities, libraries and hospitals, using 10recruiters i.e. interviewers in 5 cities. Interviews will be conducted by 10 interviewers selected among PhD students, researchers and other academic affiliates. Standard QCcontrols will be employed. To inform the modelling choices, GLS, Tobit, logit, probit, multiplicative and hybrid models will be fitted to the data. Models will be assessed in terms of monotonicity, errors and predictive accuracy. | Aureliano Paolo Finch | Valuation | 83950 | Completed | 2020 | |
| 2015340 | EQ-5D for monitoring population health: a comparison of general population survey data in Argentina, Brazil, Chile and Uruguay | Objectives: To describeself-reportedhealth related quality of life (HRQL) fromgeneral population of Argentina, Brazil, Chile and Uruguay and to report population norms based on EQ-5D.Methods:We included data from the 2009 national health risk survey in Argentina (n=41,392) and from the participants of theEQ-5Dvaluation studies Brazil(n=3,362, Viegas Andrade 2013),Chile (n=2000, Zárate 2011) and Uruguay (n=792). We estimated mean VAS values and EQ-5D index by age, gender and the presence of limitations in any of the EQ-5D domains. We also explored the most frequent health states (those which include at least 90% of the population). Results:Self-rated mean VAS was 76.5 (IC95% 76.2-76.8), 83.8 (83.3-84.3), 75.7 (74.8-76.6) and 80 (78.6-80.9) in Argentina, Brazil, Chile and Uruguay respectively. The percentage of individuals without limitations was 60.9%, 44.3%, 49.8%, and 44.6% in Argentina, Brazil, Chile and Uruguay respectively. The EQ-5D TTO-based index valuesshowed slightly higher values in Argentina and Uruguay (0.910; CI95% 0.907-0.913 and 0.957; CI95% 0.951-0.962) than in Brazil and Chile (0.892, CI95% 0.888-0.897 and 0.80, CI95% 0.79-0.81). In all countries, both VAS and EQ-5D index values decreased with increasing age, andwere lowerin females. Out of the 243possible EQ-5D-3L health states only eight were present in at least 90% of the populationin Argentina, nine in Brazil, and 19 in Chile. In Uruguay, only 33 out of the possible 3125EQ-5D-5L health states were referred at least by 90% of the participants. In general, the prevalent states were the ones with mild limitations in pain-discomfort, anxiety-depression ormobility. Conclusions: This is the first collaborative work between Latin-American EQ-5D researchers from four countries. This study summarizespopulation norms for the region that can be used in decision-makingas well as in research | Lucila Rey Ares | Populations and Health Systems | 15000 | Completed | 2015 | 2017 |
| 2013100 | Preference Inversion in the EQ-5D-5L | Background: Evidence on preference inversion(i.e., where respondent preferences contradict the adjectival scalein health-related quality of life [HRQoL])has become increasingly apparent for the EQ-5D-5L, specifically in the last level of each item. This perception has anecdotally deteredthe adoption of the 5Lin the United States. Aims: 1.To directly test preference inversion between levels 4 and 5 of each itemby asking single intradomain pairs:Pr(L4>L5) L5) > Pr(L3>L4) Methods: To test for these inversionsempirically, I propose to create a survey containing a series of paired comparisons(listed below)using a nationally representative sample of the United States respondents. For each of the 10 intradomain and 200 interdomain pairs, 50 responses will be collected such that 2,635 respondents each complete 4 pairs (i.e., 50x(10+200)= 2635x4).Implications: Regardless of outcome, a better understanding of preference inversion has substantial implications for the EQ-5D development, particularly for its valuation and dissemination. | Benjamin Craig | Valuation | 9182 | Completed | 2013 | 2013 |
| 2016060 | HTAi Workshop: Engaging patients and general public in health technology assessment: Measuring and valuing health preferences | Feng Xie | Education and Outreach | 23220 | Completed | 2016 | 2016 | |
| 2016440 | Taiwan valuation study for the EQ-5D-5L | Objectives:This study was aimed to develop thefive-level EuroQol five-dimensional (EQ-5D-5L)value set for utility calculation in the Taiwan population. Methods: The 1000 representative sample aged 20 years and over was recruited from six geographic regions in Taiwan. In the computer-assisted interview using EQ-VT 2.0, participants completed 10 composite time trade-off (C-TTO) tasks and 7 pair discrete choice experiment (DCE)tasks. The value setsweregenerated and compared in C-TTO, DCE and hybrid modeling using twenty dummy variables as main effectsapproach.Results: A representative sample of the Taiwan general population completed the valuation study. The hybriddatawithleft-censored at -1was considered as themost preferred model for EQ-5D-5Lvalue set in Taiwan.The possible values for the predicted utility ranged from -1.0259to 1. Conclusions:A representative EQ-5D-5L value set derived from hybrid modeling is now available for Taiwan.The EQ-5D-5L tariffcan facilitatethe health economic evaluations and health decision making on resource allocation under national health insurance program in Taiwanafterward. | Hsiang-Wen Lin | Valuation | 24000 | Completed | 2016 | 2017 |
| 2016520 | Measurement Properties of the EQ-5D-5L: Comparative Performance with other Measures and Determining Minimal Important Differences in Canadian Populations | not available | Jeffrey Johnson | Populations and Health Systems | 120000 | Completed | 2016 | 2018 |
| 2016500 | Second Annual End-user and Scientific Advisory Committee Meeting | Our proposalwas to host a meeting, notundertakea study. Through our meeting we educated and informed attendees on theuse ofEQ-5D and PROMs,including HQCA and AHS partners, Alberta Health Ministry Representatives and researchers from universities and organizations across Alberta and Canada.This has paved the way for more end-users of the EQ instrument which will lead to increased applications and more data being generatedand therefore, moreinformation to potentially call upon for future research.We also gained insight from end-users, particularly in the primary care setting, as to important implementation research questions to address. This input helps to inform our research agenda, about how EQ-5D is applied in PROMs programs.For our 3rd Annual APERSU End-User meeting, we will put the call out earlier to obtain a keynote speaker. We were waiting for a very long time to for a response from one of the people we contacted, in hindsight, we should have looked for alternates sooner. We have had comments from some potential attendees that the dates of our meeting conflicted with other meetingsbut with the diverse group of potential participants, it is difficult to get a time that would suit all. | Jeffrey Johnson | Populations and Health Systems | 15000 | Completed | 2016 | 2016 |
| 2012020 | German tariff for EQ-5D-5L | The initial preparation of the study was undertaken between November 2012 and September 2013. Due to the results of the first wave of EQ-5D-5L valuation studies in 2012/2013and the following moratorium, it was decided to postpone the data collection of the main study in Germany and to conduct an initial experimental pre-studyto test the protocol updates in Germany.The final report was already signed-off and the results were published (Ludwig et al. Valuation of the EQ-5D-5L with composite time trade-off for the German population -an exploratory study. Health Qual Life Outcomes 2017;15(1):39).The results of the pre-study contributed to the development of EQ-VT version 2.0 (inclusion of feedback module). After consulting the Valuation Methodology Working Group in September 2014, it was decided to apply the improved valuation protocol2.0 in the German EQ-5D-5L valuation study for the first time worldwide. Interviewer training and pilot interviews were carried out in November2014. Data were collected from December 2014 to March 2015by 19 professionalinterviewers in six cities and surroundslocated in different parts of Germany. A detailed analysison the complete data set was carried out from May2015to March 2017 and (preliminary)results were stepwise presented on several conferences. A manuscript for journal submission was prepared and submitted in August 2017. | Wolfgang Greiner | Valuation | 62505 | Completed | 2012 | |
| 2015450 | A head-to-head comparison of nine country-specific EQ-5D-3L and EQ-5D-5L value sets in eight patient groups and a student cohort | not availabe | Bas Janssen | Descriptive Systems | 14250 | Completed | 2016 | 2016 |
| 2015390 | Can social care needs and well-being be explained by EQ-5D? Analysis of the Health Survey for England dataset. | Introduction: It is becoming increasingly important for decision makers to be able to measure and compare diverse outcomes arising from health and socialcare interventions. Use of different outcome measures for assessment in the two sectors creates difficulties for comparisons and for capturing the multiple outcomes in a single metric. EQ-5D is the preferred measure of health-related quality of life (HRQoL) by key decision-makers in the UK. However, there is currently little clarity about how it is associated with other outcomes used in social care. Method: We empirically compared responses to EQ-5D with responses to measures of social care needs and subjective wellbeing using a large cross-sectional dataset of the UK general population, the Health Survey for England.Bivariate and multivariate regression analyses wereused to examine whethersocial care needs,measured by the Barthel Index,in people aged 65 years and over could beexplained by EQ-5Dresponsesand wellbeing measures; and how much ofthe variation in mental health and subjective well-being in the general population, as captured by GHQ-12 and WEMWBS, are explained by the EQ-5D. Results: Our study found that responses indicating poor health and wellbeing in EQ-VAS, EQ-5D Index, GHQ-12 summary score and WEMWBS pointspredicted a need for social care. Investigation of dimensions used to construct the measuresfound that two of the EQ-5D dimensions -self-care and pain/discomfort -were significantly associated withneed for social care. In addition, individuals with extreme anxiety/depression(compared to notanxious/depressed) and unable to perform usual activities (compared to no problem in performing usual activity) were more likely to report need for social care. None of the GHQ-12 dimensions were significantly associated with the Barthel Index. Two dimensions from WEMWBS,‘been feeling useful’ and ‘had energy to spare’ were significantly associated with the Barthel index. Amongst background characteristics, age and limiting longstanding illness were significant predictors of social care need across all the models. Conclusion: The need for social care,which largely depends on one’s ability to perform personal day-to-day activities,appears to be significantly associated with those EQ-5D dimensions that capture physical health and mental health.This offers the EuroQol group a strong ground to pursue how best EQ-5D instrument could be made available in capturing outcomes of social care, increasing comparability in economic evaluations between the health and social care sectors. This may includereviewingdescriptive system and/or any future development of additional or amended EQ-related questionnaire. | Jeshika Singh | Valuation | 11800 | Completed | 2015 | 2016 |
| 2016160 | Conventional and perceived change in health-related quality of life of trauma patients: what role does recall bias play? | Background:Retrospective assessment of pre-injury health-related quality of life (HRQL) is frequently used to measurechange from pre- to post-injury HRQL. However, retrospective measurement may be confounded by recall bias. It isassumed that presence of recall bias is influenced by several factors, such as the measurement scale or the instrumentthat is used, the measurement schedule, and the presence of a substantial health event during the follow up period.This study empirically tests these assumptions by comparing pre-injury EQ-5D summary scores, EQ-5D profiles andvisual analogue scale (EQ-VAS) scores of trauma patients, as recorded 1 week and 12 months post-injury, respectively.Methods:A sample of 5371 adult trauma patients who attended the Emergency Department (ED) followed by hospitaladmission, received postal questionnaires 1 week (T1) and 12 months (T2) post-injury. The questionnaires contained itemson pre-injury health, in terms of EQ-5D3L and EQ-VAS.Results:Onethousandonehundredsixty-sixcompleteddatapairs with T1 and T2 pre-injury data were available. Meanpre-injury EQ-5D summary scores were 0.906 (T1) and 0.905 (T2), respectively, with moderate intertemporal agreement(intraclass correlation coefficient (ICC) T1T2 = 0.595). In absolute terms, 442 (37.9%) respondents reported adifferent pre-injury EQ-5D profile at T2 compared to T1. The least stable EQ-5D dimension was pain/discomfort (20.2% reported a change). Mean T2 pre-injury EQ-VAS score was significantly higher than meanT1 pre-injury EQ-VAS score (T2 84.6 versus T1 83.3). Multivariable logistic regression analysis indicated thatlower educational level, comorbiddisease and having PTSD symptoms were independent predictors ofchange of pre-injury EQ-5D profile.Conclusions:Despite one third of respondents reported a different pre-injury health level, if asked for on twointerview occasions separated by 1 year, on the group level this difference was nil (EQ-5D summary score) to small (EQ-VAS). The consistent symmetrical pattern of change suggests random error to play the largest role. Intertemporal reliabilitywas the same in EQ-5D profiles vs. EQ-VAS scores, ruling out scale effects. Particularly certain trauma subgroupsshowed highest distortion. While group comparisons may be trusted, in pre-post analysis and repeated measure analysisthe individual injury impact and recovery pattern may be wrongly estimated.Keywords:Health-related quality of life, EQ-5D, Recall bias, Trauma population | Gouke Bonsel | Populations and Health Systems | 64281 | Completed | 2016 | |
| 2014025 | Supplementary funding 5L value set study England: Sheffield | Ben Van Hout | Valuation | 24000 | Completed | 2014 | ||
| 2016560 | Investigating the difference between hypothetical and experienced valuations: the case of mistaken expectations | Little is known about why experienced and hypothetical health state preferences differ. Patients and the public may have inherently different preferences, but it is also possible that the public does not have accurate expectations about what life is like in ill-health. Hypothetical health state valuations may thus differ from experienced based valuations, for example, if the public is mistaken in how ill-health affects their enjoyment of life. This study investigates the extent to which: (i) the public’s expectations about life in a health state are associated with their valuation of that health state, and (ii) the public’s expectations are similar to the experience of patients.We collect expectations of the public on five consequences (enjoyment, relationships, independence, avoiding being a burden, and activities) using an online survey of 1300 UK residents (completed August 2017). Participants were asked to imagine living in five EQ-5D-5L health state, to value them using the Visual AnalogueScale (VAS), and to report their expectations on the six consequences for them. Data on the experience of patients was available from the Multi Instrument Comparison study, where individuals self-reported the EQ-5D-5L and five consequences.To assess theextent to which the public’s expectations about life in a health state are associated with their valuations of that health state, we compare the explanatory power of two models of the VAS valuations, one using the EQ-5D-5L classification system as independent variable, and one using the consequences as independent variables. To assess the extent to which the public’s expectations are similar to the actual experience of patients, data on public expectations and patient experiences were jointly modelled. Separate regression models were estimated for each of the consequences (enjoyment, relationships, independence, avoiding being a burden, and activities) using the EQ-5D-5L classification system as independent variables with interaction effects to account for the differences between expectations and experience. For the first aim, preliminary analysis suggests that the expected consequences better explain VAS values than the health state classification system itself, indicating that health is at least partly valued based on the expected consequences.For the second aim, preliminary analysis suggests that the public generally overestimates the effect of ill health on the consequences (e.g., they expect ill health to affect their relationships more than patients report it actually does). The difference between the public’s expectations and patients’ experience differs for the health dimensions: (a) the general public overestimate the effectsof mobility and self-care problems more than they overestimate usual-activities and pain/discomfortand (b) the general public underestimate the effect of anxiety/depression problems.The results of the preliminary analysis study suggest that differences between patient and public preferences may be driven by differences between expectations and experiences of what life is like in ill-health, and that these differences differ systematically per health dimension. In addition, the EQ-5D-5L tariff that elicits preferences using hypothetical valuations of the general public may overestimate the importance of mobility compared to anxiety/depression, potentially suggesting that existing tariffs could be a sub-optimal reflection of the publics’ informed preferences. | Milad Karimi | Valuation | 69541 | Completed | 2016 | 2017 |
| 2016270 | The EQ-5D-Y in a clinical sample of children and adolescents with asthma, diabetes and rheumatoid arthritis: convergent validity, agreement between self-and parent-reports as well as sensitivity to change | Purpose: The EQ-5D-Y assesses child and adolescent health-related quality of life(HRQoL) by means of five items on mobility, self-care, usual activities, pain/discomfortand anxiety/depression as well as a Visual Analogue Scale (VAS) on the self-ratedcurrent health state. The present study investigates predictors of self-reported HRQoLaccording to the EQ-5D-Y in a mixed clinical sample of chronically ill children andadolescents based on longitudinal data.Methods: Data from the German Kids-CAT study on children and adolescents withasthma, diabetes and juvenile arthritis gathered over a period of six months wereanalyzed (n=310; aged 7 to 17 years; 48 % female). Socio-demographic as well asdisease- and health-specific predictors were investigated. Generalized linear mixedmodels and linear mixed models served to examine both the items and the VAS of the EQ-5D-Y.Results: Ceiling effects for the EQ-5D-Y were detected in the analyzed sampleindicating low burden of disease. Results of longitudinal regression-based analysesrevealed effects of health complaints on all investigated domains of HRQoL. Further,besides age- and gender-specific effects, associations of HRQoL with disease control,the duration of the disease as well as mental health problems were found.Conclusions: Our findings support the content validity of the EQ-5D-Y and underlinethe necessity to address subjective health complaints and mental health problems inthe care of children and adolescents with asthma, diabetes and juvenile arthritis. | Ulrike Ravens-Sieberer Ravens-Sieberer | Youth | 15000 | Completed | 2016 | |
| 20180280 | EQ-5D-Y valuation study in Japan | As The Japanese Ministry of Health, Labour and Welfare (MHLW) plansto introducefull-scale cost-effectiveness analysis for the pricing of drugs and medical devices inFY2019 (April 2019),the National Institute of Public Health (NIPH), to which the principal investigator belongs, was asked to develop preference-based measures andscoring formula. Accordingly,this study aimsto derive ascoring weight to convert Japanese EQ-5D-Y responses to EQ-5D-Y index values in timeforimplementation(i.e., by the end of March 2019). Valuation methods areprincipally similar tothose used in other countriesand in accordance withthe methodological consensus of the EuroQOL EQ-5D-Y valuation group (May29,2018).We ask 1000 laypeople (aged 20 yearsor older) to respond to both the DCE and TTO in aface-to-face survey;200 respondents arerecruitedfrom five cities (Tokyo, Osaka, Fukuoka,Niigata, and Okayama), as in the EQ-5D-5L valuation survey.To collect respondentdata, EQ-VPT developed by the EuroQOL group is used. Before starting the valuation survey, EQ-VPTneeds to be translatedintoJapanese. DCE responsesare analyzed by a conditional logit model including dummy variables indicating each level of five domains. Latent DCE scores are converted to utility scale by mapping to TTO scores. Finally,we can obtain a scoring formula forEQ-5D-Y thatreflectsJapanese preferences. It may bemeaningful to compareitwiththeJapanese EQ-5D-5L preference weight. | Takeru Shiroiwa | Youth | 0 | Completed | 2018 | 2019 |
| 2014050 | Hong Kong participation BTD-WTD split experiment | Carlos Wong | Valuation | 9443 | Completed | 2014 | ||
| 2015290 | The Effect of Timing, Duration, and Lifespan on Choice | not available | Benjamin Craig | Valuation | 68439 | Completed | 2015 | |
| 2016390 | Analyzing self-perceive health status using the EQ-5D in Latin America: 1st approach to the Gallup 2007 World Survey (19 countries) | The Gallup World Poll (GWP) has been conducted globally since 2005, and it represents an important tool for local decision-making. The 2017 GWP version reaches out to 160 countries covering 99% of adult population in the world. It takes representative samples for each country in order to extract information about main global issues such as Law and Order, Food and Shelter, Job Creation, Migration, Financial Life, Personal Health, Civic Engagement and Evaluative Well-Being. Also, some specific topics are included in each version according to regional scenario and needs. Summary measures of population health are known to be of great importance due to the potential use in monitoring the health of communities, informing policymakers and being an input for cost-effective analysis as well as other health outcomes research. The 2007-2008 GWP version considered perceptions of Health-related quality of life (HRQoL) in 22 Latin-American countries representative of people aged 15 and over. This report presents the first regional overview of the health perceptions of Latin-American people by analyzing the data from the GWP. | victor zarate | Populations and Health Systems | 15000 | Completed | 2016 | 2017 |
| 2013080 | An investigation into the meaning of, and the relationship between, Happiness, Health and Health status measurement | Happiness, health and health status measurement was the title of the triple H project.Happiness was an inspiration. However it turned out tobeonly a segment of a set offeelings. And the set of feelings was only a segment of the set of subjective well-beingmeasures. In turn the set of subjective well-being measures then was only a segment of well-being measures. So it may be disappointing,but happinessis not the golden key to open upaPandora’s Boxfor the EuroQol Group. It might even be a fata morgana.Health perception and health status measurement provided most of the inspiration for thesuggestions below. Feelings are includedand that might be an area of research where theexperience of the EuroQol Group can be helpful. And there seems to be ample scope formore sophisticated measurementsof those feelings. Over time the perception of health haschanged. In 1987 measuring health status with a very few marker dimensions wastrendsetting, but theICF and questionnairesbased on the ICFhave arrived on thesceneasoffshoots. Thesemight be game changers in the realm of health status measurement.Without doubt the creativity and experience of the Group will ensure thatthis groupofresearchers will stay ahead of the game. The suggestions belowhopefullyprovide inspirationfor that endeavour | Frank De Charro | Others | 30000 | Completed | 2013 | 2014 |
| 2014170 | Directly eliciting personal utility functions: a feasibility study of an innovative approach to valuing HRQoL | Introduction: In 2015, we introduced the concept of Personal Utility Functions (PUFs) at the Scientific Plenary meeting (Devlin et al 2015), and shared some promising early results from pre-piloting.In contrast to existing valuation methods –all of whichrely on presenting health states and inferring from respondents’responses what their preferences are with respect to the descriptive system, the PUF approach asks respondentsto consider the dimensions and levels of the EQ-5D, and takes them through a series of tasks to help them attach weights to reflect the importance of these relative to each other.We also ask respondentsto identify their anchor for dead = 0.An important emphasis of the approach is on helping respondentsreflect and deliberate on their answers as they construct their PUF. Subsequent to the Plenary, we further improved our methods for eliciting PUFs, and conducted pilot interviews with n=76 members of the general public in England and a convenience sample of n=30health outcomes professionals working for Pharmerit (various locations). The aimsof this paper areto (a) report the results from the pilot and (b) demonstrate the way in which the PUFs of individuals can be modelled to obtain a value set. Methods:The method allows for the estimation of each respondent’s own 20 parameter utility function. Descriptive statistics for each element of the PUF tasks are reported as well as distributions of the 20 parameters. Descriptive statistics from the various validation tasks built into the interview are reported and correlated with PUF data on a within-respondent basis to establishinternal face validity.Preference types identified in the dimension and level weighting tasks, and in the placement of dead, are identified and used to inform modelling. An average utility function will be calculated. Additionally cluster analysis will be applied to find whether there are typical groups of respondents.Results:Overall, PD and MO are the highest ranked dimensions (as is the case in many of the value sets generated using other methods) and UA is the lowest ranked dimension.There was a high level of consistency in respondents’responses to the various dimension-weighting tasks. The ratings for intermediate improvements in each dimension (e.g. from MO3 to MO2) shows heterogeneity, both within (i.e. most respondents’ratings differed between dimensions) and between respondents. The results of the validation exercises demonstrate that the PUF algorithm works as intended. The task to identify the individual’s location of dead within the descriptive system worked well.23.7% of respondentsindicated that no EQ-5D health states are worse than dead.The data allow the reporting of individual respondents’ PUFs, and a social value set to be constructed as an average of the PUFs.Conclusion: APUF approachis feasible, and haspotentialto (a) yield meaningful, well informed preference datafrom respondentsand (b) provide individual preference data that can be aggregatedto yield a value set for the EQ-5D. The deliberative approach to health state valuation which it entails also has the potential to complement and improve existing valuationmethods. Further improvementof some elements of the tasks are required, e.g., regarding interactions, and a more systematic approach to the capture and use of qualitative data would be beneficial. | Nancy Devlin | Others | 51622 | Completed | 2014 | |
| 246-RA | Assessing the impact of COVID-19 population health over time: a cross-country comparison between US, Sweden and Norway using the EQ-5D-5L repeated measures | Background: The outbreak of COVID-19 global pandemic hit hard on global economy. Different countries implemented various policies in response, ranging from maximum, partial, to no lockdowns. Study objectives: To assess the impact of COVID-19 on population health using the repeated surveys in Sweden and Norway, and then perform a cross-country comparison with the data from US. Proposed methods: The same survey instrument was used in all 3 countries. The US study was funded by the EuroQol Group (84-2020RA) for 3 waves of data collection. To align with US, the 1st wave data in Sweden and Norway was collected also in April, 2020, and was paid out-of-pocket by the researchers. Findings from the 1st wave had been analysed, a working paper has been developed and available at: https://ihe.se/en/publicering/covid-19-quality-of-life/. Additionally, a comparison study between the 3 countries using the 1st wave data are currently being drafted, along with two manuscripts that are under peer review. To understand the change of COVID-19 impact over time, we aim to collect another wave of data in Sweden and Norway and then compare with US. The next wave of data collection will be aligned with the 3rd wave in US post-election. Main instruments used included: the EQ-5D-5L, the Veterans RAND 12 item health Survey (VR-12), the WPAI, and the PHQ-4. Others questions included respondents’ background, social-economic status, current known COVID-19 status, behaviour changes, and employment status changes due to COVID-19 were also included in the survey. | Ning Yan Gu | Populations and Health Systems | 29840 | Completed | 2020 | |
| 20180660 | Developing an EQ-5D-3L Value Set and Population Norms for Pakistan – A Pilot Study | Introduction:Allocation of very limited healthcare resources in Pakistan led to issues of equity, accessibility and fairness. Despite the high burden of disease and resource constraints in developing countries, there is limited use of patient-centered evidences to inform shared medical decision-making and/or resource allocation. To date, population preferences for health states described by the EQ-5D (3L or 5L) are not available for Pakistan, health outcome measurement in Pakistan has almost exclusivelyrelyingon clinical end-points. Aimof the study:The primary objectivesof the present study were to examine the acceptability and feasibility of using the preference elicitation methods that are part of the EQ-5D-3L valuation studies protocol (TTO and DCE)with the Pakistani population and to explore the impact of contextual factors (e.g., culture, religion) society on the preferences of the Pakistani population and on the usefulness of TTO and DCE. Methods: A total sample of 105respondents, 75literate and 30 illiterate adults aged between 18 and 65 years were selected using conveniencesampling technique to participatein this pilot study. Urdu version of EQ-5D is already available and was used for the present study. The EQ-PVT components including instructions and health state descriptions were translated to Urdu. This study involved the use of quantitative and qualitative research methods. The quantitative component involved piloting the EuroQol valuation studies protocol using the EuroQol Portable Valuation Technology (EQ-PVT) including Time-trade-off (TTO) and discrete choice experiment (DCE) without duration techniques. The EQ-5D-3L, the demographic questionnaire were verbally administered by the interviewers, and the TTO and DCE questions were illustrated using PPT graphical presentations to the illiterate respondents. The qualitative component involved conducting a semi-structured interview with a sub-set of respondents; interviews were audio-recorded andwere conducted until data saturation on key themes is reached. Recorded interviews were transcribed by professional transcriptionist. Content and thematic analysis was used to analyze this data. Quantitative and qualitative data was analyzed side-by-side to answer questions around feasibility and appropriateness of the used methods. Choice models were conducted on DCE and TTO data to evaluate the impact of health domains on the choice outcomes. Results:Compared with literate respondents, illiterate respondents were more likely to be older, unemployed, had lower education/income,and reside in rural areas; in addition, they are more likely to to speak Punjabiand have family members living in the same householdwith lessincome earning members; more over, they are more likely to report lower self-reported health. In all dimension, there is a much better distribution of responses across the levels in the 5L version compared to the 3L version, especially in the mobility, pain/discomfort, and anxiety/depression dimensions. Overall, quality control indicators were similar between literate and illiterate respondents. Although not significantly different, number of non-traders (those who do not trade any years for any health state irrespective of severity) was slightly higher in illiterate respondents. DCE estimates suggested that impact of health impairment on usual activities imposed highest influences on how respondents made their choices. And, presence of moderate problems in mobility was most likely led to respondents avoid choosing to be in that particular health state. The range of TTO values for the two groups was somewhat similar. Majority ofthe respondents reported that religion had noimpact on their responses(literate or illiterate). In addition, literate respondents indicatedthatno response of cultural beliefs on their responses while most of the illiterate respondents highlighted the impact of cultural norms on their responses, especially self-care. Conclusion:The results of this pilot study indicate that using the preference elicitation methods (TTO and DCE) is feasible, practical and acceptable with the Pakistani population. The usefulness and practicality of graphical illustrations of health dimensions/states and preference elicitation exercises with illiterate respondents has also been proven successful; however, incorporating these graphics in the electronic EQ-VT/PVT platform would be more useful. | madeeha malik | Valuation | 19720 | Completed | 2019 | 2020 |
| 20180650 | An international meeting of health system users of EQ-5D in routine outcomes measurement | This meeting was held to bring together users of patient-reported outcome measures (PROMs), specifically, EQ-5D instruments, in routine outcome measurement within healthcare systems around the world. The aim was to create an opportunity to share experience and learnings, and to discuss priorities for research and developments in the use of EQ-5D as a PROM within the system. PROMs users from 8 countries, and representatives from the OECD, participated in this meeting. This 1-day meeting took place in Brussels, on September 17, 2019, with a total of 22 participants. The program, a summary of each presentation and discussion sessions, and the list of participants are provided in these proceedings. | Nancy Devlin | Populations and Health Systems, Education and Outreach | 29815 | Completed | 2019 | 2019 |
| 20180641 | Insight into the higher health state valuation for children compared to adults: effect of 3 valuation methods. Request for budget extension | INTRODUCTION: Available evidence comparing adult versus child stated preferences consistently report higher utility values for children, using the VAS, composite-TTO, DCE-with-death, DCE-with-duration, lag-time-TTO, and location-of-dead-approach, than for adult healthstates (HS). Explanations for these findings have been proposed but not verified.AIM: The aim of this research is to confirm the higher valuation for child compared to adult HS; and to investigate why respondents value child HS differently.METHODS: Eightygeneral public respondents from the UK, Belgium and The Netherlands were invited for a 1.5-hour face-to-face interview. Respondents valued four EQ-5D HS from two perspectives (8-year-old child, 40-year-old adult) using VAS and TTO. Thirty-two of the respondents participated in think-aloud interviewing. Quantitative analyses were carried out in SAS; audio-recorded interviews were transcribed,and a thematic analysis was conducted in NVIVO. Interviews were coded by two researchers using presumption-focused coding. Statements, nodes and themes were reviewed cyclically until consensus was reached within the research team. The aim was to obtain a framework with a limited number of sub-themes(nodes)and uniform statements within each node. A conceptual frameworkwasdevelopeddepicting the relationships between nodes, themes and the life years (LY) trade-off. Qualitative statements made by respondents were contrasted with their quantitative responses. RESULTS: Quantitative results: Statistically significantlyhigher utilitieswere found forchild versusadult TTO values: 0.026, 0.112, 0.377 and 0.294 higher utilities for mild, moderate, severe and worst HS (all p<0.001), whereas significantly higher VAS ratings were only observed for severe HS.Qualitative results:1,221 pages of transcripts were reviewed, resulting in 274coded statements. Fragments were categorised in 5 themes that were present both in child and adult valuation, though with a different interpretation. Two themes encompassed General principles on the value of life: Staying alive is important(Life is worth living even with impaired HRQoL, for children and adults)and Inter-generational responsibility and dependency(All lives are precious: childhood is the foundation yearsand a time for havingnew experiences; adulthood is an important time to take care of the family). Three themes were identified as ConversionFactors:Awareness of poor HRQoL and ability to make decisions(children have difficulties comprehending poor HRQoL and their parents are making choices for them, whereas adults are able to assess their HRQoL and decide for themselves); Adapting and coping(children being flexible and resilient; adults having experience with dealing with difficulties); and the Practical organisation of care(children being unconditionally cared for by their parents; adults being able to organise and pay for care).The five themes were combined into a conceptual framework, labelled the “Circle of life”.Mixed methods: Comparing statements on the value of childhood as a time for new experiences and adults’ roles in life to prepare their children for adulthood, with the same respondents’ TTO values, confirmed the concordance between the qualitative and quantitative results.CONCLUSION: Adult respondents revealed having a lower willingness-to-trade LY for achieving higher HRQoL in children. Child-specific value sets will pose a challenge for pharmacoeconomic evaluation and resource allocation as this might have implications for access to health care for children. | Sarah Dewilde | Youth | 14838 | Completed | 2019 | 2020 |
| 2016180 | Exploring the possibilities for developing a EuroQol instrument for use in very young children: a workshop on feasibility, relevant issues, and potential methodology | Literature is clear that self-report health in young children is challenging• Therefore, proxy (cross-informant) responses are neededEvidence about the agreement between children and informant information vary• But observational measures might be more accurate that proxy (subjective) measures in young childrenWe should think about developing a conceptual framework to use when measuring HRQoL in young children• Should reflect changes over time (e.g. 0-2, 2-3, 4-5 years) | Jennifer Jelsma | Youth | 14821 | Completed | 2016 | |
| 2016140 | Two small DCE projects | Background:Although much progress has been made on identification efficiency in the design of discrete choice experiments (DCE; e.g., D-efficiency), less is known about allocation efficiency, such as number of pairs and number of responses per pair. The aim of this project was to investigate the effectof number of pairs and pair-specific sample sample size on the variability in DCE results(i.e., standard deviation and error). Methods: We examined data from three DCEvaluation studies for the EQ-5D-5Lfrom the Netherlands: two of the studies used face-to-face interviews and onewas an online self-completed survey.This analysis was conducted in three steps:First, we conducted a series of analyses to create a “base case” specificationto act as the primary comparator forsimulationson variability. In these analyses, we applied2 cumulutative density function (CDF) specifications(sigmoidal[logit]and ratio-based[Bradley-Terry]) and 3 estimation techniques (Weighted least squares (WLS) using the observed choice probabilities, WLS using the predicted choice probabilities and Maximum Likelihood). Theresulting base case included 186 pairs with a mean of 183 observations per pair, weighted according to mode of administration(30% face-to-face; 70% online)and specifieda 20-parameter main effects logitCDF estimated by maximum likelihood. Second, we simulated 30, 40, 50, 60, 70, 80, 90 and 100 responsesper pairfor 186 pairs and estimated the base-case model. For each of the 1000 bootstrap iterations, we compared the results to the base caseusing three criteria: median coefficient standard error, the number of rejected predictions, and chi square of predictions. Third, weran aBayesian efficient design algorithm that takeslevel balance into account to generate design sizes of 25, 30, 40, 50, 75, 100 and 150 pairs drawn from the 186 pair design of the base case.We simulated 30, 50 and 70 responsesper pair for each design sizes:25, 50, 100 and 150 pairs(similar to the second step). Results:Among the findingsfrom this brief study, three results areparticularly noteworthy for the EuroQol Group: (1) future attempts tomanuallyenterpairs should take scale into account(i.e., adding the 10 mild pairs to the EQ-VT DCE may have created a bias in logit estimates); (2)the concept of the “pragmatic p” may serve as the basis for determining number of responses per pair and range of pair probabilities in future studies; and (3) Infuture EQ-VT studies, the number of responses per pair should increase (>50) and the number of pairs should decrease (~150). | Mark Oppe | Valuation | 10500 | Completed | 2016 | |
| 2013030 | Development of Thai population-based preference scores for EQ-5D-5L | SUMMARY This research aimed to develop the population-based preference scores for the EQ-5D-5L (the 5L) Thai version. To elicit population-based preference score, face-to-face interviews using the EQ-VT protocol was undertaken in 12 provinces across Thailand. A 1,207 representative sample was recruited using a stratified stage sampling and quota sampling by age and sex. Six interviewers were recruited and well-trained for 1 month prior to work. For TTO valuation, 86 health states were grouped into 10 blocks. Each block contained 10 health states. For the Discrete Choice Experiment (DCE) valuation, 196 health states grouped into 28 blocks of 7 pairs of health states were used. For each participant, the block used for TTO valuation and DCE valuation were randomly selected by the EQ-VT software. The Thai algorithm were estimated using the lead-time TTO method and random effect model with only main effect. It had no constant and interaction terms as shown in below table. No inconsistency among 3,125 possible health states was found. Since no constant in the algorithm, the full health (11111) can be directly calculated from this algorithm without assume to be equal to 1.00. The second best score was 0.968 for state 11112 and the worst score is -0.283 for worst state (55555). The number of health state which the preference score is lower than zero (worse than dead) is 126 health states (4.03%). Mobility had the greatest impact on preference score. The DCE valuation generated inconsistent coefficient in the regression model, indicating the need to further examine the cause of inconsistency and how to deal with these problems. The 5L could be recommended as a preferred health-related quality of life measure in Thailand. | Juntana Pattanaphesaj | Valuation | 38244 | Completed | 2013 | 2014 |
| 2016150 | Two MSc student project placements on EuroQol-related topics | Background: The EQ-5D is a widely used instrument that measureshealth-related quality of life. Recently, the EQ-5D-Y was developed to measure health in children, but it has no independent value set. A recent multi-study country study funded by the EuroQol Research Foundation examined differences in valuations across instruments (EQ-5D vs. EQ-5D-Y) and study perspective (adult vs. child). Objective: To identify differences in valuation between adult’s and children’s instruments and perspectives, and examine how sociodemographic and otherfactors influence health state valuation to build a framework for valuing the EQ-5D-Y for use in health policy. Methods:Data were taken from a study of 805 subjects across four countries (UK, Germany, Spain, and the Netherlands). The subjectscompleted valuation exercises (TTO and DCE) and answered questions about their sociodemographic background and their reactions to the valuation tasks. The study was organized across four arms—using either the standard EQ-5Dor the EQ-5D-Y and within those groups, asked to adopt either an adult or child perspective. A censored regression model and several non-parametric tests were run to observe how particular sample characteristics and individual perspectives influenced valuation. In addition, linear and ordered probit regressions measured the subjects’ ability to imagine a child’s perspective and the effect perspective had on health states and dimensions.Results: There was a significant difference in valuation between adult and child perspective, as well as between the survey used (EQ-5Dand EQ-5D-Y). Nontrading was more common in the child perspective arm. As health severity increases, the children’s perspective had a less negative slope than the adult and was consistently higher valued. Subjects’country of residence had a significant effect on how difficult it was toimagine a child’s perspective, andthere is a difference in valuation between the specific types of child perspectives adopted. Whether or not the subject had children had a positive, significant effect on valuation; severity, survey, and perspective were also significant, as predicted. Conclusion: Subjects adopting a child’s perspective consistently gave higher TTO valuations than those in the adult perspective. The EQ-5D-Y also yielded higher valuations than the EQ-5D, but the extent of its impact must be researched further. Subjects with children also tend toprovide higher values. More insight is needed tounderstand how subjects adopt new perspectives, and future valuation exercises could provide more guidance about the perspective to be used prior to the exercises. | Koonal Shah | Valuation | 10400 | Completed | 2016 | |
| 2014070 | EQVT iteration experiment | TTO data from recent EQVT valuation studies displays troubling patterns, including spikes at 1, .5, 0, -.5, and -1; a lack of non-integer year responses; high levels of logically inconsistent responses, and possible censoring of values below .5 or 0 for a number of respondents. The (ping-pong) routing, has been suggested as part of the reason for the observed spikes. This proposal is submitted under the umbrella of the ongoing effort to improve the EQ-VT system, and aims to determine if two approaches to altering the routing procedure may improve the data quality, particularly in terms of reduced spikes and reduced level of inconsistent responses The alternative procedures are based on the observation that the spikes of elicited values correspond to respondents stating indifference very early in the current TTO routing. At least two distinct effects may contribute to this: satisficing (i.e. respondents stating indifference early in order to shorten the task), anda form of sequential anchoring (inadequate adjustment from the values presented in the TTO task). The two modifications we suggest testing are1) Randomized starting point and routing:Reducing the danger of routing-specific bias through randomizing respondents to a range of different routing procedures. If anchoring and satisficing is at play in all conceivable routing procedures, introducing a variety of routes will distribute the overall bias, so that the common variance across different routing procedures should be a less biased measure of net preferences.As a benefit, varied routing may enable analyses to determine to what extent values are censored at 0.2) Non-stopping TTO:Satisficing is a problem in TTO because the procedure ends as soon as respondents state indifference, creating an incentive for stating indifference at values corresponding to early choices. The second modification attempts to remove this incentive through forcing respondents to perform the same amount of work for all possible elicited values. This is achieved by not stoppingthe preference elicitation once a point of indifference is identified. Deliverables: (1) report to the Exec/VMWG with description findings and suggestions for how to handle routing in the EQVT, (2) Scientific paper on routing bias and satisficing effects in TTO valuation, (3) paper on a non-stopping TTO, and (4) paper on censoring. | Kim Rand | Valuation | 159450 | Completed | 2014 | |
| 20170630 | Understanding Self-perceived Health in Latin America | Background:Some studies depict the relationships between self-reported health socio-demographic factors and clinical conditions in the general population. The relationship between self-reported health with broader life domains, like the perception of law and order, corruption, civic engagement, and others has been less studied. In Latin America and the Caribbean, notably, there have been very few studies looking into these issues. The Gallup World Poll is a survey conducted periodically in more than 160 countries around the world. In the 2007 and 2008 version, the poll included 130 countries (20 from LAC) and self-reported health using EQ-5D-3L instrument. Clustering is a term used to refer to a setoftechniques that find subgroups in a data set, such that observations within each subgroup are as similar to each other as possible and as different as possible to observations in other subgroups. “Similarity” between observation is determined by the selection of a similarity/dissimilarity measure. The choice of the appropriate measure is made based on the type of data and knowledge of the data being analyzed. After choosing the dissimilarity measure, the clustering algorithm must be selected. For our study, we chose partitioning algorithms which include the K-means clustering algorithm and the Partitioning Around Medoids (PAM) algorithm. In PAM clustering, each cluster is associated with a medoid, the object with the smallest dissimilarity to all other objects in the cluster, and is named after it. Objectives:a) Sociodemographic segmentation: Find subgroups of respondents determined by patterns of sociodemographic variables and assess if belonging to such subgroups predicts a difference in the EQ-VAS score.b) EQ-5D segmentation: Find subgroups determined by response to all items of EuroQol combined with age, education and income.Methods:The Gallup World Poll is a Survey conducted in over 150 countries, with randomly selected, nationally representative adult samples using a set of core questions. Most items havea dichotomous response set and are organized into22indexes.Survey samples are nationally representative of adults over 15 years old. Survey data is weighted to account for sampling, design effects, and margin of error.We eliminated cases not corresponding to one of the following Latin-Americancountries. 1. Argentina2. Belize3. Bolivia4. Brazil 5. Chile6. Colombia7. Costa Rica8. Dominican Republic9. Ecuador10. El Salvador11. Guatemala12. Guyana13. Honduras14. Mexico15. Nicaragua16. Panama17. Paraguay18. Peru19. Trinidad and Tobago20. Uruguay21. VenezuelaWe chose to work with the R statistical package and to limit the amount of computing power necessary for clustering algorithms, we chose to work with data for the year 2008. We created two datasets, one for each previously specified objective. For sociodemographic segmentation, we used the22indexes that summarize information from different domains, and we created a dissimilarity matrix using Euclidean distance, given that all variables were numeric. For EQ-5D segmentation we used the following variables:• Household Income per capita (International Dollars) • Age• Own Health Today –Visual analog scale coded as a continuous variable with a range from 0 to 10. • Mobility• Self-Care• Usual activities• Pain/Discomfort• Anxiety/Depression• EducationSince the data included numeric and categorical variables, we generated a dissimilarity matrix using Gower distance.We later implemented a PAM algorithm, accounting for weighted observations for both objectives. We used weightedaverage Silhouette to determine the best way to cluster the data. This process was applied to both distance matrices. In both cases, a range of 2 to 10 clusters was explored. Once every observation was assigned to a cluster through the described methods,we assessed whether belonging to a specific cluster predicted a change in EQ-5D-VAS score through linear regression. We included the EQ-5D-VAS as an outcome variable, cluster as a categorical variable and age and education as covariables.Results:After selecting the variables to be analyzed and restricting the observations to those recorded in 2008, both datasets had 18,609 observations from 19 (Belize and Guyana were not included in 2008).For sociodemographic segmentation, average Silhouette was highestfor two clusters. Clustering produced clusters 7365and 18131. Cluster 18131concentrated 32,07% of observations and had better(statistically significant) values in all indicators included in the analysis. These clusters were significantly associated with a difference in the value of self-rated health on EuroQol. Belonging to cluster 18131was associated with an average increaseof 0.8994points in the EQ-VAS 0-10 scale, holdingsex,education and age constant, compared to belonging to cluster 7365.Using the criteria of the highest average Silhouette, we selected 8clusters as the best way to group the data for the EQ-5D-Based segmentation. Four clusters were predominantly male and four were predominantly female respondents. Clusters 15706 and 2016 gathered most of the respondents with no problems in any of the five domains and had the higher VAS score in males and females, respectively.We found a group of predominantly males with high EQ-VAS score that reported moderate anxiety depression.Discussion:In our study we explored different segmentation tools in a large Data set that includes data of self-reported health and other aspects from 19 LAC countries. These tools are increasingly used in healthcare to tailor clinical and public health interventions to heterogeneous populations In our first analysis, we showed thataclustering algorithm was able to identify a subgroup of observations defined by favorable values in the Index variables, andthatthese observations also correlated with higher values in the EQ-VAS. In our second analysis, we identifiedinteresting patterns defined by the five domains and VAS score of the EQ-5Daccording to sex. Our findings show that clustering analyses arenot only useful but are also versatile techniquesthat can be applied to the study of health-related quality of life and help to untangle the differences that lie within different cultural and social subgroups. | victor zarate | Populations and Health Systems | 89890 | Completed | 2018 | |
| 2016110 | EQ-5D-5L valuation in Poland: a methodological extension | Objective Cost-utility analysis gain importance also in Central and Eastern Europe (CEE). We aimed to develop Polish utility tariff for EQ-5D-5L health states.Methods Face-to-face, computer-assisted interviews were collected in the representative sample. Each respondent followed a standardizedprotocol to collect 10composite time trade off (cTTO) and 7discrete choice experiment (DCE) observations. In the Bayesian approach, several model specifications were compared based on model fit, the usabilityof the final value set, and how they reflect the elicitation procedure (e.g. censoring). A hybrid approach (using cTTO and DCE data) was employedin the final set, which wascomparedwith the existing ones: EQ-5D-3L and EQ-5D-5L cross-walk.ResultsData from 1252 respondents (11,480 cTTO valuations and 8764 DCE pairs) were collectedin June-October, 2016. The final model accounted for random parameters, error scaling with fattails, censoring at -1, unwillingness to trade in TTO by the religious, and Cauchy distribution in DCE. Pain/discomfort impacts the utility most: disutility equal to 0.575 when at level 5. In the value set, 4.4% of EQ-5D-5L states are worse than dead. Thenew value set has a comparable range (minimum at -0.590 compared to -0.523) and same ordering of the first three dimensions (pain/discomfort, mobility, self-care) as EQ-5D-3L and EQ-5D-5L cross-walk value sets. Moreover,it is more sensitive to mild health worsening.Conclusions The new value set guarantees consistency with past decisions in cost-utility studies,while offering betterassessment of even mild health gains. It can be an option for CEE countries lacking own value sets. | Dominik Golicki | Valuation | 29850 | Completed | 2015 | |
| 2012010 | The EQ-5D-5L Valuation Study in China | Background: In order to estimate a country-specific EQ-5D-5L value set, time trade-off (TTO) values of a subset of EQ-5D-5L health states were recently elicited from a general population sample (N=1250) in China using the EuroQol Group’s EQ-VT system. The purpose of this study was to evaluate the ability of various linear regression models to predict disutility (or utility) values of EQ-5D-5L health states.Methods: Characteristics of EQ-5D-5L health states were modelled to predict disutility values. Model specifications tested included main effects of different levels and types of EQ-5D-5L health problems, main effects with selected first-order interaction terms, and extended N3 and D1 models. All models were also tested with addition of one of two alternative terms, M1 (1, if slight problems in only 1 dimension and no problems in the remaining dimensions; 0, otherwise) and M2 (1, if slight problems in 1 or 2 dimensions and no problems in the remaining dimensions; 0, otherwise). Each model was estimated with 70% of the study sample and assessed for goodness of fit and prediction bias with the remaining 30% of the sample. Model prediction bias was visually examined by plotting the predicted and actual values for observed health states. Results: For all model specifications tested, the random-effects model was more efficient than the fixed-effects model (p>0.05 for all, Hausman test). The M1 and M2 terms were statistically significant in almost all models. However, the estimated effect of ‘slightly anxious/depressed’ turned negative in most models when the M1 term was added. All criteria considered, the model contained all main effects, the M2 term, and a fixed constant (defined as ‘M2 model’) or a varying constant as specified by the D1 term (defined as ‘D1-M2 model’) was most suitable for estimating the EQ-5D-5L TTO values in China. The two variants of the M2 model exhibited identical fit of the 30% of the sample which was not used for model estimation, with the mean absolute error being 0.0573 and the number of absolute errors >0.05 and >0.10 being 41 and 15, respectively. Conclusions: This study provides the algorithm for estimation of the EQ-5D-5L value set in China. The significance of the M terms suggests that Chinese rate the mildest EQ-5D-5L health states differently in the TTO exercise. Future studies should investigate whether this is the case in other populations and explore the reasons for this valuation behaviour. | Gordon Liu | Valuation | 61875 | Completed | 2012 | |
| 2015370 | EQ-5D: the ABC approach to measuring and valuing health in Latin America (W15 workshop: 5th ISPOR Latin America meeting/Chile 2015 | EQ-5D is currently being used to measure outcomes in a wide range of applications –in the measurement of population health in national/regional surveys, in calculating QALYs for economic appraisals, in the assessment of patient reported outcomes and as a performance indicator in benchmarking health providers.The EQ-5D-3L descriptive system comprises 5 generic dimensions of health: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each dimension has 3 levels: no problems, some problems, extreme problems. A respondent is asked to indicate her health state by ticking in the box against the most appropriate statement in each of the 5 dimensions. This classification defines a total of 243 unique health profiles, which can be later transformed into an index by attaching social preferences of a particular relevant population, which enables statistical comparisons between different intervention groups. Given the lack of social values for EQ-5D in many LA countries, a series of methods have been proposed to indirectly derive such valuations. Those alternatives represent only short-term solutions and should be avoided when local valuation data is available. Scientific evidence supports the fact that health valuations tend to vary from country to country and also within a society whenits level of cultural heterogeneity is high. Decision makers in LA should always try to collect direct valuation data when economic evaluation methods are being considered as part of the planning and regulation of health care. | victor zarate | Education and Outreach | 22900 | Completed | 2015 | 2015 |
| 2012050 | Extension EQ-5D-5L study England for other UK countries | Earlier this year, our research team was awarded funding from the National Institute of Health Research (NIHR) Policy Research Programme (PRP), supported by the Department of Health, to undertake an EQ-5D-5L value set for Englandstudy. The research is being undertaken as a collaboration between the Office of Health Economics and Sheffield University. Data collection is currently underway, with sampling and face to face interviews being undertaken throughout England by the social survey company Ipsos MORI. As the research funding is provided under the auspices of England’s Department of Health, we were advised by the Department of Health that the relevant definition of the ‘general public’, from whom to collect data, should be restricted to ‘the general public of England’ only –not the wider UK –and that funding could not be provided for the collection of any data outside England. This issue of whether this study should be focused just on England, or on the UK, had for some time been the subject of extensive discussion with the Department of Health –in the two years prior to submitting our proposal, this issue had been discussed in a number of key meetings between the EuroQol Group and the Department of Health. We had also consulted with colleagues in NICE (Carole Longson and Bhash Naidoo) and the Scottish Medicines Consortium (SMC) (Andrew Walker) on this issue.The 5L value set for England which we will produce for England as an outcome of our current work will be used by the Department of Health in England-specific applications -for example, in the analysis of data from the English NHS PROMs programme, and fromthe Health Survey for England. However, other decision making bodies that are very important users of the EQ-5D are responsible for slightly different populations. For example, NICE’s remit covers both England and Wales. The SMC makes decisions regarding health care technologies in Scotland. Both NICE and the SMC currently use the Dolan (1997) value set for the UK. Importantly, the system of value based pricing for new medicines, to be introduced in 2014, will be UK-wide -not just for England. As estimates of QALY gains (and therefore EQ-5D-5L data) will be central to VBP, a UK value set for EQ-5D-5L would ensure health states are valued in a manner fitting with the populations affected by VBP decisions.We are concerned that by restricting the value set to England, and failing to capitalise on the current opportunity to extend data collection efforts to Wales, Scotland and Northern Ireland, that this could potentially:(a)compromise the acceptability and perceived relevance of the new value set to key users such as NICE and in future decisions regarding VBP; and(b)adversely affect the use of the EQ-5D-5L in the UK.Because of these concerns, we sought advice from the England Department of Health on how to approach the Departments of Health in each of the ‘devolved governments’ of Scotland, Northern Ireland and Wales. Since funding for the EQ-5D-5L value set for Englandstudy was confirmed in May this year, we have been vigorously pursuing contacts in each of those countries, via email and teleconferences, to explain the study and to explore their willingness to provide funding to support data collection in each country.Initially, there was strong interest in principle from all three countries. The Office of the Chief Scientist in Scotland was subsequently confirmed the availability of funds to support the collection of additional data from the Scottish general public. Unfortunately, and despite the efforts of the people we were in contact with in Northern Ireland and Wales (which included the Chief Medical Officers and Chief Pharmacists in each case), they were unable to secure the (relatively modest) budgets required in each country to facilitate data collection.Having now exhausted all other avenues for seeking external funding for data collection in Wales and NI, we therefore ask the EuroQol Group to consider providing funding for that. Details of the aims and budget request are provided below. | Nancy Devlin | Valuation | 51226 | Completed | 2019 | 2020 |
| 2013020 | A Korean valuation study for the EQ-5D-5L | Background The EuroQol Group recently developed a new questionnaire-the EQ-5D-5L-which has 5 levels per dimension. However, the social values for EQ-5D-5L health states have depended on each country. This study aimed to estimate Korean preference weights for EQ-5D-5L based on values elicited from Korean population applying the EuroQoL Valuation Technology (EQ-VT) program and the standard protocol by the EuroQol group. Methods Of 1,085 general populations were recruited using multi-stage quota sampling method in Korea. Each respondent valued 10 health states using the composite time trade-off (cTTO) and 7 health states using discrete choice experiment (DCE). The EQ-VT program was developed by the EuroQol group and translated into Korean with the Korean research team. Computer-assisted, face-to-face interviews were conducted. A range of predictive models were explored using cTTO and DCE data, respectively. The most appropriate model was determined after assessing goodness of fit, logical consistency, and parsimony. Results Model with dummy variables for each level of severity and dimension and the term that picked up whether any dimension in the state was at 4th or 5th level was selected as the best predictive model. Only with cTTO data, the final model has all coefficients that were statistically significant and logically consistent. In addition, it was parsimonious. This model had a mean absolute error of 0.027 and none out of 86 exceeded 0.1 of absolute error. Conclusions The final model in this paper appeared to predict the utilities of the states, which was valuated directly. This model could be used interpolate quality weights of all EQ-5D-5L health states. | Min-Joo Woo | Valuation | 34500 | Completed | 2013 | 2016 |
| 2016530 | Application study of the EQ-5D-5L in oncology: linking self-reported quality of life of patients with metastatic colorectal cancer to clinical data of a German tumor registry | OBJECTIVES Approximately one out of eight cancers in Germany affects the bowel and more than 6% of the population are diagnosed with colorectal carcinoma during their lifetime. The EuroQoL EQ-5D ques-tionnaire is widely used in oncology to generate quality of life (QoL) weights and corresponding health states. Aim of this study is to generate EQ-5D utilities by linking clinical data of a German colorectal cancer registry to self-reported QoL measures from the EQ-5D-5L to explore the relation-ship between disease-specific health states and health-related QoL (hrQoL). METHODSThe study sample included metastatic colorectal cancer patients currently recruited in the German Tumor Registry Colorectal Cancer. The EQ-5D-5L was administered once as paper version to pa-tients who were at the start or at later stages of treatment. Potentially relevant comorbidities, disease-specific health states (e.g. metastases) and symptoms (e.g. nausea), and treatment status weredefined by literature review and medical experts. Data was drawn from the clinical registry and the EORTC QLQ-C30 questionnaire. Multivariate regression models will be calculated to explore the health state specific and comorbidity dependent decrements on QoL. RESULTSIn total, n=758 questionnaires were sent to patients, n=535 were returned, and n=503 were finally included in the data analysis. Mean age was 66.76 years and 62.23% were male. 70.68% of patientshad at least one comorbidity and the most frequent comorbidity was hypertension (42.37%). The overall mean hrQoL based on EQ-5D-5L for patients with metastatic colorectal cancer was 62.12with the Visual Analog Scale (VAS).CONCLUSIONSThis pilot study linking clinical registry data to hrQoL data shows a new opportunity for a cross-sectional study design. The implementation of EQ-5D-5L in metastatic colorectal cancer patients showed reduced hrQoL compared to the general population (mean VAS 85.15). Results from the regression analyses will be presented. | Wolfgang Greiner | Populations and Health Systems | 51575 | Completed | 2016 | |
| 20190050 | panel presentation titled ”Putting Patients at the Centre of Health Care: The use of patient-reported outcome measures (PROMs) in the Healthcare System” for CAHSPR annual conference | The presentation has been held | Fatima Al Sayah | Populations and Health Systems, Education and Outreach | 4211 | Completed | 2019 | |
| 20180430 | EuroQol Annual meeting of Asian region: sharing and networking between EQ-5D researchers of Asian countries. | To summarize,this EuroQol Asian Academy Meetingfunded by EuroQol Groupcould be seen a promotion of the EuroQol Group as keyplayer inthe development of HRQOL and HTA studies in the Asian region. We planned the secondmeetingin 2020 that help the EQ-5D researchersin Asia to share their results and foster collaborations. | Fredrick Purba | Education and Outreach | 48825 | Completed | 2019 | 2019 |
| 20170660 | Extending the QALY. Stage 3: Testing face and content validity with patients, social-care users and carers in Argentin | The Extending the QALY project, a collaborative project between the EuroQol group, Sheffield University, NICE, University of Kent and the Office of Health Economics, is a two and half year project which aims to develop a broad generic measure of quality of life that is valued on the zero to one scale necessary to calculate Quality Adjusted Life Years (QALYs) for use in economic evaluation. Three key distinctions between existing generic health and wellbeing measures and this new instrument are: the need to be applicable across a number of sectors (health, socialcare, carers, and public health); the explicit role of broader wellbeing aspects within the instrument; and its intended use in economic evaluation.The project contains six stages. Stage1 of the project established the domains for the quality of life instrument drawing on a number of strands of qualitative and quantitativ ework. Stage 2 generated a list of potential items covering the agreed domains from Stage1. The aim of the Stage3 was to test the face validity of candidate items using semi‐structured face‐to‐face interviews. Stage 3 was replicated in different countries (England, Germany, China and Argentina) to explore translatability of both languages of and concepts. The findings from Stages 1 to 3 will contribute to a proposed instrument which will be tested and valued during stages 4 to 6.This reports show the findings of the face validity stage carried out in Argentina. | Federico Augustovski | Descriptive Systems, EQ-HWB | 15000 | Completed | 2018 | 2018 |
| 139-RA | Preference heterogeneity in health valuation: Dutch BWS data | Background Respondents in a health valuation study may have different sources of error (i.e., heteroskedasticity), tastes (differences in the relative effects of each attribute level), and scales (differences in the absolute effects of all attributes). Although prior studies have compared values by preference-elicitation tasks (e.g., paired comparison [PC] and best-worst scaling case 2 [BWS]), no study has yet controlled for heteroskedasticity and heterogeneity (taste and scale) simultaneously in health valuation. Methods Preferences on EQ-5D-5L profiles were elicited from a random sample of 380 adults from the general population of the Netherlands, using 24 PC and 25 BWS case 2 tasks. To control for heteroskedasticity and heterogeneity (taste and scale) simultaneously, we estimated Dutch EQ-5D-5L values using conditional, heteroskedastic, and scale-adjusted latent class (SALC) logit models by maximum likelihood. Results After controlling for heteroskedasticity, the PC and BWS values were highly correlated (Pearson's correlation: 0.9167, CI: 0.9109-0.9222) and largely agreed (Lin's concordance: 0.7658, CI: 0.7542-0.7769) on a pits scale. In terms of preference heterogeneity, some respondents (mostly young men) failed to account for any of the EQ-5D-5L attributes (i.e., garbage class), and others had a lower scale (59%; p-value: 0.123). Overall, the SALC model produced a consistent Dutch EQ-5D-5L value set on a pits scale, like the original study (Pearson's correlation:0.7295; Lin's concordance: 0.6904). Conclusions This paper shows the merits of simultaneously controlling for heteroskedasticity and heterogeneity in health valuation. In this case, the SALC model dispensed with a garbage class automatically and adjusted the scale for those who failed the PC dominant task. Future analysis may include more behavioral variables to better control heteroskedasticity and heterogeneity in health valuation. | Suzana Karim | Valuation | 20100 | Completed | 2020 | |
| 20180270 | 2nd EQ-5D training workshop for China | A half-day EQ-5D training workshop on 26 October 2018 in Fuzhou, China as the pre-conference short course of the 6th South China Pharmacoeconomics Forum. | Nan Luo | Education and Outreach | 9400 | Completed | 2018 | 2018 |
| 20180060 | Testing the face and content validity of E‐QALY domains and items: a study of the Chinese population | This project aims to test the face and content validity of the items generated in stage 2 of the E‐QALY project in a groups of Chinese respondents from Shanghai, China. The project will use the standard study protocol developed by the E‐QALY team. It is part of the international study of the E‐QALY instrument approved by the EuroQol Group. | Nan Luo | Descriptive Systems, EQ-HWB | 15000 | Completed | 2018 | 2018 |
| 20170650 | Comparison of the performance of an integrated Interviewer Administered EQ-5D-5L version with the Face to Face and Telephone Interviewer administered versions | Aim: There are currently two interviewer-administered EQ-5D versions, the Face to Face (FF) and the Telephone (T) versions, which use slightly different phrasing throughout. The VMC has developed an integrated Interviewer Administered (IA) version to: 1) reduce unnecessary translation and maintenance costs and 2) to clarify the instructions for interviewers and respondents. This study aimed to establish if the IA was comparable to the FF and T. Methods:A repeated measures descriptive design was employed.Each of ten interviewers interviewed a convenience sample of 16 adults over 18 years who spoke English well and had access to a telephone. At least 25% were to have diagnosed health conditions. Each respondent answered the IA and one of the other versions, in a randomly determined order, using the same interview mode for each (i.e. face-to-face or telephone), one day apart. A structured interview was held to establish the interviewer’s opinion of the three versions.Data analysis:Weighted Kappa (Kw) was used to determine the intra-rater agreement of the level scores in the EQ-5D dimensions. The agreement between self-rated VAS score and the index score, calculated using the English value set 2, was examined using the ICC for absolute agreement. The effect size (ES) was calculated and Bland Altman plots were plotted to detect any systematic bias between versions.Results:Mean respondent age was 39 (SD=16.5), 60% were female, and 56% reported a health condition. As per protocol, 160 answered the IA version and 83 and 77 also answered the FF and T versions respectively.Mean VAS score was 78.7 (SD=15.9) for the IA and 76.9 (SD=17.1) for FF/T combined, mean difference 1.9 (95% CI= 0.1 to 3.6). Mean index score was 0.89 (SD.13) for the IA and 0.88 (SD=.13) for FF/T combined, mean difference 0.007 (95%CIs =-0.005 to 0.018). Intra-rater agreement for level scores ranged from moderate to good (Kw 0.54 for UA to 0.71 for SC). The ICC for VAS scores for single measures was0.77 (CIs=0.69-0.82) and 0.87 (0.82-0.90) for average measures. For the index scores the ICC was 0.83 (CIs=0.78-0.88) for single and 0.91 (CIs0.88 -0.94) for average measures. ES was small for both VAS (-0.12, CIs=-0.23--0.00) and index scores (-0.05, CIs=-0.15-0.03). Bland Altman plots indicated no systematic bias, and limits of agreement (LoA) were -20.1-24.0 for VAS and -0.13-0.15 for index scores. Nine of the ten interviewers preferred the IA for both face-to-face and telephonic interviews.Discussion: The results show acceptable levels of Kw, ICC, and a small effect size. The mean differences were also small. It is concluded that the new IA questionnaire may thus be used interchangeably with the existing FF and T versions and, in future, should supersede these versions. However, as the LoA, particularly for VAS, were larger than desired, possibly due to the time period between administrations, different versions should not be administered at the level of an individual.Acknowledgement: Support in kind from the Office –particularly, Nalinie Banarsi, Bianca Smit and Thomas Renkers | Jennifer Jelsma | Descriptive Systems | 14956 | Completed | 2017 | 2018 |
| 20180010 | Extending the QALY - Testing face and content validity with patients, social-care users and carers in Germany | In total, we interviewed 30 respondents, the detailed demographic information was provided below in Table 1. We used convenient sampling method and did not set quota for the sample in terms of the gender, age, education and ethnicity. In overall, the sample was young and with high level of education. There were 5 respondents from interviewer 1 that did not fill in the self-reported questionnaire, which caused some missing information. The only variable we set quota on the sample was the category of the respondents (carers, physical patients, mental patients). Please note that in the self-completed questionnaire, we used ‘whether you have long-standing conditions’ to find out whether the respondent have physical or mental problems, but some respondents did not think their problems are ‘long-standing’ and therefore did not indicate their condition in the questionnaire. In this case, the interviewers probed that condition that the respondent was having and put down in the interview transcript. We recruited 2 postgraduate students and 1 recently graduated master student as interviewers from School of Public Health, Fudan University, Shanghai. The two interviewers had qualitative interview experience and all three interviewers were trained and briefed by the investigators before formal data collection. Interviews were conducted between 26th July and 17th August 2018. All respondents were recruited from two hospitals in Shanghai, No.10 Hospital of Shanghai and Zhongshan Hospital of Fudan University. Most respondents were recruited from the outpatient services, some were recruited from inpatient services. Interviewers approached the respondents and explained the purpose of this study and the takes they will be expected to do. Once the respondents consented, the interviewers took the respondents to a quiet place (e.g. meeting room, doctor’s office) and conducted the interview. All interviews were conducted following the International interview protocol of the E-QALY study. We did adjust the question of asking education attainment in the self-completed questionnaire according to the Chinese education system. | Wolfgang Greiner | Descriptive Systems, EQ-HWB | 9213 | Completed | 2018 | 2018 |
| 20170510 | Valuation of the EQ-5D-5L in the French population | According to the World Health Organization (WHO), quality of life is defined as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment.Quality of life measures are obtained from responses provided by subjects to standardized questionnaires. Today there are multiple scales of quality of life related to health: they are considered to be specific if they explore quality of life related to a particular disease, orgeneric if they are common toany condition. Among the existing generic tools, theEuroQolEQ-5Dquestionnaire istoday the most widely used descriptive system of health statesto capture health related quality of life in the world(1,3). Each health state generated by the questionnaire is associated to a so-called “tariff” (or utility value), which reflects its relative value ranging from -1 to 1. These values are then used to assess the outcomes of health products, servicesor programs in cost-effectiveness analyses. Associated to a time spent in a given health state, they yield a number of Quality AdjustedLife Years (QALYs), which are literally the number of life years provided by a given intervention weighted by the quality of life experienced by the beneficiary of the treatment. The EQ-5D questionnaireis adescriptive system of health statesbased on five dimensions, which are considered as being essential: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each dimensionis reported with three levels of severity (EQ-5D-3L) and more recently with five (EQ-5D-5L). In the 3level questionnaire, respondents can score each dimension on three levels, thus leading to 243health states(plus death, scored 0 by convention). For each health sate a value from -1 (theoretically considered asthe worst possible health state)to 1 (perfect health) is associated, the estimation of which is based on surveys of stated preferences in a representative sample of the population of each country. In France, the valuation of EQ-5D-3L health states was undertaken by the Chair of Health Systems at ESSEC Business School and the French value set is recommendedby the French High Health Authority(HAS)for the submission of cost-effectiveness studies when required by regulation for access to coverage and pricing. (4).The 3 level version of EQ-5D has been considered by many researchers as limited in capturing small differences in health levels for certain conditions. This lack of sensitivity has been the main motivation for the EUROQOL consortium to develop the 5 level version of the EuroQol questionnaire, the EQ-5D-5L. Throughout the development of the 5L, the five dimension of the original EQ-5D-3L are maintained but the number of levels for each dimension was increased to 5 (5). This new version of the questionnaire leads to a total of 3125 health states (55) compared with only 243 from the 3-level previous version. Because of its better accuracy to describe the health values related to a given health state, EQ-5D-5L will now become the reference in the coming years. Indeed, several publications have demonstrated an increased sensitivity of this new version to capture variations in health related quality of life of patients (6-15). | Gerard De Pouvourville | Valuation | 25000 | Completed | 2017 | |
| 2015320 | A fuzzy approach to time trade-off experiment in EQ-5D-3L valuation | AbstractUtilities of health states are often estimated to support public de-cisions in healthcare. People’s preferences may be imprecise, for lack of ac-tual trade-off experience. We show how to elicit the utilities accounting forimprecision (represented as fuzzy sets), discover the main drivers of impreci-sion, and compare several approaches to modelling health state utility datain the fuzzy setting. We extended the time trade-o↵(TTO) questionnaire, toelicit utilities of states defined in EQ-5D-3L descriptive system (health de-scribed by five dimensions) in 184 respondents. Our study demonstrates thatrespondents are capable of assessing own imprecision and a rigorous mathe-matical modelling is possible. The imprecision is larger than as inferred fromthe standard TTO method and is larger than estimation error, even in oursmallish sample. The analysis shows that non-trading behaviour in TTO oftenresults from imprecision, rather than lexicographic preferences for longevityover quality. People are especially imprecise in assessing the impact of usualactivities (one of dimensions) on utility; also, the internal inconsistency of ahealth state increases the imprecision. Fuzzy least squares seems best suitedto assign disutilities to individual dimensions, while separately modelling the location of preferences and amount of imprecision seems best to extrapolateimprecision for out-of-sample health states (to produce value sets). Accountingfor imprecision changes the results little, if crisp parameters are estimated. | Michał Jakubczyk | Valuation | 27500 | Completed | 2016 | |
| 20180330 | Is there a need for bolt-on itching and fatigue beyond pain and discomfort? Empirical evidence to demonstrate whether specific symptoms are contained within the broader pain/discomfort dimension and development of a standard approach to reject/confirm a b | Abstract of researchStudy aims:This study aims to investigate whether twospecific aspects of ‘discomfort’which are relevant to the patient groupinvestigated (itching, fatigue)are contained within/covered bythe broader EQ5D-5L pain/discomfort dimension. Secondly, wewilldevelop a standard approach to reject/confirm a bolt-in status.Data source:Pain, itching and fatigue are threecommonly reported symptoms among burn patients. Our research group may useexisting data from a large clinical survey in a nation-wide cohort of burn patients(self-assessment).The survey containsthe EQ-5D-5L and many additionaldescriptive items, including painand itchingon a VASof 1 (no pain/itch) to 10 (extreme pain/itch)andfatigue. Methods:First, we will assess to what extent variability in pain, itching and fatigue are captured by the EQ pain/discomfort dimension. Thenwe assess whatis, in a descriptive sense, the quantitative overlap (separately) of pain, itching and/or fatigue scores with the EQ-5D pain/discomfort dimension(regression methods).Subsequently,we determinethediscriminatory power of the EQ-5D-5L with and without the more specific pain and/or itching and/or fatigue items (recoded into five categories). Then, the redundancies with existing EQ-5D dimensions, notably pain/discomfort,will bedemonstrated using multiple methods, including dominance/dependence tables.Next, we explain variance in outcome(EQ-VAS), measured in severe burn patients by the EQ-5D5Lalone, to which pain, itching and fatigue data are added.Lastly,we will investigate towhat extent the addition of itching, pain and/or fatigue items (applying a plausible set of hypothetical valuation functions)influence rank orderings within burn severity groups. | Juanita Haagsma | Descriptive Systems | 62073 | Completed | 2019 | 2020 |
| 2015300 | QALY-balanced DCE designs for health state evaluations | Background:Discrete choice experiments(DCE) are increasingly used for health state valuation. However, the valuesderived from initial DCE studies varied widely. We hypothesize that these findings indicate presence of unknown sources of bias that must be recognized and minimized. Against this background, we studied whether values derived from a DCE are sensitive to how well the design spansthe QALY range. Methods:We constructed an experiment involving three variants of DCE tasks for health state valuation: standard DCE, DCE-death, and DCE-duration. For each type of DCE, an experimental design was generated under two different conditions, enabling a comparison of health state values derived from standard Bayesian efficient DCE designs with values derived from ‘QALY balanced’ designs that control for coverage of the severity range in health state selection. About 3,000 respondents participated in the study and were randomly assigned toone of the 6 study arms. Results:Imposing the QALY-balance restriction hada large effect on health states sampled for the DCE-durationapproach. The standard efficient design returned a skewed distribution of selected health statesand this introduced bias. The choice probability of bad health states was underestimated, and time tradeoffs to avoid bad states were overestimated, resulting in too low values.Imposing the same restriction had limited effect in the DCE-death approach and standard DCE. Conclusion:Variation in DCE derived values can be partially explained by differences in how well selected health statesspanned the severity range. Imposing ‘QALY balance’ on DCE duration designs is a validity requirement. | Mark Oppe | Valuation | 49250 | Completed | 2015 | |
| 20190070 | Making both ends neat: exploring the effects of modifying the TTO on non trading and all in trading | The corner answers in time trade-off, TTO, non-trading, NT; and assigning utility of -1 —all-in-trading, AIT) occur frequently and impact the resulting modelsand value sets. NT resultsin poor discriminatory power for mild states. AIT means the average utility estimates are biased upwards(censoring may help but requires parametric assumptions).We aim to test if modifying the TTO protocol lowersthe frequency of NT/AIT (if yes, it would shed light on the reasons behind). Specifically, we hypothesise that NT may stem froma coarse-grained list of answers in TTO(half-a-year intervals) or psychological biases(e.g., reluctance to give up years because of the loss aversion as in Prospect Theory). AIT may result fromutilityfor severe statesbeing discontinuous at 0 (i.e.,the sole fact of having to endure 55555, for whatever short 𝑇, reduces the utility),analogously to present bias or certainty effectobserved in behavioural economics.We will use four arms in online TTO data collection: a control arm (resemblingcTTO) and three experimental arms (ca. 200 respondents in each arm). In the experimental arms,we will ask respondents if finer granularity would get them to trade or add years in full health to a diseased state or use diseased state in both compared profiles in the worse-than-dead part. We will compare the proportion of NT/AIT answers in groups of mild/severe states between the arms and also see if modifications improve the association(counterintuitive in the current protocol)between state severity and utilityin worse-than-dead part. | Michał Jakubczyk | Valuation | 83200 | Completed | 2019 | |
| 20170670 | Extending the QALY project – testing the face and content validity of candidate items within the Australian context | Summary of issues from face validity interviews•Most items were perceived positively •Problematic items that we considered for removal included: oQ6 (I could do the things I wanted to do) and Q8 (I was able to do what I needed) because of difficult wordingoQ19 (I was able to communicate with others with no difficulty) was removed because of misunderstanding of the word communication. oQ20 (Because of hearing and/or speech, how difficult did you find it to have a conversation?) was removed as people could have difficulties with having a conversation for other reasons. oQ22 and Q24 removed because the layout of Q21 and 23 was preferred (same content)•Potential amendments that we suggest for some items:oQ9: Change layout to difficulty across the top & refer to day-to-day rather than daily oQ16: Change layout to difficulty across the top and clarify the incorporation of health care aids (“I was able to get around inside my house with no difficulty (using any aids or equipment you need e.g., a wheelchair, frame or stick)”) oQ17: Change layout to difficulty across the top, clarify the incorporation of health care aids, clarify radius of distance, and add my house (“I was able to get around outside my houseto go shopping etc. with no difficulty (using any aids or equipment you need e.g., a wheelchair, frame or stick)”) oQ18: Change “How well did you communicate with others” to “How well did you interact with others (e.g., having a conversation)” •Response options: For Q10 and Q11 the frequency item scale was generally preferred•The recall time was generally acceptable, except for hearing and vision, where some participants felt that the recall time was irrelevant. | Brendan Mulhern | Descriptive Systems, EQ-HWB | 14963 | Completed | 2018 | 2018 |
| 2016340 | Uses and applications of EQ-5D in Latin America & the Caribbean - Systematic Review and bibliometric study | not available | Lucila Rey Ares | Education and Outreach | 14992 | Completed | 2016 | |
| 123-RA | Decomposing the socioeconomic gradient in health-related quality of life over the life course (DeQoL-LIFE) | Reducing socioeconomic inequalities in health is a common social objective for policymakers. Differences between socioeconomic groups exist in terms of both health-related quality of life (HRQoL) and survival. These can result in large lifetime health inequalities. However, there is a lack of evidence on how inequalities accumulate over the life course and which dimensions of HRQoL contribute most to overall health inequality. This project will analyse how socioeconomic inequalities in HRQoL change with age and how these are determined by the different dimensions of the EQ-5D-3L. Our empirical analysis will yield population-level HRQoL scores for different socioeconomic groups, which can be combined with national life tables to produce estimates of quality-adjusted life expectancy (QALE), a rich summary measure of lifetime health. We will analyse how much of the inequalities in QALEs can be attributed to each EQ-5D dimension. We will use HRQoL data from a long-running, nationally representative survey of the English population, the Health Survey for England, which has intermittently collected EQ-5D-3L data since 2003. We will use all waves that included the EQ-5D-3L to show how inequalities in both HRQoL and QALE have developed over the last 15 years. This project will demonstrate the usefulness of the EQ-5D instrument in measuring and explaining health inequalities over the life course, focussing specifically on the additional insights that can be gained from analysing the detailed EQ-5D health profile data. The results will also provide useful evidence to policymakers seeking to reduce health inequalities in England and internationally. | Nils Gutacker | Populations and Health Systems | 71960 | Completed | 2020 | |
| 2015100 | The distribution of the EQ-5D-5L Index in patient populations | Background:EQ-5D data are often summarised by anEQ-5D index, whosedistribution foritsoriginal version, the EQ-5D-3L,often shows in patient populations two distinct groups, arising fromboth the distribution of ill health and how the index is constructed (Parkin et al., 2016). Todate, there is little evidence about the distribution of the EQ-5D-5L index.Aims:The aimsof this study are:to explore whether or not the EQ-5D-5L index distribution also demonstrates clustering; to test the extent to which clustering of EQ-5D-5L profile data drivesany observed clustering of the EQ-5D-5L index,and the extent to which clusters result fromthe value sets used to create the index; and to discussthe implications of our results for statistical analysis of EQ-5D-5L index data.Data:Data from Cambridgeshire Community Services NHS’s electronic patient records data warehousewere analysed.EQ-5D-5L profiles before treatmentwere obtained for30,284 patients across three patient groups: community rehabilitation services (N=6,919); musculoskeletal therapy services (N=19,999); and nursing services (N=3,366).Methods:The EQ-5D-5L indexis calculated using both a ‘mapped’ (crosswalk) value set (MVS) and the English value set (EVS).We examinedthe distribution of 1,730 of the 3,125 profiles described by the EQ-5D-5L to check forclustering of the EQ-5D-5L index. The k-meanscluster method and the Calinski–Harabaszpseudo-F indexstopping rule were used to search for the clusters in the index. We examined the impact on the results of using different initial values in the clustering analysis. Results:Clustering within the EQ-5D-5L index distribution is suggested by both clustering methods, forthe three patient groupsand all patients together.For the all patients’data, we foundtwo robust clusters for the MVS-based index, compared to three robust clusters for the EVS-based index. The EQ-5D-5L profile dataalonedonotobviously drive the index clusters.Conclusion:The results highlight the importance of undertakingcareful exploratory data analysisfor health related quality of life measures such as the EQ-5D,to ensure that statistical testingtakesaccount ofclusteringand other features of the data distribution.Key words:EQ-5D; EQ-5D-5L Index; EQ-5D-5L profile; EQ-5D-5L value sets; Clustering Analysis; Patient Reported Outcomes (PROs); NHS PROMs. | Nancy Devlin | Valuation | 9750 | Completed | 2015 | |
| 2015360 | Using DCE with duration to value EQ-5D-5L: Simplifying the task completion process | not available | Rosalie Viney | Valuation | 33650 | Completed | 2015 | |
| 2016420 | A Big Step Forwards for Health Policy in Indonesia: The Introduction of The EuroQol EQ-5D-5L Value Set and Other Recent Developments in Quality of Life Research and Cost-Effectiveness Analysis. (PI: Purba) | This year in October the values set of the Indonesia 5 level version of the EQ-5D will be submitted to a scientific journal. We will also have the population norm scores. The arrival of the Indonesia 5 level value set and norm scores comes timely, as Indonesia has started in 2014 a societal health insurance system, and (cost-) effectiveness is determined as one of the leading principles for reimbursement. With this symposium/workshop we want to bring the stakeholders together how can benefit most from the introduction of the Indonesian value set and population norm scores, in order to facilitate the implementation of the EQ-5D-5L in Indonesia. The stakeholders will be the policy makers, physicians and scientists and other end users like representatives of industry. We will educate them about the principles of quality of life research, health economics and the added value of the now state-of-the-art Indonesian EQ-5D for those fields. The symposium is supported with budget and in kind by the Faculty of Psychology Universitas Padjadjaran (UNPAD). Given our network and that of UNPAD, we are able to attract key decision makers and scientific opinion leaders, who can support us in establishing a leading position of the EQ-5D in Indonesia. Given the present need of Indonesia to achieve valid cost-effectiveness and quality of life research, the symposium/workshop will have the effect a promotion of the EQ-5D in this country with 250 million citizens at the right moment. | Frederik Purba | Education and Outreach | 29300 | Completed | 2016 | 2017 |
| 2016380 | Analyzing health inequities using the EQ-5D in the Chilean general population | not available | victor zarate | Populations and Health Systems | 15000 | Completed | 2016 | 2017 |
| 2016020 | EQ DCE: Crowdsourcing innovation in valuation specification | ABSTRACT Background: Health is not bought and sold openly. In order to understand the valueofits attributes, health preference researchers conductsurveys using paired comparisons (“Which do you prefer?”). In the absence of external data with which to validate their findings, resulting models, often based on conventional practices and assumptions,may be suboptimal in terms of predictive validity.Aims: To engage a large group of scientists in order to identify specifications and approaches to model selection that better predict health preferences. Methods: Announced in March 2016, the competition attracted 18 teams from around the world. In April,an exploratory survey was fielded:4074 US respondents completed 20 out of 1560 paired comparisons by choosing between two health descriptions (e.g., longer lifespan vs better health). The paired comparison data were distributed to all teams. By July, eight teams had submitted their predictions for 1600 additional pairs and described their analytical approach. After these predictions had been posted online, a confirmatory study was fielded (4148additional respondents).Results: In September, the victorious team, “Discreetly Charming Econometricians” led by Michał Jakubczyk, was announced at the EuroQol Plenary. This team achieved the smallest chi square 4391.54(a predefined criterion)usingtwo sub-models: one comparinga health descriptionvs immediate death and the other comparing twohealth descriptions.Conclusions: We demonstratedthe diversity of analytical approaches and highlighted the importance of predictive validity in health preference research. Although the generalizability to specific applicationsis unknown, the models that are more predictive, even if difficult to be immediately applied in health technology assessment (e.g. may not yield utilities directly assigned to specific health states), may inspireand informdebate among health preference researchers. | Benjamin Craig | Valuation | 123632 | Completed | 2016 | |
| 2016631 | (Proposal extension) An online DCE study to support the development of an EQ-5D-Y value set for the UK: including an adolescent arm in the study | Introduction: Currently, no value sets exist to support the use of EQ-5D-Y health states in cost-effectiveness analyses. One of the challenges associated with generating these value sets is that standard valuation methods are cognitively demanding and may not be appropriate for younger individuals to complete. However, asking adults to complete a valuation task from the perspective of a child/adolescent presents its own challenges. In this study we collected adolescent and adult responses to a discrete choice experiment (DCE). The aim was to evaluate whether there are systematic differences in preferences between these two groups when they make choices between EQ-5D-Y health states.Methods: An online survey was designed containing a DCE plus background and debrief questions. The DCE comprised 15 pairwise choices between EQ-5D-Y health states. A sample of UK adults was asked to consider the health of a 10-year-old child when completing the tasks. In contrast, a sample of UK adolescents (11-17 years) received the same survey and completed the tasks considering their own health. Mixed logit models with correlated parameters were estimated for both samples based on prior research. To understand whether preferences between the two groups were different,accounting for any scaledifferences,we conducted the Swait-Louviere test. To ensure the comparisons accounted for potential differences in scale between the two samples, we used the relative 2parameter importance of the attribute levels and an examination of differences in predicted choice probabilities. Results: In total, 1,000 adults and 1,005 adolescents completed the survey. The relative importance of the levels attached greatest disutility to level 3 in pain/discomfort (PD3) followed by anxiety/depression (AD3)in both groups. The third-worst level differed: mobility (MO3)for adolescents; and usual activities (UA3)for adults. Modelling results indicate that there are significant differences in preferences between the two samples. The Swait-Louviere test confirmed that model coefficients were different and that such differences cannot be explained entirely by differences in scale.Analysis of predicted probabilities suggest that there were fewer predicted/observed probabilities around 0.5 in the adult sample, suggesting that adolescents were perhaps less confident in their choices. Discussion/Conclusion: Resultsthat adolescents’ preferences differ from those of adults taking the perspective of a child. It may be that these differences exist due to the relative experience of adults, who might have a better understandingof ill health and its effects. However, a normative argument can be made that adolescents’ preferences should be considered in any decision-making that is directly relevant to them. Whilst the cognitive demands of other valuation methods may have ruled this possibility out, this study provides evidence to suggest that adolescents are capable of completing a DCE. | Nancy Devlin | Youth | 14875 | Completed | 2016 | 2016 |
| 20191120 | Population norms and inequalities based on EQ-5D-5L general population surveys (POPS 2 Project) | Populationnorms and inequalities based on EQ-5D-5L general public surveys (POPS 2 Project)One factor associated with the success ofthe EQ-5D instrument has been the ease of constructingcomparable international datasets, partlydue to the existence of user guides and standards of analysis. A book summarizing results from international EQ-5D-3L general population surveys on self-reportedhealth (“Self-Reported Population Health: An International Perspective based on EQ-5D”) continues to be in very high demand and has been downloaded over 50,000 timessince publication in 2014.A new edition of this book is necessary for a number of reasons. First, new population datasets have become available based on the EQ-5D-5L,including countries hitherto not being represented, including countries outside of Europe. These data were usually collected under higher quality control. Second, the selection of indicators (both economic and epidemiological) was elementary, where some amendments weremade due torecent guiding sources. The aim of the current proposal is to produce a new edition of population health data, including norms and inequality indicators based on EQ-5D-5L surveys conducted in representative samples of general populations. Specifically, the following are the key objectives:1)Identify EQ-5D-5L datasets from general population surveys. Create a database archive using standardized structure2)Generate EQ-5D-5L population norms3)Generate inequality indicators, both fromepidemiological and economic origin4)Make cross-country comparison of EQ-5D-5L population dataOutputs of the project will support future research activities of the EuroQol Group’s Health Inequalities Special Interest Group, such as future in-depth analyses of health inequalities using the dataset archive.The project would also have implications for other working Groups, such as the Valuation and the Education & Outreach Working Groups. | Agota Szende | Populations and Health Systems | 15000 | Completed | 2020 | |
| 2016510 | ISPOR Workshop: DETERMINING UTILITY OF MULTI-ATTRIBUTE HEALTH STATES: NEW MEASUREMENT AND ANALYTIC APPROACHES | We drafted the workshop proposals together, based on the workshop previously held at the ISPOR 7thAsia-Pacific Conferencein Singapore. Following the conference in Singapore, the slides and content was refined and discussed by email prior to the trip, and face-to-face in Vienna. The workshop was conducted Wednesday November 2nd, in the very last slot of the conference. The contents were, very briefly, background and introduction (Nan), quality control issues (Mark), DCE-modeling and constrained models (Kim), and the hyreg command (Juanma). We extensively explained how to set-up the data file to run the commands, but also we focusedthe attention on interpretation of the output, specifically the most complex, i.e., the heteroscedastic models. | Juan M. Ramos-Goñi | Valuation | 9885 | Completed | 2016 | 2016 |
| 2016430 | Issue panel and Workshop at ISPOR Singapore 2016 | A 1-hour workshop plus a 1-hour Issue panel, both conducted by Nan Luo, Kim Rand-Hendriksen, Mark Oppe and Juan Manuel Ramos-Goñito ISPOR 7thAsia-Pacific Conference, Sep3-6, 2016, Suntec Singapore Convention & Exhibition Center. Singapore | Juan M. Ramos-Goñi | Education and Outreach | 13490 | Completed | 2016 | 2016 |
| 2016570 | Anchoring discrete choice experiment values at 0=death for the EQ-5D-Y | AbstractObjectives:To date there have been no value sets tosupport the use of the EQ-5D-Y in cost-utility analysis. DCE can be used to obtain values on a latent scale, but thesevaluesrequire anchoringat 0 = dead to meet the conventions of QALY estimation.The primary aim of this study is to compare four preference elicitationmethods for anchoring EQ-5D-Y values. Methods:Four methods were tested: VAS, DCE (with a duration attribute), lag-time TTO and therecently developed‘location-of-dead’(LOD)element of the PUF approach. Adult respondents were asked to value both EQ-5D-3Lhealth states from an adultperspective(considering their own health)and EQ-5D-Y health states from a child perspective (considering the health of a 10yearold child). All respondents completed valuation tasks using all four methods,under both perspectives. For a subset of respondents the instrument was controlled for, i.e. EQ-5D-Y healthstates were valued under both perspectives. Results:Three-hundred and forty-nineinterviews were conducted. Overall, respondents gave lower values under the adult perspective compared to child perspective, withsomevariation across methods. The meanTTO value for health state33333was about equal to dead in the child perspective and worse than deadin the adult perspective. The meanVAS rescaled value for33333 was also higher in the child perspective thaninthe adult perspective. The DCE with duration results followed the samepattern, i.e. positive child perspective valuesandnegative adult perspective values, though themodels were notconsistent. The LODmedian rescaled value for 33333 was negative under both perspectives, and higher in the child perspective. When asked directly about their prioritisation preferences, 65%of respondentsindicatedthat treating adults andtreatingchildrenshould have same priority. Discussion:There was broad agreement across all methods. Values for 33333 tendedto be negativeforthe adult perspectiveand closer to 0for the child perspective. Potentialcriteria for selectinga preferred anchoring methodare presented. We conclude by discussingthe decisionmaking circumstances under whichutilities and QALY estimates for children and adults need to be commensurate in order to achieve allocative efficiency. | Nancy Devlin | Valuation | 111090 | Completed | ||
| 20170220 | An EQ-5D-5L value set for the Vietnam population | Data collection was implementedfrom November –December, 2017.The value set was disseminated in a national conference on Health Technology Assessment in Nov 27, 2018. Detail of the conference can be found here. The value set has been introduced to the research network in Vietnam.Manuscript was developedand submitted to “Value in Health”in Nov 14, 2017. The current status is “Waiting for reviewer selection”.An abstract of study results has been sent to iHEA conference and currently waiting for their decision. | Hoang Van Mi | Valuation | 35775 | Completed | 2017 | 2018 |
| 2016630 | An online DCE study to support the development of an EQ-5D-Y value set for the UK | Background: The EQ-5D is the most widely used health-related quality of life questionnaire in cost-utility analysis internationally, and a version of it, the EQ-5D-Y, has been developed for use with young people. Recent work from members of the EuroQol Group has demonstrated that using existing adult EQ-5D-3L value sets for EQ-5D-Y states is inappropriate. New valuation exercises are needed for the EQ-5D-Y but these face a number of challenges not present in the adult counterparts. For example, if adults complete these new exercises, then what perspective should they use in evaluating the states: their own health or the health of a child? If children/adolescents’ preferencesare sought, what elicitation task should be used to obtain them? There is no clear guidance about these issues in the literature, but research conducted to date provide some directions. Such guidance suggests that if adults are asked to value EQ-5D-Y states, they should consider the health of a child and if children/adolescents are included in the task, then a choice-based method such as discrete choice experiment (DCE) might be preferable to approaches such as time trade-off or standard gamble. The aim of this study was to obtain latent scale discrete choice utilities from adults in the general population to develop a future EQ-5D-Y value set in the United Kingdom. Methods: Preferences were obtained using a DCE from a representative sample in terms of age, gender, social grade and nation, of adult members of the UK general population belonging to an online panel. Adults completed the valuation survey from the perspective of a 10-year-old child. A blocked Bayesian efficient design was used to identify pairs of health states, with fifteen pairs presented to each respondent. DCE data were modelled using a main effects multinomial logit and mixed logit models. Model performance was evaluated using goodness-of-it assessed with Akaike information and Bayesian information criteria, and probability prediction accuracy. Results: 1,000 participants completed the survey and overall the distribution of demographics was similar to the UK general population. The modelling exercise suggested consistent latent utilities forboth multinomial logit and mixed logit models. Mixed logit yielded better goodness-of-fit as indicatedby the smaller AIC and BIC and more accurate probability predictions compared to the MNL. Conclusion: Our paper has produced a latent scale EQ-5D-Y value set. The next step will be to combine this latent scale utility function with the most appropriate method to anchor it on the quality-adjusted life years (QALY) scale to obtain a potential EQ-5D-Y value set in the UK. A separate study is underway to test alternative approaches to anchoring. | Nancy Devlin | Valuation | 36450 | Completed | 2016 | 2017 |
| 20190150R1 | Exploring non-iterative time trade-off methods for valuation of EQ-5D-5L health states | Introduction: The EQ-VT protocol uses both cTTO and DCE methods to elicit health preferences. The cTTO method uses a fixed starting point and iterative route, which is susceptible to bias. It requires face-to-face interviews and the quality of the cTTO data can be influenced by the performance of interviewers. An intense quality control (QC) process was introduced in order to obtain high quality values. To develop an easier-to-administer version of TTO method, in this study, we tested two TTO variants, one known as non-stopping TTO (hereafter refereed as nTTO) and the other as open-ended TTO (hereafter refereed as oTTO). This study aimed to compare the performances of these two non-iterative TTO methods with cTTO. A secondary aim of this study was to assess the health preferences between the urban and rural populations in China. Method: A total of 31 EQ-5D-5L states (25 orthogonal array+ 5 mildest + 1 pits) were selected and divided into 2 blocks of 16 health states. We decided to collect 70 observations per state per method. The total sample is 420 as there are 2 blocks of health state and three different methods, i.e., 70 observations * 2 blocks * 3 methods. We recruited 7 undergraduate students from Guizhou Medical University as interviewers. For each method, four quota criteria were set up aiming to recruit a representative sample of China, namely gender, age, education attainment and Hukou (urban/rural). We compared the performance of these three TTO methods in terms of value distribution, logical inconsistency, feasibility and their modelling performance. To explore the preference differences, we combined the data of this study with another study to boost statistics power. Both univariate and multivariate linear regression analyses with TTO values as the dependent variable were used to examine the differences in mean health state valuations between urban and rural participants. A 20-parameter main effects model with 20 interaction terms differentiating urban and rural participants were also estimated. Results: The data collection was conducted between September 2019 and September 2020 in Guizhou Province, China. The final sample size was 422. On average, the time spent for completing the 3 practices was 2 to 3 minutes faster when used the nTTO and oTTO method, with oTTO being the fastest one. Similarly, both non-iterative methods needed less time in the formal valuation tasks and the cumulative time reduction for the whole interview (practice + real task) was around 10 minutes. In terms of logical inconsistency, both TTO variants showed higher inconsistency frequency, but similar severe inconsistency frequency compared with cTTO. Both variants produced an overall mean value close to cTTO method, with nTTO the lowest among three methods (0.222) and oTTO the highest (0.266), but the mean values were not statistically different. cTTO model performed better than the models of two non-iterative TTO methods. Both univariate and multivariable linear regression analyses showed that rural participants tended to value health states lower than urban participants regardless of severity of health states. The unadjusted and adjusted overall mean differences between the two groups were -0.041 (95% confidence interval [CI] -0.077, -0.004, p-value=0.031) and -0.040 (95% CI -0.078, -0.002, p-value=0.038), respectively. Discussion: Overall, both TTO methods demonstrated potential in valuing health states, even though their data distributions and modelling performance were inferior to the cTTO method. A clear advantage of both methods is the less time needed for completing the wheelchair examples and practice states, and completing the formal EQ-5D-5L states valuation. This suggests the higher feasibility of these two methods. In addition, the mean values obtained, the percentage of negative values and the value range obtained through the three methods were not statistically different. In terms of preference differences between urban and rural populations in China, there were small, yet statistically significant, differences in EQ-5D-5L health state preferences. | Zhihao Yang | Valuation | 68600 | Completed | 2019 | |
| 20190830 | travel scholarship for Xueyun Zeng | Nan Luo | Education and Outreach | 6190 | Completed | 2019 | ||
| 2013060 | Testing feasibility, reliability and validity of the health-related quality of life instrument EQ-5D-Y in children and adolescents with asthma- a cross-sectional pilot study | Ann Charlotte Egmar | Youth | 2880 | Completed | 2013 | ||
| 2013040 | An investigation of EQ-5D-5L values in the United Arab Emirates: a feasibility study | Background:Nofive-level EuroQolfive-dimensional questionnaire(EQ-5D-5L) value sets are currently available in the Middle East toinform decision making in the region’s health care systems.Objec-tives:To test the feasibility of eliciting EQ-5D-5L values from ageneral public sample in the United Arab Emirates (UAE) using theEuroQol Group’s standardized valuation protocol.Methods:Valueswere elicited in face-to-face computer-assisted personal interviews.Adult Emiratis were recruited in public places. Respondents com-pleted 10 time trade-off tasks and 7 discrete choice experiment tasks,followed by debriefing questions about their experience of completingthe valuation tasks. Descriptive analyses were used to assess the facevalidity of the data.Results:Two hundred respondents were inter-viewed in December 2013. The face validity of the data appears to bereasonably high. Mean time trade-off values ranged from 0.81 for themildest health state (21111) to 0.19 for the worst health state in theEQ-5D-5L descriptive system (55555). Health states were rarely valuedas being worse than dead (6.2% of all observations; 10% of allvaluations of 55555). In a rationality check discrete choice experimenttask whereby a health state (55554) was compared with another thatlogically dominated it (55211), 99.5% of the respondents chose thedominant option. Most of the respondents stated that their religiousbeliefs influenced their responses to the valuation tasks.Conclusions:Our results suggest that it is feasible to generate meaningful health-state values in the UAE, though some adaptation of the methods maybe required to improve their acceptability in the UAE (and othercountries with predominantly Arab and/or Muslim populations).Keywords:EQ-5D-5L, quality of life, religion, stated preference, TTO,United Arab Emirates, utilities.Copyright&2015, International Society for Pharmacoeconomics andOutcomes Research (ISPOR). Published by Elsevier Inc. | Nancy Devlin | Valuation | 20000 | Completed | 2013 | 2013 |
| 20170390 | Request for funding to cover expenses relating to a proposed visit of Henry Bailey to spend 1 month at the University of Leeds with Paul Kind | Thisis a preliminary report on ourstudy that investigates the links between EQ-5D and happiness. Firstwe review what has been published about EQ-5D and happiness. We then go on to a preliminary investigation of the relationships between happiness ratings and EQ-5D VAS and utility values in 5 data sets being: RLMS (Russia), GEM (4 Caribbean Basin countries), CliK (West Yorkshire), HSE and a Gallup International dataset covering Latin America. We then compare the findings of our analyses with those of previous studies that have investigated happiness and EQ-5D. Graham et al (2011) conducted the first analysis thatattempt to identify the impact of the 5 dimensions of EQ-5D on happiness. In a Gallup poll conducted in 2007, 14,000 respondents from 18 Latin American countries completed a survey that included the EQ-5D-3L instrument, a 0-10 VAS and Cantril’s ‘Ladder of Life Scale’, a 0 to 10 scale anchored at ‘best possible life’ (10) and ‘worst possible life’(0). This was the first data set that allowed EQ-5D dimensions and VAS scores to be mapped on to life satisfaction or happiness data. EQ-5D score was found to be strongly and significantly correlated with subjective health status (VAS) but much less so with life satisfaction (Cantril’s). Material goods (assets, telephones etc) were found to be more important to life satisfaction than to health satisfactionbyvirtue of having higher regression coefficients in the former. Levels 2 and 3 in EQ-5D dimensions were found to have less impact as explanatory variables in regression models with life satisfaction as the dependent variable than those with subjective health satisfaction as the dependent variable.Dolan and Metcalfe (2012) analysed the impact of the EQ-5D domains on Subjective Well Being (SWB) using regression models and life satisfaction questions:Overall, how satisfied are you with your life? (Using a 0-6 scale)Overall how did you feel yesterday? oRespondents had to express the strength of feeling on a 0-6 scale friendly, lethargic, stressed, happy, sad, calm, angry, tired, depressed and worried. oThe difference between average of positive and negative affect was used to create a new variable: ‘Day affect’Dolan and Metcalfe regressed Life Satisfaction (LS) and Day Affect (DA) separately on the EQ-5D domains using a utility model taken from Shaw et al (2006, i.e. including the D1, I2, and I3 interaction terms). This allowed a comparison of the impact of the EQ-5D dimensions on the LS and DA models with health preference (i.e. by comparing coefficients in the SWB models with the Shaw et al (2006) model). AD2 had a similar impact on both utility and SWB models. The remaining coefficients in the SWB models were much smaller than in the utility models, several of them were counter-intuitive (e.g. taking positive values), and none of the MO, SC or UA2 coefficients were significant at the 5% level in the two SWBmodels. Mukuria and Brazier (2013) used a SWB measure taken from the SF-6D instrument on EQ-5D states in a sample of 15,824 patients from a hospital in Wales. The SWB measure used in this study was the SF-36 question: Have you been happy?Respondents had five response options: All of the time; most of the time; some of the time; a little of the time; and none of the time. Ordered logit analysis produced a model with logically consistent (level 3 greater impact than level 2) and significant odds ratios at the 5% level (except MO3, SC3, UA3 and PD30). Anxiety/Depression was found to have the biggest impact.Karimi and Brazier (2016) investigated the meanings of and interrelationships between health, health-related quality of life (HRQoL) and Quality of Life (QoL). They pointed out that health is one (small) element of QoL, and that QoL is influenced by many ‘non-health’ factors. Hence, we should expect that EQ-5D dimensions would have different effects on HRQoL and QoL. Karimi and Braizer (2016) concluded that the HRQoL concept overlaps both health and QoL factors.Even within the domain of ‘health’ Shah et al (2016) reported that over 40% of their sample of 436 respondents identified factors that they considered to be important to health that were not included in EQ-5D. Sun et al (2016) analysed data from a survey undertaken in China (n=8,000) which included EQ-5D, EQ-VAS and a happiness question taken from the World Values Survey. Mean SWB was observed to increase with self reported health and with VAS values, and to decrease with increasing levels of problems on EQ-5D dimensions. OLS and ordered logit models showed logically consistent and significant (to the 5% level) coefficients for MO and AD with the latter having the highest absolute values. | Henry Bailey | Education and Outreach | 6300 | Completed | 2017 | 2017 |
| 20190960 | An exploratory analysis of the Pain/Discomfort dimension of the EQ-5D-5L in people living with physical and mental health conditions | Research into the Pain/Discomfortdimensionof EQ-5D instruments has identified problems with interpretation because two different aspects of health are combined in a single question. Studies have also shown that interpretation difficulties may arise because of the wording of response options, particularly concerning the differences between ‘slight’ and ‘moderate’ (levels 2 and 3), and ‘severe’ and ‘extreme’ (levels 4 and 5). This study will explore what is behind the Pain/Discomfort dimension of the EQ-5D-5L, drawing comparisons to other pain and discomfort items collected in the Extending the Quality-Adjusted Life Year (E-QALY) psychometric study in Australia. Analyses will include: descriptive statistics of response data; correlation analyses 2exploring the associations between EQ-5D-5L Pain/Discomfort and other E-QALY pain and discomfort questions; regression analyses assessing the extentto whichthe E-QALY pain and discomfort items are captured by EQ-5D-5L Pain/Discomfort; and discriminatory power analyses of the EQ-5D-5L with and without other E-QALY pain and discomfort questions. Furthermore, we will explore variation in reporting patterns for pain and discomfort questions across individuals living with mental health and physical health conditions, respectively. This sub-analysis arose from findings of the face validity study of the E-QALY project in Australia, which indicated that people with a mental health condition associated the Pain/Discomfort questions with emotionalpain or discomfort rather thanphysicalsensations. Overall, findings from this study will provide a better understanding of the Pain/Discomfortdimensionof the EQ-5D-5L, including implications for the complementary use of the EQ-5D-5L and E-QALY, and the future bolt-on agenda. | Lidia Engel | Descriptive Systems | 15000 | Completed | 2020 | |
| 20190040 | monetary support for ongoing Tunisian valuation study | The results of the study were published here: Chemli J, Drira C, Felfel H, Roudijk B, Al Sayah F, Kouki M, Kooli A, Razgallah Khrouf M. Valuing health-related quality of life using a hybrid approach: Tunisian value set for the EQ-5D-3L. Qual Life Res. 2021 May;30(5):1445-1455. doi: 10.1007/s11136-020-02730-z. Epub 2021 Jan 14. PMID: 33447958; PMCID: PMC8068700. | Hajer Falfel | Valuation | 5050 | Completed | 2019 | |
| 20190500 | Funding a two-day Academy Workshop in Cape Town in January or February 2020. | Aims: Tobuild capacity in the field of measurement of HRQoL, using the EQ-5Dand to stimulate interest in the continued and expanded use of the EQ-5D in Africa.Outcomes: Greater utilisation of the EQ-5D as a patient-reported outcome (PRO) measure across the different countries and contexts; improved methodology, analysis and reporting of studies using the EQ-5D; establishment of researcher networks within and between countries; possible interest in doing national or language valuation studies; greater attention to methodological research about EQ-5D; and an increased interest in HTA and CUA by health economists and policy makers. Participants: These will include threeinternational experts to act as facilitatorsand 46participants. Researchers from Africa whohave published several papers using the EQ-5D as an outcome measure, particularly methodological papers and who have used the measure for HTAwill be invited.Participants will be identified by trawling through the literature.Researcherswho are already affiliated and/or supported by the Foundationand other stakeholdersidentified by snowballing will also be invited.Travel bursaries will be awarded to 20colleagues from the African region and two from South Africa.Programme: Each session will be devoted to a specific theme, based on theparticipants’ experience, needs and expectations identified through a pre-meeting survey. These themes are likely to include e.g. validation of the different versions, use of the EQ-5D in clinical and population-basedstudies and valuation studies. Introductory sessions will be offered on the use forthe EQ-5D in HTA, validation and valuation methodology if required.(250words) | Jennifer Jelsma | Education and Outreach | 74030 | Completed | 2020 | 2020 |
| 2012040 | Bolt-on proposal | Over the last few years there has been discussion within the EuroQol Group about the development of condition specific "bolt-ons" to the standard EQ-5D. Bolt-ons are extensions of the standard five dimension instrument, implying that a dimension or multiple dimensions will be added to the EQ-5D as to broaden the coverage of the health measurement continuum. Bolt-ons can be of substantial scientific and strategicinterest to the EuroQol group. There are several reasons for this interest. The most obvious and arguablymost important reason is user demand. Disease specific utility measures have begun to be developed and published in the literature. Also, agencies outside the EuroQol group are interested in funding research in this area. From a scientific point of view there are further grounds for exploring the development of condition specific bolt-ons to the EQ-5D. There is evidence that the EQ-5D does not capture all possible variations in disability caused by various conditions, in areas such as cognition (Krabbe et al, 1999), vision or hearing loss, (Espallargues et al, 2005; Brazier et al 2004), but also sexual function, incontinence or changes in someone’s appearance (Kaarlola et al, 2004). Two recent studies by Pickard and Lin (2010) and Solem et al (2011) show a number of condition areas where developingbolt-ons to the EQ-5D could be justified.Moreover, more and more so-called ‘mapping’algorithms to the EQ-5D are being used that are based on a link function between the EQ-5D and a condition specific non-preference based measure, often by means of a simple regression on the index values. Two recent review studies showed that many of these mappings are of very poor quality (Brazier et al, 2010, Mortimer et al, 2008), but the increasing use of these mappingsindicates that there is an interest for index values for extensions to the EQ-5D.There are two known studies that can be seen as initial bolt-on endeavours. The first is the addition of a cognitive dimension (Krabbe et al, 1999) and the second a sleep dimension (Yang et al, 2008). Both were not condition specific. In the cognition study valuations were performed and showed systematically different values compared to the standard EQ-5D, whereas content validity improved. It was concluded that the addition of the cognition dimension was justified. The secondbolt-on valuation study showed that the sleep dimension had no significant incremental disutility and therefore adding a sleep dimension to the EQ-5D was discouraged. Two recent studies aimed at the development of bolt-ons to the EQ-5Din the areas of vision and psoriasis (Yang et al, 2012; Swinburn et al, 2012). Vision had a significant impact on the EQ-5D-3L although differences between the EQ-5D-3L states and the corresponding states including the Vision dimension were not significant. Two psoriasis related dimensions (Skin irritation and Self-confidence)had a significant impact on the EQ-5D-5L. | Bas Janssen | Descriptive Systems | 40950 | Completed | 2012 | 2013 |
| 20180560 | Non-Linear Time Preferences in Discrete Choice Experiments | Introduction One issue currently preventing the wider adoption of discrete choice experiments (DCEs) involves the differences in scale found between these studies and those using a time trade-off (TTO) valuation technique. Specifically, values for severe health problems are often much lower using a DCE approach. However, research has also shown that DCE models specifying non-linear time preferences produce utility estimates on a similar scale to the TTO. While multiple discount factors have been proposed, no study has directly compared different discount methods using EQ-5D data. Methods We compare three different discount factors (exponential, hyperbolic, power) to constant proportionality using two recently completed DCE studies from the US (N=2,260) and Australian (N=944) general population. Each of the four specifications is judged by face validity (utility values, number of disordered levels), model fit (AIC, BIC), and predictive validity (Χ2 and Lin’s 𝜌, using an 80/20 split). All tests are performed using both the conditional logit and Zermelo-Bradley-Terry (ZBT) models to examine the consistency across valuation methods. Results Across both studies and regression models, we find that specifications incorporating non-linear time preferences have higher utility values for severe health problems than those using constant proportionality. Models specifying non-linear time preferences also had better fit (lower AIC and BIC) and greater predictive validity (higher Χ2 and Lin’s 𝜌). The hyperbolic and power discount functions produce nearly identical results (<0.001 difference in utility values for both models in the Australian study). Discussion We find additional evidence that DCE studies should account for non-linear time preferences in the valuation model. However, we do not find evidence of a dominant discount function. The exponential discount function produced fewer disordered levels than the hyperbolic or power functions, but it had poorer model fit and predictive validity across three of the four study/model combinations. | John Hartman | Valuation | 14800 | Completed | 2019 | 2019 |
| 2013120 | Rescaling relative health-state values from discrete choice experiments unbiased onto the QALY metric | Background:More attention is devoted nowadays to simple discrete choice(DC)tasksbetween descriptions of health states to obtain ordinal data that can subsequently usedin statisticalmodels to derivehealth-state values. Such values are often used for the computationof quality-adjusted life years(QALYs). A requirement of the conventional QALYs is that there should be a fixed localization of dead atzero. One strategy in DC experiments is to include the state‘dead’ as a choice optionthat may be preferredover states considered as worse than dead. However, this may become cumbersome if subjects have difficulty with the appraisal of ‘dead’ and consider all health states at least better than dead.Objective: To introduce a novel method that calibrates health states and the localization of ‘dead’together in a less biased way.Methods: Data from the Measurement and Valuation of Health study were analyzed. Three different probit modelswere estimated. Thefirst model(classical Thurstonianmodel)used response data fromassessmentsofholistic(no consideration of the levels of the attributes)health states andthe state ‘dead’. Subsequently, the values for the best and worst state of this modelwere used as anchors for another model without‘dead’. This second model used dummies for thelevels of thehealth-state attributesand was calibrated on the range of the first model. The result of thesecombinedmodelswerecompared to a ‘traditional’model. Here,attribute-level dummy variables and a ‘dead’-dummy variablewere analyzed.Results: All three modelsproduced regression coefficientsthat werelogically orderedand estimated health-state values wererathersimilar.Sensitivity analysis of the novel calibration method showed that the proportion of people who considered certainstates as worsethandead does not affecttherelative health-state values.Conclusion: The novel calibration method proved to be feasible in practice. Several theoretical advantages and limitations of this method were identified and discussed. | Alexander Arons | Valuation | 30000 | Completed | 2013 | 2016 |
| 2016240 | Assessment of the EQ-5D-5L compared to EQ-5D-3L and generation of population norms in England | There are two versions of EQ-5D, a brief preference-based utility measure that can be used in economic evaluation, one with 3 severity levels (3L) and one with 5 levels (5L). In England, EQ-5D-3L can be scored using the existing United Kingdompreference-based tariffwhile the EQ-5D-5L can be scored using a crosswalk to the 3L tariff or using the new English tariff. This study compared the performance of the EQ-5D-3L (n=930,200) against the EQ-5D-5L (n=881,810) using evidence from the GP Patient Survey (GPPS) in England. Comparison was based on feasibility (missing data) distribution across the dimensions, ceiling and floor effects, and discriminative properties using Shannon’s indices. Utility scores for the two versions were compared in terms of absolute and standardized effect sizes for groups with known differences categorised by self-reported long-term health condition, limitations in activity, and sociodemographic factors for the full samples. In addition, matched samples (age, gender and comorbidities) were used to compare utilities for subgroups with long-term health conditions. While the 3L and 5L had similar levels of missing data across dimensions, there was evidence of improved performance in the 5L compared to the 3L in terms of reduced ceiling effects (34.9%5Lvs. 44.4%3L) and re-distribution across the other levels, particularly for mobility, usual activities and pain/discomfort dimensions. There were very few respondents reporting the lowest level in either version (0.02%5Lvs. 0.03%3L). Mean (SD; range) 3L utility values were 0.804 (0.265; -0.594 to 1), mean 5L values from the cross-walk were 0.796 (0.237; -0.594 to 1) and mean utility values for the 5L were 0.859 (0.205; -0.281 to 1). The5L utility values tended to be higherthan corresponding 3L valuesbutthe variance in the 3L scores was larger(e.g. males means 0.8605Lvs 0.8083L; standard deviations 0.2055Lvs 0.2613L). Cross-walk values were smaller or equivalent to 3L values and smaller than 5L values(males,mean(SD):0.799 (0.236). Allversions were able to discriminate in the expected direction between groups with known differences e.g. younger respondents had higher utility scores than older respondents. The 3L had larger absolute mean differences between most groups with known differencesbutthis was mediated by the larger variances thus standardised effect sizes across the threeversions were comparable. For example, comparing those with arthritis/joint problems to those without, absolute differences were 0.3113Lvs. 0.273cwvs. -0.2325Landeffect sizes were 1.153Lvs. 1.13CWand -1.105L.Differences between those with and without a condition were smaller in the matched samples with small and similar differences across the three versionsfor some conditions (angina/heart problems, asthma/chest problems, cancer, blind/visual problems, deaf/hearing problems, diabetes, epilepsy, kidney/liver problems, learning difficulties). This study adds to what is known in terms of comparison based on utility values using the latest English tariff for the 5L | Clara Mukuria | Descriptive Systems | 16000 | Completed | 2016 | 2016 |
| 20190820 | travel scholarship for Qingqing Chai | Nan Luo | Education and Outreach | 8240 | Completed | 2019 | ||
| 20190810 | travel scholarship for Olivia Ernstsson | Jeffrey Johnson | Education and Outreach | 7819 | Completed | 2019 | ||
| 75-EO | Presenting E-QALY study results in 2020 ISOQOL | The extending the QALY project (E-QALY), funded by the UK MRC and EuroQoL Research Foundation aimed to develop a broad generic measure of quality of life for use in economic evaluation across health care, social care and public health. The study had 5 development stages: 1) establishing the domains; 2) generating a long list of items; 3) testing the face validity of the items; 4) psychometric testing of the items; 5) valuation of selected items. Work was undertaken in six countries: England, Argentina, Australia, China, Germany and USA. Extensive consultation with stakeholders, experts and the public was used to refine the domain structure and identify high performing items to measure each selected domain. We aim to present the development process of the E-QALY project at the 2020 ISOQOL Annual Conference, Prague, Czech. The symposium will discuss the opportunities and challenges of developing a new international preference-based measure. John will provide the rationale for developing the measure and an overview of the project. Clara will present findings from Stages 1 and 2 where the domains and items for the measure were identified. Zhihao will focus on the face validation results with a particular focus on China (Stage 3). Ole will discuss the psychometric testing with particular focus on Germany (Stage 4). Donna will present the findings from the valuation stage. Finally, Madeleine King will start the discussion by providing her view on the approach taken and the resulting measure. | Zhihao Yang | Descriptive Systems | 19400 | Completed | ||
| 20180580 | EQALY International Psychometric Analysis: Argentina study | The aim of thisproject is to support item selection for a new instrument development (Extending the QALY (E-QALY project) that aims tocapture the changes in quality of life from interventions in health and social care that would be fit for the purpose of inclusion in economic evaluations. The core domains for the instrument have been identified and a pool of potential items have been proposed. Face validity has been undertaken in 5 countries (Argentina, Australia, China, Germany and USA) as well as the UK. Psychometric work based on a large survey is being undertaken in the UK from September through to December 2018 in order to identify items for the new measure. This proposed study will collect and analyse additional Argentina data to support the psychometric work and future item selection. It is the only Spanish speaking country in this initial multi-country team, Spanishbeingthe second most common language in the world. We will also explore the relationship of HRQoL and finnancial coping, patient and family coststhe whole sample andin different disease groups.Data on the E-QALY test items, plus EQ-5D-5L and other existing instruments, will be collected from a sample of 500 members of the public, of whom 400willreport a health condition using a commercial panel. This data will be analysed in line with the analysisof the UK survey data using basic psychometrics and Item Response Theory (IRT). These findingswill be interpreted in the light of evidence from the face validity work, and country specific recommendations will be made. These will be discussed in conjunction with other international evidence to support item selection for the new instrument. | Federico Augustovski | Descriptive Systems, EQ-HWB | 20425 | Completed | 2019 | |
| 78-RA | Measuring population health status at a time of national crisis | The study collected EQ-5D-5L and 3L from the UK population in an online survey conducted in the early weeks of the coronavirus pandemic in 2 waves about a month apart. These data were compared with EQ-5D-5L data collected as part of the Health Survey for England (2017) survey. Additional 3L data were collected during both waves, including a modified form derived from 5L. The second wave also fielded EQ-HWB. Spin-off activity from this study continues in other derivative studies. | Paul Kind | Populations and Health Systems | 33807 | Completed | 2020 | 2022 |
| 2016210 | Measuring concordance between patient and proxy raters of EQ-5D using fuzzy set theory | BACKGROUND: The reliability of raters is important to evaluate in quality of life research. For instance, proxy raters may be sought when patients have difficulty to respond on their own behalf. It is, thus, vital to understand how multiple assessments interrelate and develop informative measures of concordance (MCs). However, commonly used MCs have limitations. Pearson’s (Spearman’s ) correlation coefficient, 𝜌, focuses on the quality of fit, not reflecting systematic differences in scores. Linear regression coefficients, 𝛼, are diluted (drawn towards 0) and heteroscedasticity can beproblematic. Intraclass correlation coefficients (ICC) may face conceptual difficulties as the observations are not exchangeable (patient vs proxy) and the judges vary between pairs. Additionally, all of the above (but regression coefficients) are symmetric. Our aim was to propose the use of MCs derived from fuzzy set theory and illustrate their usefulness. METHODS: Data from a longitudinal natural history of stroke study was used, which included patient & proxy assessments of the EQ-5D-3L (n=124 dyads). We focused on the EQ VAS assessment in four waves (months: 0, 1, 3, and 6). VAS assessments were rescaled into [0,1] intervals, and the score was interpreted as a membership function from fuzzy set theory measuring how much a given patient’s health state resembles perfect health. We first defined several asymmetric MCs measuring the degree to which a patient considering their own state as perfect (say, 𝑥 ∈[0, 1]) implies the proxy considering this state perfect (𝑦∈[0, 1]), or vice versa. For that purpose we used various OR operators (Zadeh, bounded sum, product) along with 𝑥 ⇒𝑦⇔¬𝑥∨𝑦 equivalence. We then defined the both-way counterparts as conjunction of implications plus a ratio of a (scalar) cardinality of intersection and of union. All the measures yield values in [0,1]. The results were averaged for the whole dataset. We measured the asymmetry of implications as the difference between 𝑥⇒𝑦 and 𝑦⇒𝑥. Bootstrapping was used to calculate 95% confidence intervals (95%CI).RESULTS: For the first wave we obtained standard MCs: 𝜌= 0. 359, 𝛼= 0. 301 or 𝛼= 0. 427(explaining patient with proxy, or vice versa, notably both <1), 𝐼𝐼𝐼(2, 1)= 0. 31. We got the assessment of patient ⇒ proxy with fuzzy measures in the range 0.583–0.858 and of proxy ⇒patient: 0.678–0.953. The implication was stronger in the latter direction (statistically significant, i.e. bootstrap 95%CI above 0 for all the measures). The differences for other waves did not show this significance. Hence, considering a given state as perfect by proxy implies agreeing by patient (considering health worsened by patient implies agreeing by proxy) more strongly than vice versa, but the asymmetry disappears in time. The symmetric MCs for the first wave ranged from 0.536–0.811 (0.711 for ratio of cardinalities).DISCUSSION: Concordance between various utility assessments can be defined using fuzzy set approach, also allowing to define a directed (asymmetric) version, and reflect possibly non-trivial interrelations. Statistical inference is still possible, e.g. via bootstrapping. To build on this basic conceptual framework, future research and testing on different datasets will help to verify properties and enhance interpretation of the results. | Simon Pickard | Valuation | 7500 | Completed | 2016 | 2016 |
| 2016090 | Developments in preference-based measures of health: scoring approaches and guidance | Summary upon completion of workshop: This workshop helped to promote the research and agenda of the EQ group, particularly its work in valuation. ISOQOL organizers were happy with the workshop as there was a lot of interest, with 18 registrants. Of them, 12 completed the workshop evaluation survey designed by ISOQOL. It is attached. To summarize, the ISOQOL workshop was positively received by the attendees. Several were conducting valuation studies and they were very interested in the content. Thus, although it was designed for the relative novice, the content was current and relevant to scientists with different levels of experience. There was a slight issue with the materials, as the email containing the pre-reading papers was not received by all the attendees. This was a logistic issue that was mediated by the ISOQOL office and was beyond our control. Otherwise, the ratings were generally high, and many indicated interest in a full-day workshop. | Simon Pickard | Education and Outreach | 13050 | Completed | 2016 | 2016 |
| 20170250 | Cross-sectional validity and feasibility of the self-report EQ-5D-Y as a generic Health Related Quality of Life outcome measure in children and adolescents with Juvenile Rheumatoid Arthritis (JRA) in Western Cape, South Africa | Juvenile IdiopathicArthritis (JIA) is an autoimmune, chronic rheumatic disorder with episodic flare ups and remissions. Itoccurs in children 16 years and younger, causing short orlong-term disability (5). Impairments resulting from the inflammatory processes and leading to disability include on-going pain, limited range of motion, joint stiffness and decreased physical fitness. Other manifestations may include behavioural problems, social isolation, depression and anger(6). Skeletal growth may be delayed or distorted in severe cases of JIA, as growth hormone (GH) levels are low and premature fusion of the epiphyses at the hipmay occur (7). There is little consensus regarding the precise prevalence of JIAworldwide due to a lack of standard diagnostic criteria(8). The prevalence rate in developed countries varies in different population studies from seven to 400 per 100 000 children(9), (10), (11), (12). There are no accurate prevalence studies for South Africa (8), it would howeverappearthat there is a higherprevalence in North America and Europe compared to Asia and Africa(11).Limited researchon African or South African populations with JIAis thought to be due to limited resources being directed at the high burden of infectious diseases such as Human Immunodeficiency Virus (HIV)and Tuberculosis (TB)in these regions, rather than to JIA(8). The cause of the disease is thought to beasthe result of an interaction of genes.In 2004, a study was performed in South Africa which investigated the association of the HLA-DRB1 allele with rheumatoid arthritis. The study showed a strong relationship between erosive rheumatoid arthritis and the presence of such alleles, withconsistencyacross race groups –similar to a studyin Europe, North America and Asia(13). The pathophysiology of JIAincludes the presence of autoantibodies or autoreactive T cells (14), which attack the body, causing the joint synoviumto swell and produce excess fluid, resulting in the breakdown of cartilage and friction at the joint site with movement-leading to stiffness, pain and swelling. No cure exists, however first line treatment includes NSAID’s, as well as corticosteroid injections, physical therapy and disease modifying anti-rheumatic drugs (DMARD’s). DMARD’s are a group of disease modifying drugs which aim to slow down the progression of the disease(15).The psychometric properties of the diseasespecificPedsQLRheumatology Modulehavebeen compared with other disease specific outcome measures, such asthe Juvenile Arthritis Quality of LifeQuestionnaire (JAQQ), the Paediatric Rheumatology Quality of Life Scale (PRQL), and the Childhood Arthritis Health Profile (CAHP), but not with a generic outcome measure(16). A study conducted bySawyer et al. 2003in Southern Australia investigated the relationship between HRQoL, physical functioningand pain in children with JIA, using the PedsQL Rheumatology Module Arthritis module. The study indicated that the children experienced themost problems with physical functioningand theleast problems in social functioning. The children with higher levels of pain, reported lower levels of functioning in the physicaland emotional dimensions(17).The Juvenile Arthritis Multidimensional Assessment Report(JAMAR) has beenused in clinical practice to improve the care of children with JIA(18)(19)(1). The performance of the JAMAR was favourably compared to the PedsQL Rheumatology Module (1). The EQ-5D-Y has been used to assess HRQoL in children with a variety of health conditions, including JIA(20)(21)(22)(23)but its performance has not been compared to disease specific outcomes. There are at least three outpatient clinics in Cape Town which are dedicated to the management of children with JIA, one of which is at alarge Paediatric Hospital and the other two are based in General Hospitals. In total, there were 219childrenfrom 8-15 years,registeredatthese clinics in 2017, however not all these children attend the outpatient clinics regularly. Many of these children default clinics during a period of remission and only reappear if they relapse. Children typically attend these outpatient facilities with their parentsmonthly if they have been started on DMARDs and every 4 months thereafter if they are on DMARDs and biannually or annually if they are stable off DMARDs. The JAMARis the only outcome measure that is currently used to monitor functional and HRQoL change in the children. However, it is a lengthy instrument and not routinely applied. As the joint damage and symptoms affect HRQoL and can persistinto adulthood in 50% of children (24), it is important to trackHRQoL. The generic EQ-5D-Ymight be appropriate for this use as it can used until the age of 18 years and, while not interchangeable with the adult EQ-5D, it at least articulates with this version which could be used in adulthood.It was hypothesised that the EQ-5D-Y, whereas not yielding the details of the child’s condition to the extent of the JAMAR, would show concurrent validity with the JAMAR. It could thus be used not only to track changes in the child’s HRQoL overtime but also as a screening for increased inflammatory activity. The JAMAR might then be applied in the cases who reported disease flare or a decrease in their HRQoL. | Jennifer Jelsma | Youth | 4850 | Completed | 2017 | 2017 |
| 2016350 | Symposium Sponsorship & Panel Session: 38th Annual North American Meeting of the Society for Medical Decision Making | not available | David Whitehurst | Populations and Health Systems | 15000 | Completed | 2016 | 2016 |
| 2016370 | A qualitative approach to understanding what aspects of health are important to people | The aims of this research project are:To understand what concepts and definitions should form the basis for a EuroQol generic classification systemTo develop and pilot an approach to identifying what aspects of health1are important to people To obtain the views of patients and members of the public about what aspects of health are important to themTo produce a list of candidate items for potential inclusion in a generic classification systemThe project will comprise four stages:Stage 1: Review of English language definitions of the following concepts: health, quality of life, health-related quality of life, and wellbeingStage 2: Development of a survey designed to understand what aspects of health are important to people, with piloting of the draft survey in a focus groupStage 3: Administration of the revised survey to patient and general public samples (n=200), with the aim of generating a list of potential domains for a generic classification system, ranked by importanceStage 4: Checking / triangulation of the stage 3 results using a second focus groupThe study will inform the ongoing research agenda around the measurement of health and health-related quality of life beyond the existing EQ-5D descriptivesystem. | Koonal Shah | Descriptive Systems | 86500 | Completed | 2017 | 2018 |
| 2016220 | An individual-level comparison of EQ-5D-5L values derived from paired comparison and best-worst data | Introduction: Best-Worst Scaling is increasingly used to provide a tariff – a set of “preference based values” for instruments used in public priority-setting. However, the type of BWS – “Case 2” – used for several instruments recently has not been established, only assumed, to provide scores that are linearly related to those that would have been obtained from traditional choice models that require the respondent to choose between whole health/quality of life states. This study is the first robust test of this assumption. Using a unique overall design, it calculates how respondents “rescale” Case 2 “degrees of disutility” into a whole health state in order to make between-state comparisons. Methods: Three hundred and eighty respondents from an internet panel answered a combination of twenty five bestworst tasks and paired comparisons containing EQ-5D-5L health descriptions. The data was analyzed using descriptive statistics, conditional logit models and advanced econometric models and stratified by level of impairment. Results: Pain/discomfort and mobility are for both DCE (23.9%, 23.9%) and BWS (24.4%, 23.3%) the attributes with the highest weight. For the DCE (23.6%) anxiety/depression is has a higher weight than for BWS (18.1%). There is a high correlation between the aggregate coefficients of DCE and BWS (ρ=0.9). However, after rescaling the DCE data with the BWS data the importance of the attributes from the DCE is considerably reduced to zero compared to BWS ranging with a factor from 0.28 for anxiety/depressionto 0.11 for self-care. Discussion: Case 2 BWS scores are related to those from a traditional DCE. However, respondents appear to apply different weights to the attributes, particularly if they have experience of impairment on one or more of these. This may prove to be a strength: it provides insights into, and quantification of, the phenomenon of experienced utility, whereby adaptation effects influence a person’s preference base scores. Conclusion: Replication of these findings may illustrate how a standardized health/quality of life instrument can act as both a national preference-based instrument for priority-setting and a patient reported outcome measure (PROM) for use within specific areas of medicine. Key words: best-worst scaling, discrete choice experiments; EQ-5D, health status, health-related quality-of life, health state preferences; utilities; | Alexander Arons | Valuation | 38250 | Completed | 2016 | 2017 |
| 20170460 | Comparison between EQ-5D-3L-Y and EQ-5D-5L-Y in a patient population in Hong Kong | This study was design to compare five-level (EQ-5D-5L-Y) and three-level EQ-5D-Y questionnaires in a pediatric patient population in juvenile (JIS) or adolescent idiopathic scoliosis (AIS) in Hong Kong. A consecutive sample of idiopathic scoliosis patients aged 8–17 years were recruited from a referral outpatient scoliosis center at Hong Kong, China in October 2017 and completed the two versions of EQ-5D-Y. After obtaining informed consent, eligible patients were asked to complete the 5LY and 3LY questionnaires, EQ-VAS and answer the questions about their socio-demographic and clinical characteristics. All respondents completed 5LY first followed by 3LY. Test-retest reliability and responsiveness were assessed by asking patients to complete the questionnaires at 1-2 weeks and 3-9 months again through telephone interview after baseline survey. The feasibility of 3LY and 5LY for use in Hong Kong children and adolescents has been assessed, and their redistribution properties, informativity and psychometric properties have been compared. | Nan Luo | Descriptive Systems, Youth | 1850 | Completed | 2017 | 2018 |
| 20170170 | Deriving Social Values for the EQ-5D 5L in Peru implementing a “Lite” protocol | The main deliverablesplanned were: a draft of preliminary results and a draft of report/paper to be shared with the EuroQol team, that was accepted and going to be presented at the Brussels plenary; technical report published with the peruvianauthorities with the study details, analysis, results, and the peruvian eq-5d-3l value sets.We aimed to deliver at least 2 papers to be published in an international peer reviewed journal: a) one about the valuation set using the lite protocol and hybridmodelling (to be undertaken in the near future)b) about the comparison of the DCEvariants. A collaboration was done with Australian and Danish team and another paper sent to the plenary lead by Alice Yu about the DCE triplet comparison. After the revision of the project, and resubmission, the teaching-distance learning material was not planned nor produced. | Federico Augustovski | Valuation | 39700 | Completed | 2017 | 2018 |
| 20170540 | Validity and Reliability testing of the EQ-5D-Y Proxy version 1 in young children. | One of the key foci of the World Health Organisation (WHO) and its member states is the improvement of child health globally (1)(2). As a result there has been an increase in measures to monitor child health, including Health Related Quality of Life (HRQoL) in children and adolescents has increased overthe last two decades (3).HRQoL measures aim to capture the subjective multi-dimensional constructs of HRQoL namely physical, social and psychological functioning which are relevant to health (4,5). By definition, an individual’s HRQoL is subjective and should be elicited by self-report whenever possible, even from children (6). This is not always possibly as there are those who are either too young or cognitively unaware to self-report and so it is necessary to rely onproxy report (6–12). Olderchildren can provide reliable and valid responses to measures like the EQ-5D-Y (13), Paediatric Quality of Life Measure (PedsQL) (14–16), Kidscreen (17–19), KINDL and Kiddy-KINDL (20). However, for younger children below the age of 7-8 years it is necessary to rely on proxy report. The EQ-5D-Y was developed and validated for children and adolescents aged 8-18 years by an international team under the EuroQol group (13,21–24). The youth version of the instrument was derived from the EQ-5D-3L, an adult HRQoL instrument. The primary use of the EQ-5D is to support the estimation of quality adjusted life years (QALYs) for economic evaluation. In recent years a large number of treatments have been developed for paediatric conditions which has increased the need for a child specific version of the EQ-5D, with an associated economic tariff. The EQ-5D-Y, like the adult version, includesfive dimensions but hasage appropriate descriptions.The EQ-5D-Y Proxy is a direct adaptation of the EQ-5D-Y for proxy completionand is currently recommended by the EuroQoL Foundation for use in children aged 4-8 years (25).Proxy version 1requires the respondent to rate the child’s health as the proxy perceives it to be. Proxy version 1 hasbeen validated in a Spanish study in children over six years of age (26)and the performance hasbeen examined in a few studies with children older than six years (27,28). Scalone et al (2011) tested the EQ-5D-Y proxy for suitability of the domains (from the child’s perspective) on ill children and healthy childrenattending kindergarten or school from age 4-11years (29). The authors concluded thatthe domains on the current EQ-5D-Y proxy self-careand usual activities are not considered suitable for younger children between the ages of 4-5 (29). Verstraete andJelsma (2017) report that the EQ-5D-Y Proxy version was acceptable tocaregivers of ill and typically developing children and performs well in children aged four years and older,but was not appropriate for very young children(30). | Jennifer Jelsma | Youth | 24510 | Completed | 2018 | |
| 2016320 | New methods for analysing the distribution of EQ-5D observations in data sets | Background: EQ-5D profile data are often under-analysed, but can yield important insights into levels of and changes in patient and population health. One characteristic is the extent to which they cluster together in a small number of profiles or are dispersed evenly over many profiles. This can have implications for interpreting statistical analysis of the corresponding EQ values (Index)data, and for clinical management of patients.Aims:This paper aims to develop methods for describing observed distributionsof EQ-5D profiles and to explore the properties of the new methods compared with existing ones (e.g. Shannon’s Index). We investigate the methods using both real, from the EnglishNHS, and simulated EQ-5D data, and show how they can be used to generate new insights into, for example, the differences between the three-and five-levelversions of the EQ-5D with respect tohow profile data are clustered. Methods: We report three methods we have developed to characterise and summarise the distribution of health states in patient reported outcome (PRO) data within a sample or population of patients: the Health State Density Index(HSDI), Health State Density Curve(HSDC)and estimated Power Law functions (PLFs).We compare these andexisting methods from information theory (e.g. Shannon’s Index), in examining the distribution of EQ-5D health profilesin three data sets:across three groups of patients in Cambridgeshire Community Services NHS’s electronic patient records for the EQ-5D-5L; the Health Survey for England 2014 for the EQ-5D-3L; andthe NHS PROMs programme for theEQ-5D-3L. The properties of the various methods are further examined using simulated data sets. Results:Each method has different properties and will give different insights into patients’ data. For example, the Shannon index (absolute and relative) is not sensitive to random variations but decreases slowly with “rare health states”. The HSDI decreases slowly with random variations and is strongly affected by “rare” health states with largedecreases towards zero (total inequality).Conclusions:These methods can be used by researchers to better understand the characteristics of EQ-5D profile data. They can also be used by clinicians to understand the degree to which their patients’ needs are homogeneous or characterised by distinct sub-groups, with implications for treatment planning. Finally, the methods can also be used as a way of comparing differences between instruments, such as the 3L and 5L, in measuring health. Acknowledgements and disclaimersThis project was funded by a research grant from the EuroQol Research Foundation. All views expressed are those of the authors, and not necessarily those of the EuroQol Research Foundation.The authors are grateful to Nils Gutacker, Thomas Kohlmann,and participants at the Health Economists’Study Group (HESG) Winter Meeting (Birmingham 2017)and the 34thEuroQol Plenary (Barcelona 2017), and to Nigel Rice, for helpful comments onearlier versionsof this paper. | Nancy Devlin | Descriptive Systems, Populations and Health Systems | 34500 | Completed | 2016 | 2017 |
| 20170210 | Testing the impact of potential bolt-ons on preferences using pairwise choices: A pilot study. | Background:It is accepted that the EQ-5D may miss dimensions relevant for some conditions. Whenthis happens, a possible solution is adding bolt-ons to expand its descriptive system. A recent study has identified eight candidate bolt-ons for the EQ-5D-5L: relationships, hearing, life satisfaction, speech, cognition, vision, energy/vitality and sleep (Finch et al., 2016). Developing and incorporating bolt-ons into EQ-5D values sets is complex and costly, so it is important to establish which ones are likely to impact on preferences. This study teststhe use of pairwise choices for the selection of bolt-on dimensions by examininghow bolt-ons alter public preferences for the EQ-5D-5L health states. Methods:Preferences of the general population were collected using an online survey of 1040 UK residents. The survey presented participants with pairwise choices of EQ-5D-5L health states without and with bolt-ons of hearing, sleeping, cognition, energy and relationships. Three health state pairs were chosen among those where responders’ preferences were in approximately equal proportions in the discrete choice experiment of the EQ-5D-5L value set for England study (Devlin et al., 2016). Participants were asked to imagine living in those health states for 10 years and then die, and to choose their preferred state. To assess whether bolt-ons changed preferencesstatistical testing of differences in proportions of responses between the pairwise choices without bolt-ons and the corresponding pairwise choices with the bolt-ons wasperformed using Z tests. Todiscriminate and help inform the selection between bolt-ons, differences in the proportions of preferences between bolt-on at the same level for the same health state pairs were tested using Z tests.Results:Each of the individual bolt-ons had a significant impact on preferences for the EQ-5D-5L. The extent of this impact varied according to the bolt-ons and their severity level, as well as the health states to which they were added. Additions of bolt-ons at level 1 generally resulted in differences of ± 10 percentage pointscompared to the same pairwise choice without bolt-ons. These were not statistically significant. Additions of bolt-ons at level 3 generally produced a statistically significant reduction in the percentage ofindividuals choosing the health state to which the moderate level was added. Addition of bolt-ons at level 5 produced a further reduction. At level 5 hearing had the largest impact, followed by energy, cognition and relationships with similar impacts, andsleeping with the smallest impact. By contrast, at severity level 3 cognition producedthe largest switch in preferences, followed by hearing, relationships and sleep, with energy registering the smallest switch. Conclusions:Use ofsimple pairwise comparisons of health states is a feasible technique toassess the potential importance of bolt-ons. However, the relative weight responders place on different health problems is not constant across levels of severity between bolt-ons. | A Finch | Descriptive Systems, Valuation | 9313 | Completed | 2017 | |
| 2015060 | EuroQol past, present & future publication | Nancy Devlin | Education and Outreach | 13500 | Completed | 2015 | ||
| 2015380 | Alberta EQ-5D end-user conference and APERSU Scientific Advisory Committee meeting fall 2015 | The planned event is intended to start with the end-user conference that would last for one and half days. After that conference, there would be a SAC meeting that would last the afternoon of the second day. That arrangement would allow SAC members to participate in the meeting, and discuss with the end-users prior to making the decisions about the research directions of APERSU. This arrangement would also allow key EuroQol representatives to participate in the end-user meeting, serve as experts in the various discussions, and also look forward for potential collaboration projects with Alberta research teams. The initial agenda for the meeting is attached (Appendix A). The end-user meeting is intended to be for about 50 people, including APERSU staff and leadership, HQCA and AHS representatives in the initiative and people they invite internally, Alberta Health (ministry) representatives, primary health care and strategic clinical networks representatives, and key provincial PROMs researchers at the University of Alberta and University of Calgary. Briefing of the end-user meeting would be made available at the APERSU website. The aim of the SAC meeting is to discuss the research agenda of the APERSU and thus the first version of the APERSU research agenda for the coming years will be the second outcome of the meeting. | Arto Ohinmaa | Education and Outreach | 15000 | Completed | 2015 | |
| 2013070 | Deriving social values using the EQ-5D-5L in the general population of Uruguay. | The results of this study have been published here: Augustovski F, Rey-Ares L, Irazola V, Garay OU, Gianneo O, Fernández G, Morales M, Gibbons L, Ramos-Goñi JM. An EQ-5D-5L value set based on Uruguayan population preferences. Qual Life Res. 2016 Feb;25(2):323-333. doi: 10.1007/s11136-015-1086-4. Epub 2015 Aug 5. Erratum in: Qual Life Res. 2016 Feb;25(2):335. PMID: 26242249. | Federico Augustovski | Valuation | 50796 | Completed | 2013 | |
| 2013050 | Assessing test-retest reliability of the EuroQol Group Valuation Technology in valuing the EQ-5D-5L | not available yet | Feng Xie | Valuation | 69332 | Completed | 2013 | 2013 |
| 2015400 | Development of EQ-5D-Y-3L norms data based on a general population sample of children and adolescents in Sweden | not available | Mimmi Åström | Youth | 29950 | Completed | 2015 | 2016 |
| 2014100 | Two EQ workshops at ISPOR Asia | Nan Luo | Education and Outreach | 8720 | Completed | 2014 | ||
| 2016070 | EuroQol workshops back-to-back with ISPOR 7th Asia-Pacific Conference in Singapore on September 3, 2016 | One full-day regional meeting on September 3, 2016 (including a morning session for EQ-5D users in Asia and an afternoon by-invitation session for policy makers and HTA practitioners in Asia) | Nan Luo | Education and Outreach | 70926 | Completed | 2016 | 2016 |
| 2015020 | Valuation of the EQ-5D-5L+R | The responsiveness of the EQ-5D-3L to patient-level changes over time in respiratory diseases likeasthma and COPD appears limited.Therefore we exploredthe potential of adding a respiratory dimension to the current EQ-5D descriptive system, i.e. a bolt-on dimension.Aim of the study was to develop a respiratory bolt-on for the EQ-5D-5L and assess the impact of the developed respiratory bolt-on on EQ-5D-5L health state valuations and the explanatory power of the EQ-5D-5L. The first part of the study, described in this report, aimedto explore the impact of different respiratory items on the explanation of the EQ-5D VAS scores and to develop a respiratory bolt-on for the EQ-5D-5L. To identify which of the respiratory complaints of asthma and COPD patients was the most promising candidate for a bolt-on three different routes were followed. Firstly, a content review of the EQ-5D and six disease-specific health-related quality of life measures for asthma and COPD was performed. Disease-specific questionnaires included in this content review were the asthma quality of life questionnaire (AQLQ), the asthma control questionnaire (ACQ), the St. Georges Respiratory Questionnaire (SGRQ), the COPD Assessment Test (CAT), the Clinical COPD Questionnaire (CCQ), and the mMRC dyspnea scale. Secondly, a post-hoc analysis of data from three clinical studies in which both EQ-5D and disease-specific quality of life were measured was done. Multivariate regression analyses were performed to investigate how much the proportion of variance in EQ-5D VAS scores that is explained (i.e. the R2) increased when we added respiratory items of the different disease-specific questionnaires tothe EQ-5D dimension scores. Thirdly, a principal component analysis was performed for the disease-specific health-related quality of life questionnaires in combination with the EQ-5D to investigate which items from the questionnaires form different constructs apart from the EQ 5D domains.Results for the content review showed that all disease-specific questionnaires include questions about the impact of asthma/breathlessness on physical activities. The EQ-5D includes a question about the impact on physicalactivities in terms of the impact on mobility. Five of the disease-specific questionnaires address asthma or COPD-specific symptoms, while the EQ-5D addresses symptoms more broadly in terms of pain/discomfort. Impact on functioning was included in four disease-specific questionnaires as well as the EQ-5D. Domains that were included in several disease-specific questionnaires, but not in the EQ-5D, were impact on sleep and use of medication. The post-hoc regression analyses showed that in four out of five questionnaires, the ACQ, AQLQ, CCQ and MRC, questions about the impact of asthma/shortness of breath on physical activities were found to explain the highest additional R2. For the SGRQ items about the problems the chest condition causes had the highest additional R2. Results of the PCA showed that for multiple questionnaires separate constructs were found on which none of the EQ-5D items loaded. These constructs either related to symptoms or impact of breathlessness on activities. Based on the combined results of the post-hoc regression analyses and the PCA we concluded that symptoms and the impact of shortness of breath on physical activities were the two most appropriate items/domains for inclusion in the respiratory bolt-on.Several possible formulations of the new respiratory bolt-onwere tested for clarity, comprehensiveness and relevance in five asthma patients, six COPD patientsand five non-patients. Based on these interviews we concluded that patients and non-patients considered a question on the impact of shortness of breath on their ability to do physical activities highly relevant and important. However, they think that the added value to the existing questions of the EQ-5D is limited. A question about symptoms is regarded of less importance, but is considered to have no overlap with the existing questions of the EQ-5D. Based on these findings we decided to include both candidate respiratory bolt-ons in the valuation study to see which of the two has the most impact on the valuation. | Maureen Rutten-van Molken | Valuation | 0 | Completed | 2015 | |
| 2012030 | EQ-5D-5L valuation study in Hong Kong | A report of the study is available here: Wong ELY, Ramos-Goñi JM, Cheung AWL, Wong AYK, Rivero-Arias O. Assessing the Use of a Feedback Module to Model EQ-5D-5L Health States Values in Hong Kong. Patient. 2018 Apr;11(2):235-247. doi: 10.1007/s40271-017-0278-0. PMID: 29019161; PMCID: PMC5845074. | Carlos Wong | Valuation | 0 | Completed | 2012 | |
| 2013210 | HTA and quality of life measurement in patients | Valentina Prevolnik Rupel | Others | 0 | Completed | 2013 | ||
| 2016421 | The follow up meeting with Indonesian Ministry of Health and HTA Committee: EQ-5D inHTA and non-HTA research and the EQ-5D-5L value set | This year in the value set of the Indonesia 5 level version of the EQ-5D will be published in scientific journal. We will also publish the population norm scores. Thearrival of the Indonesia 5 level value set and norm scores comes timely, as Indonesia has started in 2014 a societalhealth insurance system, and (cost-)effectiveness is determined as one of the leading principles for reimbursement. In September 2016, we organized a symposium to introduce this value set to the stakeholders. Policy makers from Ministry of Health(MoH), National Health Insurance, and Indonesian Food and Drug Administration were present together with researchers from various universities in Indonesia. In collaboration with The Center of Health Financing and Security (Pusat Pembiayaan dan Jaminan Kesehatan/PPJK) MoH, we manage to secure a follow up meeting with the Indonesian HTA committee and higher level officials of MoH in Jakartain March 2017. The aimsof thisfollow up meeting areto promote EQ-5D-5L as recommended tool in the Indonesian HTA guideline and to introduce EQ-5D usefulness in theHTA and non-HTA research. | Jan Busschbach | Others | 0 | Completed | 2017 | |
| 142-RA | Performance of the EQ-5D-Y Interviewer Administered Version in young children aged 5-8 years | Background: The standard EQ-5D-Y-3L has been used since it’s development in 2010 to measure health in the general population and in clinical samples in South Africa [1]–[4]. As Health Related Quality of Life (HRQoL) is subjective it is recommended that self-report is collected as far as possible [5]. Currently, the EQ-5D-Y self-complete is recommended for children aged 7-8 years. It is however suggested that children as young as five years may be able to reliably report on their HRQoL [5]. The aim of this study is to investigate whether children aged 5-8 years can self-report on their HRQoL using the newly developed EQ-5D-Y-3L interviewer administered (IA) version. Aim: The aim of the research study is to determine the validity, reliability and feasibility of the EQ-5D-Y-3L IA in children between 5-8 years compared to children aged 8-10 years. The secondary aim is to establish the performance of the IA version compared to the self-complete version in children aged 8-10 years. Methods: Participants will include children aged 5-10 years with a functional disability, receiving Orthopaedic intervention, chronic respiratory illness and General Population. Children will be asked to complete the EQ-5D-Y IA, Mood and Feelings Questionnaire and the Faces Pain Scale. Their physical functioning will be scored on the WeeFIM. Test-retest reliability will be established with a second completion of the EQ-5D-Y two days later. Feasibility will be established through, time taken to complete the measure and perceived difficulty in answering the EQ-5D-Y. | Janine Verstraete | Youth | 38392 | Completed | 2020 | |
| 2015220 | The effect of chronic conditions on valuation of EQ?5D?5L health states | Objectives: To compare the utility values of the 5-level EuroQoL-5Dimension (EQ-5D-5L) health states elicited from heart disease patients, cancer patients, and members of the general public.Methods: In a face-to-face interview, each participant was asked to value 10 EQ-5D-5L health states using acomposite Time Trade-Off method. Utility values between the two patient groups and the general public group were compared using ordinary least-square regression models. Results: 157 heart disease patients, 169 cancer patients, and 169 members of general public were included in the analysis. Pooling utility values for all health states, heart disease patients and cancer patients had mean utility values lower by 0.11 points (P-value=0.014) and 0.06 points (P-value=0.148), respectively, compared to the general population. After taking into account demographic and socioeconomic characteristics, differences in health state utility values between the patient populations and the general population were not statistically significant, except that heart disease patients gave higher utility values (mean difference=0.08; P-value=0.007) to mild health states than the general population. Gain in utility values defined as utility value of a better health state minus that of a poorer health state was higher according to utility values derived from heart disease patients compared to the general population, with and without adjustment of demographic and socioeconomic characteristics.Conclusions: No simple patterns exist in health state utility values elicited from patients and the general population.Using utility values derived from the general population may under-estimate the comparative effectiveness and cost-effectiveness of treatments or interventions for certain type of disease. | Nan Luo | Valuation | 22950 | Completed | 2015 | |
| 2015190 | No kidding: the validity of discrete choice experiments in children - a pilot study | Objective: To assess the feasibility and validity of using adiscrete choice experiment format to elicit health preferences in children by comparing illogical choices and choice blindness rates between adults and children; and toexplore the relationship between personality traitsand health-state choices.Methods: A convenience sample of adults and children (8-17 years old) were recruited aroundChicago, USA. Apersonality inventorywas administered,followed by pairwise comparisons of6health-state scenarios. Health statedescriptionswere based ona simplified 3 dimension version of EQ-5D (mobility, pain, depression, each with 3 levels). For 2 scenarios, theinterviewer switchedthe respondent’s preferred choiceto identify choice blindness. Odds of choice blindnessand health-state choice among pairswas assessed using logistic regression.Results: One-hundred and onerespondents were recruited (44% adults). Comparing children to adults, there was no significant difference in the rate of illogical preferences, i.e. selecting a dominated state, (9% vs. 12%) or in preferring dead to the worst health-state (54% vs. 64%) (p>0.05). Choice blindness rates were significantly higherin children (35%) thanadults (9%) (p<0.01). Adjusting for gender and personality traits, the odds of choice blindness in children was 6.6(CI 95%: 1.8-23.8, p=0.004). Conscientiousness was significantly associated with health-state choice in 3 of the 6 models predicting health state choice (using p<0.1as a threshold).Conclusions: The results of this exploratory study suggest it is feasible to conduct choice experimentsin children; however, children are significantly more likely to demonstrate choice blindness.Psychological traits may be noteworthy predictors of health-state choices, withConscientiousness independently associated with severalhealth-state choices. | Simon Pickard | Youth | 13500 | Completed | 2015 | |
| 2015170 | Monitoring neurotrauma patient outcomes in Bandung, Indonesia: A feasibility study | Introduction: Almost a quarter of Indonesia's 250 million citizens live in Western Java. The Dr. Hasan Sadikin Hospital (RSHS), in Bandung City, is a major referral hospital for the region. RSHS Neurosurgery Unit admits patients following major trauma or other neurological conditions. Little is currently known about neurosurgery patient outcomes in Indonesia, particularly regarding factors preceding admission and following discharge. Prior to our study, patients were often discharged with limited follow-up. Our study sought to describe the characteristics of patients admitted to, and discharged from, the Neurosurgery Unit and to assess the feasibility of undertaking follow-up telephone interviews post-discharge. Of 184 consenting patients, 46% were admitted because of trauma/injury, 37% brain tumour, 9% sudden health event (mostly cerebrovascular accident), and 8% other conditions. The majority had a mild (77%) or moderate (20%) GCS on admission; mean age was 41 years. Trauma patients spent an average of 8 days in hospital; non-trauma patients 21 days. Most (97%) were discharged back to their pre-admission residence. Despite the majority (88%) living more than one hour away from RSHS, 83% were able to attend a clinical follow-up appointment. Clinicians reported that the process of undertaking this study, and obtaining patients' contact details, enabled a much higher follow-up appointment rate than had previously occurred. By the time of the one-month interview: five patients had not reached the scheduled follow-up date, six had died, six were uncontactable; 154 completed an interview. Of these, a high proportion reported extreme problems pre-discharge for the dimensions of mobility (21%), self-care (23%), and usual activities (38%). Proportions had reduced by one-month, but were still high (12%, 12% and 18% respectively). Most reported no or slight problems with pain/discomfort and anxiety/depression at both time points (85% - 95% and 96% - 97% respectively). Conclusion: This study has shown it is feasible to follow neurosurgery patients by telephone one month after hospital discharge. A high proportion of patients still reported difficulties with mobility, self-care and usual activities. Data collected at the remaining two and three-month interviews will continue to provide valuable infonnation about both longer-tenn outcomes and feasibility of follow-up. Methods: Eligible patients were aged .!:18 years, admitted to RSHS Neurosurgery Unit (19/10/2015 - 17/02/2016), and subsequently discharged. Baseline data was collected on admission from clinical notes by registered nurses. An in-person interview (conducted in the Indonesian language) was held 1-2 days pre discharge; follow-up telephone interviews were scheduled for one, two and three months post-discharge. Socio-demographic and clinical characteristics, health pathways, Glasgow Coma Scale (GCS), and EQ-5D- 5L data were collected. Data were recorded on a patient case report form and entered into an electronic database. Statistical analyses included proportions for categorical data, means for normally distributed data, and a student t-test for comparison of means. Results: There were 217 patients admitted to the Neurosurgery Unit during the recruitment period; 33 died before discharge. All surviving patients (n=184) consented to participate but four were discharged prior to an interview being arranged and nine were still in hospital, therefore 171 (93%) completed a pre-discharge interview. | Sarah Derrett | Populations and Health Systems | 54157 | Completed | 2015 | |
| 2015160 | Relationship between behavioural risk factors for poor health and the EQ-5D: Prospective analyses in a New Zealand cohort | Introduction: Physical inactivity, tobacco smoking, high body mass index and hazardous alcohol consumption are risk factors for poor health. However, their relationship with the EQ-5D, a commonly used measure of general health status, is poorly understood. This study examines the relationship between these factors, both individually and in combination, with the EQ-5D-3L. Methods: Data from the Prospective Outcomes of Injury Study (n=2856) was analysed using multi-variable logistic regression modelling to examine pre-injury relationships between physical activity, tobacco smoking, body mass index and alcohol consumption and each of the five EQ-5D dimensions. Logistic regression modelling was also used to calculate the predicted probability of problems within each of the EQ-5D dimensions for each possible combination of the four behavioural risk factors (i.e. 16 possible combinations were examined for each of the five dimensions). Graphs were produced to show the 16 combinations of risk factors with each of the dimensions. This appears to be a novel approach in terms of presenting EQ-5D findings. Results: Physical inactivity was associated with being more likely to have problems with mobility. Tobacco smoking was associated with being less likely to have problems with pain or discomfort whereas high alcohol consumption was associated with being more likely to have problems with pain or discomfort. Body mass index was not associated with any of the EQ-5D dimensions. However, the combination of obesity and physical inactivity (with or without the other behavioural risk factors) corresponded to a larger probability of problems in almost all dimensions. Conclusions: Our results support earlier findings that large scale population studies should consider collecting information about key behavioural factors alongside EQ-5D health outcomes. It also appears useful to consider specific combinations of behavioural risk factors when assessing general health status using the EQ-5D. | Helen Harcombe | Populations and Health Systems | 14905 | Completed | 2015 | |
| 2015150 | Values for severe states: a methodological and cultural view | Introduction: Scaling severe states can be a difficult task. First, the method of measurement affects whether a health state is considered better or worse than dead. Second, in discrete choice experiments, different models to anchor health states on 0 (dead) and 1 (perfect health) produce varying amounts of health states worse than dead. Research question: Within the context of the QALY model, this paper provides insight into the value assigned to dead and its consequences for decision making. Our research questions are: 1) What are the arguments set forth to assign dead the number 0 on the health-utility scale? 2) What are the effects of the position of dead on the health-utility scale on decision making? Methods: A literature review was conducted to explore the arguments set forth to assign dead a value of 0 in the QALY model. In addition, scale properties and transformations were considered. Results:The review uncovered several practical and theoretical considerations for setting dead at 0. In the QALY model, indifference between two health episodes is not preserved under changes of the origin of the duration scale. Ratio scale properties are needed for the duration scale to preserve indifferences. In combination with preferences and zero conditions for duration and health, it follows that dead should have a value of 0. Conclusions: The health-utility and the duration scale have ratio scale properties and that dead should be assigned the number zero. Furthermore, the position of dead should be carefully established, as it determines how life saving and life improving values are weighed in cost-utility analysis. | Peep Stalmeier | Valuation | 251305 | Completed | 2015 | |
| 2015140 | Valuation of the EQ-5D in countries with limited research resources: investigating the potential of shrinkage analysis | Introduction Resource-constrained countries have difficulty conducting large EQ-5D valuation studies, which limits their ability to conduct cost-utility analyses using a value set specific to their own population. When estimates of similar but related parameters are available, shrinkage estimators reduce uncertainty and yield estimators with smaller mean square error (MSE). We hypothesize that health utilities based on shrinkage estimators can reduce MSE and mean absolute error (MAE) when compared to country-specific health utilities. MethodsWe conducted a simulation study (1000 iterations) based on the observed means and standard deviations (or standard errors) of the EQ-5D-3L valuation studies from 14 counties. In each iteration, the simulated data was fitted with the model based on the country-specific functional form of the scoring algorithm to create country-specific health utilities (“naïve” estimators). Shrinkage estimators were calculated based on the empirical Bayes estimation methods. The performance of shrinkage estimators was compared with those of the naïve estimators over a range of different sample sizes based on MSE, MAE, mean bias, standard errors and the width of confidence intervals.ResultsThe MSE of the shrinkage estimators was smaller than the MSE of the naïve estimators on average as theoretically predicted. Importantly, the MAE of the shrinkage estimators was also smaller than the MAE of the naïve estimators on average. In addition, the reduction in MSE with the use of shrinkage estimators did not substantially increase bias. The degree of reduction in uncertainty by shrinkage estimators is most apparent in valuation studies with small sample size.Conclusion Health utilities derived from shrinkage estimation allow valuation studies with small sample size to “borrow strength” from other valuation studies to reduce uncertainty. | Eleanor Pullenayegum | Valuation | 21300 | Completed | 2015 | |
| 2015070 | Comparing the predictive accuracy of different main-effects regression models on left-out EQ-5D-5L health states: 20-parameter additive model vs. 8, 9, and 11 parameter multiplicative models. | BackgroundThe conventional method for modeling of EQ-5D-5L health state values in national valuation studies is an additive20-parameter main-effect regression model. Statistical models with many parameters are at increased risk of overfitting; fitting to noise and measurement error, rather than the underlying relationship. ObjectiveTo compare the 20-parameter main-effect model to simplified,non-linear,multiplicative regression models in terms of how accurately they predict mean values of out-of-sample health states.MethodsWe used data from the Spanish, Singaporean, and Chinese EQ-5D-5L valuation studies. Four models were compared: an 8-parameter model with single parameters per dimension, multiplied by cross-dimensional parameters for levels 2, 3, and 4; 9 and 11-parameter extensions with handling of differences in the wording of level 5;and the“standard” additive 20-parameter model. Fixed and random intercept variants of all models were tested using two cross-validation methods: leave-one-out at the level of valued health states, andof health state blocks used in EQ-5D-5L valuation studies. Mean absolute error, Lin’s Concordance Correlation Coefficient, and Pearson’s R between observed health state means and out-of-sample predictionswere compared.ResultsPredictive accuracy was generally bestusing random intercepts.The 8, 9, and 11-parameter modelsoutperformed the 20-parameter model in predictingout-of-sample health states.Discussion and conclusionSimplified non-linear regression models look promising, and should be investigated further using other EQ-5D-5L datasets.To avoid overfitting, cross-validation is recommended in model selection in future EQ-5D valuation studies. | Kim Rand | Valuation | 8500 | Completed | 2015 | |
| 2015130 | Evaluating consistency between DCE and TTO valuations using multivariate mixed models and multivariate latent class analysis | Background: In health economics there has been interest in using discrete choice experiments (DCEs) to derive preferences for health states in lieu of previously established approaches like time trade-off (TTO). We examined whether preferences elicited through DCEs correlate and agree with preferences elicited through TTO tasks. Methods: We used data from 1073 respondents to the Canadian EQ-5D-5L valuation study. Multivariate mixed effects models specified a common likelihood for the TTO and discrete choice data, with s eparate but correlated random effects for the TTO and DCE data, for each of the five EQ-5D-5L dimensions. Multivariate latent class models allowed separate but correlated latent classes for the DCE and TTO data. Results: Correlation between the random effects for the two tasks ranged from 0.17 for usual activities to 0.57 for anxiety and depression, reaching statistical significance for all dimensions except usual activities. Latent classes for the TTO and DCE data both featured one latent class capturing participants attaching large disutilities to pain/discomfort, another capturing participants attaching large disutility to anxiety/depression, and the third class capturing the remainder. Agreement in class membership was poor (kappa coefficient: 0.081; 95% Credible Interval 0.033 to 0.13). Fewer respondents expressed strong disutilities for problems with anxiety/depression or pain/discomfort in the TTO than the DCE data (17% vs. 55%, respectively).Conclusions: Stated preferences using TTO and DCEs show reasonably strong association across dimensions, but poor agreement at the level of individual health states within respondents. J oint models that assume agreement between DCE and TTO have been used to develop national value sets for the EQ-5D-5L. This work indicates that when combining data from both techniques, methods requiring association but not agreement are needed. | Eleanor Pullenayegum | Valuation | 21650 | Completed | 2015 | |
| 2013260 | Project Save TTO valuations | not available | Alexander Arons | Valuation | 10000 | Completed | 2013 | |
| 20180600 | Initial psychometric testing of E-QALY and 3L-5L comparison in China | Interim report with flagged problematic items to contribute to a collective international judgement on item selection. Final report delivered to EuroQol group. One paper about the 3L and 5L comparison submitted to an EuroQol Plenary meeting and an international peer-reviewed journal for publication | Nan Luo | Descriptive Systems, EQ-HWB | 26400 | Completed | 2018 | |
| 2013140 | A Japanese valuation study for the EQ-5D-5L | This survey was conducted as a s upplemental analy sis of "A Japanese valuati on study for the EQ-5D-5L (project number 2013140)"， to assess the impact of implementing汁anking"process in to EQ-VT software . Then， in dependent study proposal for this research was not developed. For information purpose， study proposal of project number 2013140 was attached as appendix 1， "Appendix I original Research proposal.pdf'. | Shunya Ikeda | Valuation | 73500 | Completed | 2013 | |
| 2013200 | Extension of the labels within the EQ-5D-Y | The objectiveof this study is to extent the labels within the EQ-5D-Y and thereforeto develop a four-ora five-level version of the EQ-5D-Y. The study aims to identify appropriate level labels for a revised EQ-5D-Y version withfour or five levels within each dimensionand to test the alternative versions concerning their comprehensibility and feasibility to get the finally resulting new EQ-5D-Y.UK, Germany, Spain, Italy, Sweden and China will take part in the study. During the first phase of the study, in each country a sample of 60 children and adolescents aged 8-15 from the general population of school children is needed. Within the second phaseof the study, a sample of30 children and adolescents aged 8-15(15 healthy childrenand15 children under treatment for a health condition)has to be recruited in each country.Firstly,a pool of possible labels has to be developedby a literature review. Theidentified labels will be tested and rated by conducting face-to-face interviews. By using response scaling tasks,respondentswill be asked how theywould rate the severity of a label on a visual analog scale (VAS).In the second phase, the developed new versions of the EQ-5D-Y will be tested by cognitive interviews after self-completing the questionnaires.By analysing the results of the cognitive interviews it would be possible to decide about the final version of the new EQ-5D-Y which is comprehensible, acceptable and easy in its use. | Wolfgang Greiner | Youth | 135400 | Completed | 2013 | |
| 2014130 | Understanding the relationship between health behaviors, attitudes and perceptions of HRQL using the EQ-5D | Background: Strategies to improve public health may benefit from targeting specificlifestyles associated with poor health behaviors and outcomes. The aim of this studywas to characterize and examine the relationship between health and lifestyle-relatedattitudes (HLAs) and self-rated health and life-satisfaction.Methods: Secondary analyses were conducted on data from a 2012 communitywellness survey in Kirklees, UK. Using a validated HLA tool, respondents (n=9,130)were categorized into 5 segments: health conscious realists (33%), balancedcompensators (14%), live-for-todays (18%), hedonistic immortals (10%), andunconfident fatalists (25%). Multivariate regression was used to examine whetherHLAs could explain self-rated health (personal score) using the EQ-5D visual analogscale (EQ-VAS), the gap between personal and EQ-5D societal weighted score(societal score), and life-satisfaction. Health conscious realists served as the referencegroup.Results: Adjusted analyses found significant differences in the self-rating of health byHLA, with lowest mean EQ-VAS scores among unconfident fatalists (-9.0, 95% CI -9.9,-8.2) and live-for-todays (-2.0, 95%CI -2.8, -1.1). Unconfident fatalists had a largernegative difference between personal and societal scores (-0.027, 95% CI -0.017, -0.038), and were most likely to have low life-satisfaction (OR: 3.51, 95% CI 2.92, 4.23).Significance: Segmentation by HLA explains differences in self-rated health and life-satisfaction, with unconfident fatalists being a distinct segment with significantly worsehealth perceptions and life-satisfaction. In addition to informing conceptual frameworksof health, targeted health promotion efforts may benefit from considering the HLAsegment that predominates a patient group, especially unconfident fatalists, an areawhere further research is needed. | Simon Pickard | Valuation | 21000 | Completed | 2014 | |
| 2013170 | Further Exploration into using DCE for EQ5D-5L Valuations (FEDEV) | The EuroQol Group funded the PRET-AS project, which explored Discrete Choice Experiments with duration, or DCETTO, to value EQ-5D-5L states, using an on-line survey with 1800 respondents. Scenarios were based on EQ-5D-5L states combined with one of three levels of duration. This produced a logically consistent set of predicted values for the 3,125 EQ-5D-5L states. The proposed study, Further Exploration into using DCETTO for EQ5D-5L Valuations (FEDEV) is the natural next stage of DCETTO research in the EuroQol Group. FEDEV has three aims. First: to improve the duration attribute of the DCETTO design (objectives 1-2). Second: to examine alternative approaches to designing and modelling DCETTO data (objectives 3-4). Third: to use DCETTO as a vehicle to examine more general question related to EQ-5D-5L (objectives 5-8). Objective 1: Increase the proportion of choice sets where duration varies across the pairs. Objective 2: Increase the number of levels in the duration attribute. Objective 3: Explore strategies to incorporate non-zero priors in the design. Objective 4: Explore an alternative approach to the design based on states and matched duration.Objective 5: Examine the effect of varying the order of presenting EQ-5D dimensions. Objective 6: Examine the effect of splitting up the two composite EQ-5D dimensions. Objective 7: Examine the effect of bolting off one EQ-5D dimension at a time. Objective 8: Examine the incidence of choosing shorter over longer duration of a severe state FEVED will develop five DCETTO designs, conduct an on-line survey (n=4000), and analyse the data using econometric techniques. | Aki Tsuchiya | Valuation | 80145 | Completed | 2013 | |
| 2013180 | Transforming latent utilities to health utilities: Can one function fit other countries? | Discrete choice experiments(DCEs) area promising alternative to more resource intensive preference elicitation methodssuch as the time trade-off(TTO),as thesimplicity ofpairwise comparisons lends itself to online completion, which can save time and money. However, modelingDCE dataproduceslatent utilities which are on an unknown scale. Therefore, latent utilities need to be transformed before they can be usedin quality-adjusted life year calculations. Weaimed to explore transformationfunctionsfrom DCE-derived latent utilitiestoTTO-derived health utilities. We usedEQ-5D-5L valuation data from 8different countries that collectedboth DCE and TTO datausing astandardized protocol. Results foundless variation in the function that transformedlatent utilities to health utilitiesin the western countries than in the eastern countries. While a global transformation function is not recommended,results suggestregional transformationfunctionscould be potentially used to derivehealth utilities fromDCEdata. | Feng Xie | Valuation | 9950 | Completed | 2013 | |
| 20190490 | ISPOR Issue Panel on child health valuation | Title: Valuing health in children –where are we now, and what further work is needed?Issue: To facilitate the HTA of interventions for younger patients, utilities are needed that reflect the value of health in children and adolescents. However valuing health in children is challengingand raises questions about methodology, ethics and social values. For example: Which preference elicitation techniques should be used? Whose preferences should count (e.g. adults, parents, adolescents)? Under what perspective should those preferences be elicited (e.g. adults valuing health states for themselves or for a child)? Should we aimfor consistency between child and adult health valuation, in terms of both methods and values? Recent research has provided insights on some of these issues, but uncertainties and disagreements remain about the best way forward. Overview: In this issue panel, Koonal Shah will moderate and summarise emerging international research that addresses some of the key challenges. Elly Stolk will describe the development of the first international protocol for valuing the EQ-5D-Y, the youth version of the EQ-5D, and its recent application in Japan. This protocol combines time trade-off (TTO) and discrete-choice experiments to elicit adult preferences, but differs from the protocol for valuing the adult EQ-5D-5L. Donna Rowen will explain her concerns about the use of TTO in this setting and examine what alternative approaches are possible, focusing on how other measures such as CHU9D have been valued. She will also highlight current research gaps. Rosie Lovett will provide the perspective of an HTA agency exploring whether to issue guidance to companies about measuring and valuing child health. She will focus on questions about consistency and outline what further work would help agencies like NICE to make methodological recommendations. Following the brief presentations, 30 minutes will be reserved for panel and audience discussion, with questions and suggestions on how to reach consensus particularly welcomed. | Koonal Shah | Youth, Education and Outreach | 7600 | Completed | 2019 | 2019 |
| 2013150 | Non-additive impact of dimensions on the index values of health states: an analysis of interaction effects to avoid misspecification of the value function with unsaturated valuation datasets | Since it is common to include only a subset of health states (or health profiles) in any valuation study, statistical modelling is commonly applied to establish the effect of the health state on the elicited values. The resulting regression formula enables a value prediction for all health profiles, in terms of a predicted group mean, commonly called the value set or 'tariff'. The validity of this formula, essentially an extrapolation, depends on both features of the collected valuation data, and the statistical model used. The standard approach for obtaining VAS or TTO observations for this purpose has been the definition of a deliberate selection of health states. This selection has often been on average rather mild, that is rather healthy (e.g. the MVH set), and the subset rather small, with between 17 and 43 health states of 243 possible states being valued. The standard approach for modeling has been linear regression (not multilevel) with as main effects the descriptive variables of the health states. In case of the EQ-5D-3L these descriptive variables are represented by 10 dummy variables to cover the 5 trichotomized dimensions. Interaction models have also been used for several reasons, the most common interaction model defined by the so called N3 term. This standard approach is vulnerable for misspecification of the value function; past decisions on design and analysis were mainly a combination of theoretical reasoning and partial studies, with many issues undecided. These issues matter in view of extension of the system to EQ-5D-5L which requires the tariff to be re-estimated. To arrive at empirical evidence we subjected (1) two existing saturated EQ-5D-3L datasets and (2) simulated datasets (based on these observed data) to a systematic analysis. Our conclusions can be split into 3 parts: part 1 refers to the selection of health states, and their number, part 2 refers to the required number of responses per health state, an issue connected to inter- and intra-individual reliability, and part 3 refers to choices in the analysis of such incomplete datasets in particular if interaction terms are considered. A provisional conclusion on TTO (vs. VAS) is made, and the relevance for EQ-5D-5L is mentioned. Deliberate selection of health states, taking features into account of the assumed position of a health state on the 0-1 scale, or the composition of attributes such as the avoidance of complex or unlikely (‘stressed’) states, influences the probability of misspecification. This selection effect is strong, if the so called sampling ratio (the number of health states empirically valued divided by the number of all health states defined by the classification system) is equal or below 1:10. In general misspecification is difficult to catch in 1 quantitative measure: the performance in the upper part of the scale (the six states with at least four level 1s) dominates most measures. Here our judgments are, in model terms, non-linear and non-additive. Misspecification on average appears the least when severe and/or complex (‘stressed’) states dominate the selection of health states. When mild states dominate, then obviously the estimation benefits for the very best states, but these models perform, however, worse along the rest of the scale, which becomes clear with reasonably low sampling ratios (i.e. small subsets). Excluding the most upper part, misspecification is the least if so called stressed health states are overrepresented. In visual terms the fit is even much better. The MVH-selection represents a selection prone to more misspecification, since it is not only mild but also avoids stressed states. The sampling ratio of the health state is a critical feature for misspecification. In a case of >100 respondents per health state (hence little uncertainty on the mean), a sampling ratio of 1:10 or better (higher, say 1:8) is perhaps good enough (health states subject to the above selection criteria). Below 1:10 health state sampling, the bias of the health state selection criteria becomes stronger, like effects of low reliability. Lower sampling ratios than 1:10 are therefore hazardous. Any further conclusions on the sampling ratio depend on the reliability of the mean. So far we are not informed on inter-individual and intra-individual variation, which - with the number of respondents/observations per state - determines the reliability of the mean. If reliability is high, a limited number of observations per health state (say 10) suffices to obtain stable VAS means, but in practice 10 observations is not enough. This is even more so in TTO were reliability seems lower, and were lower values are a mix of values (and transformations) obtained by 2 different methods for better than dead and worse than dead. Returning to the sampling ratio in case of VAS values: if the number of respondents per health state inevitably is small, the number of health states cannot be small. And also, if the sampling ratio is low, interaction analysis is not advocated as it increases misspecification of the means of the health state values that were not part of the subset empirically valued, regardless of the source of the error. The interconnection between sampling ratio en reliability makes a simple conclusion on the minimal number of respondents hard to make. In TTO values and models, biases seem to have a stronger impact because models were quite distorted due to the lower end with negative values. Here the observations per health state should be even higher than in VAS models, and medians instead of means might be considered. Our modelling approach was simple in this regard; the effects of statistical or explanatory treatment of individual variation remains to be investigated (by multilevel analysis of modelling individual effects), as this might substantially decrease the confidence interval of the mean values as has been shown in similar datasets. In general terms interaction models (beyond main effect models) are likely to introduce misspecification, but one or two interaction terms may be conditionally profitable. The 1s and 3s interaction model was not particularly beneficial to improve model results above main effects models. The reason for the instable results are the irregularities in the interplay between domains along the 0-1 scale. The N3 model approach appears fairly accurate in large samples. Rather than that it changes lower state estimates, it generally rises the estimations of the better and best values. The better fit of the upper states compensates fit losses at the middle and lower end. In particular small sample models gained with the N3 interaction term, but on 1 occasion predictions with a small subset and N3 were wrong. In practice we do not known the truth, and in view of the other results the probability of such 'of the road' models which can not be recognized should not be underestimated. The driving force behind misspecification are the irregularities at the top of the scale (the jump of 11111 to the states with just one domain level changed say 12111). A lower sampling ratio (small subset) rapidly increases misspecification to unacceptable levels, in particular if means themselves are uncertain (e.g. with few observations per health state such as in the Australian design). This in turn increases interaction analysis risks. Therefore we regard main effects models superior (less risky) if sampling ratios are below 1: 10. Interaction strategies - if any - should be modest like N3. It seems useful to investigate in analytical strategies at the individual level to cope with the observed irregularities and to increase reliability of the (adjusted) means per health state. As said, TTO model results performed much less well compared to VAS, due to unreliable means and the effect of (large) negative values. Still most systematic observations were the same as in VAS. Also at the upper part and, to a lesser degree at the lower part of the scale misspecification follows the same pattern as in VAS. Considerable difference however existed in the lowest part of the scale. Our study showed that preference reversals (of parameter coefficients) and inconsistencies in terms of coefficients should be reinterpreted. These reversals surprisingly were design and analysis artefacts rather than 'wrong data'. As our data showed, the effect of an 'unlucky' choice of health states, low respondent numbers and/or of 'unlucky' data analysis (interaction term choices) may be provide utterly wrong models without internal options to check. Our pilot study provides warnings, and a methodological consistent strategy to find an optimal mix of design and analytical choices. Our study, however, did not provide a best strategy, not for EQ-5D-3L, nor for EQ-5D-5L. The following guidance for future studies may nevertheless be given. First of all the observed means must be stable. Whether is the case with 20, 30 or more observations per health state is to be established. We guess that below 30 respondents per health state the reliability of the observed mean easily becomes too low. Second, health state selections can be chosen selectively (mainly to improve the upper part of the scale), but a modelling strategy (to be developed) which would cover the upper jump/gap better with say 1 parameter might be favourable. For the remainder of the scale, overrepresentation of stressed states is better or, as we assume, a factorial design. Our study showed that there is no reason to avoid difficult, complex states. The removal of inconsistent respondents is of little effect. Finally additive main effects models are a robust and appropriate choice but modelling the individual effects seems an attractive complement. This pilot study is subject to limitations such as the datasets used, the valuation methods studied, the limited number of options in terms of health states choices, respondent numbers, and many regression features. We could not decide on one best parameter of misspecification, where new ones are proposed to cover the applicational requirements better. A final limitation is that at this stage little can be said on the bolt-on strategy. At this stage the most important lesson is that a sufficient number of health states and respondents is required, and interaction analysis should not be a first strategy. | Gouke Bonsel | Valuation | 26136 | Completed | 2013 | |
| 2016290 | A qualitative study to explore the interpretation and relevance of the EQ‐5D questionnaire in 4 Asian countries | A large body of literature has demonstrated the psychometric properties of the EQ-5D questionnaire in many different cultures. In contrast, qualitative evidence on the content validity of the instrument (i.e. relevance and adequacy of the health dimensions included in its descriptive system) is very limited especially in Asia. This project aims to explore the appropriateness of the EQ‐5D questionnaire for use in a number of Asian populations including Chinese, Japanese, Koreans, Malays, and Indians. First, we aim to ascertain the relevance and adequacy, or content validity,of the EQ‐5D descriptive system in the target populations. Second, we aim to understand the thought processes these Asian populations use to rate their own health with the EQ‐VAS. We propose to collect qualitative data from nationals of China, Japan, SouthKorea,and Singapore on their views on health and EQ‐5D.In each participating country,personal and/or focus‐group interviews will be conducted to elicit what the important health dimensions are and how important the EQ‐5D dimensions are to local people, and how they interpret the EQ‐VAS and make decisions in the process of evaluating their health with the scale.All interviews will be recorded, transcribed verbatim, and translated into English for thematic analysis. the analysis will focus on identifying participants’ opinions about theEQ‐5D as a measure of health status, with a particular focus on the content and the relevance and appropriateness of the dimensions,how the measure could be improved, what is missing, the cognitive processes participants use when completing the instrument. | Nan Luo | Descriptive Systems | 86519 | Completed | 2016 | |
| 2013130 | The Relationship between Time, Sequencing, and Precision: Considerations for Choice Experiments | Objective: This study estimatesthe effect of sequence on response precision and behaviorin health valuation studies.Methods: Time trade-off(TTO)and paired comparison responses from 6 health valuation studies—4 US, 1 Spanish, and 1 Dutch—were examined(22,225 respondents)to test whether task sequence influencesresponse precision(e.g., rounding),responsechanges and median response times.Each study used a computer-based instrumentthat randomized task sequence among a national sampleof adults, age 18 or older,from the general population.Results: For both TTO and paired comparisons, median response times decreasedwith sequence (i.e., learning), but tendedto flatten after the first 3 tasks. Although the paired comparison evidence demonstratedthat sequence hadno effect on response precision, the frequency of rounded TTO responses (to either 1-yearor 5-year units) increasedwith sequence. Conclusion: Based on these results, reducingthe numberor randomizing paired comparison tasksdoes not appear to influenceresponseprecision; however, generalizability, practicality,and precautionary considerations remain. Overall, participantslearnedto respondefficiently within the first 3tasksand didnot resort to satisficing, but may have roundedtheir TTO responses. | Benjamin Craig | Valuation | 24899 | Completed | 2013 | |
| 2016450 | The role of EQ-5D value sets based on patient preferences in the context of hospital choice in the national PROM programme in England | Background: The English NHS has been collecting EQ-5D data for all publicly-fundedpatients undergoing four types of elective surgery since April 2009. One of the intended aims ofthese data is to inform patients’ choice of hospital. To this end NHS Digital publishes hospitalperformance indicators reflecting the change in EQ-5D utility scores. These are calculated usingthe UK TTO general population value set.While the approach of using general population value sets is justified in many applications,for example when evaluating new technologies for adoption into collectively funded healthcaresystems, it appears indefensible when HRQoL data are used to inform individual patients’decisions about where to receive care. Instead the weights should reflect patients’ individualpreferences, or if this is infeasible a close approximation thereof based on samples of patientswith similar characteristics.Aims: This study explores whether using weights derived from previous patients instead ofgeneral population weights leads to a) different rankings of hospital providers and b) changes inproviders deemed positive or negative performance outliers; both of which might arguably affectprospective patients’ choice of hospital.Methods: We use EQ-5D health state data and EQ-VAS data from over 190,000 patientswho underwent hip and knee replacement surgery in England between April 2012 and March2015 to derive procedure-specific patient population tariffs. We test for i) internal consistency,ii) model fit and iii) predictive performance (root mean squared error) in an external sample ofpatients (April 2015 to March 2016). We apply these tariffs to the EQ-5D health state databefore and after surgery to calculate case-mix adjusted hospital performance estimates. Changesin hospital ranking are calculated for each patient for their five closest hospitals. Changes inoutlier status are calculated for all providers in England. We also test for patient heterogeneityin valuations using latent class modelling.Results: Patient population VAS tariffs assign lower decrements to pain & discomfort andhigher decrements to anxiety & depression than the UK general population TTO tariff. The preferred patient tariff structure differs across conditions but includes additional level 2 and 3interactions compared to the basic MVH-A1 specification. We find coefficient estimates to berelatively stable over time.Hospital rankings vary depending on the weights used and a smaller number of providersare identified as being positive outliers when patient weights rather than general populationvalues are used. Moreover, a significant proportion of patients has no well performing hospital(as identified by change in EQ-5D index score) in their local vicinity.Latent class analysis identifies up to four latent types of patients with significantly differentvalue functions. Group membership is associated with observable characteristics, such as age,gender, relative deprivation, and symptom duration.Conclusion: Patients may be better served with hospital performance estimates that reflecttheir own values and are therefore more relevant to their decisions. This finding has importantimplications for the national PROM programme in England. | Nils Gutacker | Populations and Health Systems | 25250 | Completed | 2016 | |
| 2016300 | Methods for development of a generic descriptive system | Background: Hundreds of standardised instruments have been developed to measure health-related quality of life and health status, with a range of approaches used in the development. The EuroQol Group are currently exploring the potential for developing a new descriptive system. A key part of the process of this development will require the selection of items for inclusion in the instrument. Various methods for item selection are available and the Group will need to decide which to adopt in the development of any future EQ instrument. The aim of this study was to provide a contemporary overview of methods recommended in guidelines for item selection in instrument development and methods used by instrument developers. Method:A focused review of key standards and guidelines was used to identify recommended methods and psychometric evaluations. A systematic review of the literature was conducted to identify the methods actually used in empirical studies reporting development processes of descriptive systems and any additional methods not included in the guidelines. The search was conducted using COSMIN’s precise search filter for measurement properties, restricted to include health related quality of life studies and focusing on development of descriptive systems, and a total of 553 abstracts were identified. Supplementary searches were conducted by reviewing bibliographies and citations of the included studies to identify complete set of articles on development of the descriptive system where possible.Results: A total ofeleven guidance documents were consulted and a data extraction template was created. A total of 61 full text articles were included. Item generation involved three approaches: developing items de novo, identifying items from several existing measures or using a single measure to derive a short form measure. Item selection was determined by the instrument developers in few cases, but most reported use of empirical work. The guidelines describe two development phases after item generation: pretesting and field-testing of questionnaire but this was not always followed. Some studies determined items based on relevance and importance, assessed from interviews and rating studies. The most common approach was to apply statistical analyses to datasets containing completed questionnaires. Three general types of statistical models were applied: regression analysis, factor analytic techniques and item response theory models. These measurement models were used to establish construct validity, however in most cases further hypothesis testing was carried out to assess known group, convergent and divergent validity. The majority used a combination of statistical methods; with exploratory factor analysis and item response theory being the most common. Psychometric criteriaincluded descriptive statistics of the responses such as missing values, range and distribution of responses and internal consistency.Discussion: The methods used to identify items were similar across studies but differed considerably for item selection.Construct validity and internal consistency was assessed in most of the studies, but few instrument developers relied completely on content validity. Few of the statistical methods identified are interchangeable in terms of purpose, but may generate very different instruments. The developers seldom explained why one statistical model was chosen over another | Louise Longworth | Descriptive Systems | 19500 | Completed | 2016 | |
| 2016310 | A head‐to‐head comparison of EQ‐5D‐3L and EQ‐5D‐5L index scores: more levels is better responsiveness? | The EQ‐5D‐5L questionnaire (5L) has demonstrated better measurement properties than the EQ‐5D‐3L questionnaire (3L) in many cross‐sectional studies. In the only known head‐to‐head comparison of 3L and 5L using longitudinal data, the 5L index was not more responsive than the 3L index to health improvement experienced by stroke survivors. The 5L was found no more sensitive than SF‐6D. However, all these findings may be false because those were based on the interim ‘crosswalk’ algorithm for 5L. It is also unclear whether bolt‐on items can improve the responsiveness of EQ‐5D. This project is aimed to 1) compare the responsiveness of 3L and 5L index scores to the treatment benefit of cataract surgery (primary objective) ;2) compare the responsiveness of the two EQ‐5D index scores, the SF‐6D score, and the HUI3 score to cataract removal benefit (sedondary objective); and 3) evaluate the effect of a vision ‘bolt‐on’ item on the responsiveness of the 3L index score (secondary objective). We propose to interview 210 cataract patients face‐to‐face using a battery of questionnaires including the 3L with a vision ‘bolt‐on’ item, 5L, SF‐6D, and HUI3 before and after their cataract removal surgeries. Responsiveness of 5L, 3L, vision bolt‐on, SF‐6D, and HUI3 will be assessed in terms of Cohen’s effect size (d), standardized response mean, and Fstatistic (squared t statistic) based on the preoperative and postoperative scores generated from these instruments. Relevant country‐specific value sets of these intruments will be applied to the specific comaprisons. | Nan Luo | Descriptive Systems | 68450 | Completed | 2016 | |
| 2016330 | Understanding the relationship between clinical quality of primary care and patient self-reported health on the EQ-5D in England | Abstract Background:There is very limitedempirical evidence in the English National Health Service (NHS)–or indeed from any country –on how the clinical quality ofprimary care impactson patients’ self-reported health. This study sets out to address this gap in the literature, using EQ-5D data. Aims:The primary aim of this paper is to explore what policy-relevant general practice factors, in particular the clinical quality of primary care, affect patients’ self-reported healthin England as measured by the EQ-5D-5L instrument. Data:We usedata from the GP Patient Survey (GPPS) and the national Quality and Outcomes Framework (QOF) datasets in England between financial years 2012/13 and 2015/16. The two datasets are linked by general practice and financial year. The linked dataset covers most general practices in England with around 7,500 to 8,000 practices included in each year.In the GPPS dataset, EQ-5D-5L data are recorded as the number(and %) of patients,at general practice level,ineach level and dimension. From this, we derive two measures of health for each general practice: (1) the practice-level EQ-5D-5L level sum scoreand (2) the practice level EQ-5D-5L indices.To measure the clinical quality of general practices based on the QOF dataset, we calculate two types ofmeasures: the practice level population achievement rate and the proportion of clinical QOF points achieved out of the total achievable clinical QOF points. Methods:We estimate linear panel data multiple regression models with controls for patient and practice characteristics by Ordinary Least Squares (OLS)method and with random and fixed practice effects. In sensitivity analyses, we explore the effects of non-response in the GPPS, lagged effects of clinical quality, and of including non-clinical QOF indicators inthemeasure of clinicalquality. Results:Clinical quality and patients’self-reported health exhibit considerable variation between general practices but not within practices over time. Theabsolute unconditional cross-section correlations between the clinical quality and EQ-5D measures in 2015/16 are between 0.0626and 0.0748. TheOLS and practice random effect multiple regression models suggest that clinical quality has a statisticallysignificant positive effect on improving patients’self-reported healthmeasured by the EQ-5D-5L instrument. The results are consistent whenapplying two proxies for clinical quality measurements and two proxies for patients’self-reported healthmeasurements. However, once we allow for unobserved time invariant practice characteristics with fixed effects regressions the effects are not significant. Discussion:This study is one of the first attempts to use national GPPS and QOF datasets in England to explore the relationship between clinical quality of primary care and patients’ self-reported health as measured by the EQ-5D. The findings suggest that improvements in general practice clinical quality as measured by QOF indicators are not associated with improvements in patient self-reported health as measured by EQ-5D.This may be because there is a lag in the effect of clinical quality on health or because the QOF indicators are a mix of process measures and intermediate outcome measures. | Yan Feng | Populations and Health Systems | 35246 | Completed | 2016 | |
| 2012060 | Valuation of EQ-5D-5L health states for healthcare decision making in Singapore | Background:Traditionally, the valuation of health states worse than dead suffers from 2 problems: [1] the use of different elicitation methods for positive and negative values necessitating arbitrary transformations to map negative to positive values and[2] the inability to quantify that value is time dependent. The Better than Dead (BTD)-method is a health state valuation method where states with a certain duration are compared to dead. It has the potentialto overcome these problems.Objectives:To test the feasibility of the BTD-method to estimate values for the EQ-5D system.Methods:A representative sample of 291 Dutch respondents (age 18-45 years) was collected. In a web-based questionnaire, preferences were elicited for a selection of 50 different health states with 6 durations between 1 and 40 years. Random effect models were used to estimate effects of socio-demographic and experimental variables,and estimatevalues for the EQ-5D. Test-retest reliabilitywas assessed in 41 respondents.Results:Important determinants for better than deadwere a religious life stance (OR 4.09 [2.00 -8.36]) and educationallevel. The fastest respondentsmore often preferred scenarios to deadand had lower test-retest reliability, 0.45 vs.0.77 and 0.84,for fast, medium and slowresponse times.Value estimatesshowed a smallnumber of so-called maximal endurable time states.Conclusion: Valuating health states using theBTD-method is feasible and reliable. Further research should explore how the experimental setting modifies how values depend on time | Nan Luo | Valuation | 29337 | Completed | 2013 | |
| 2016170 | A systematic review of the measurement properties of EQ-5D-5L | BackgroundSince the introduction of the five-level ver-sion of the EQ-5D (5L), many studies have comparativelyinvestigated the measurement properties of the originalthree-level version (3L) with the 5L version.ObjectiveThe aim of this study was to consolidate theavailable evidence on the performance of both instruments.MethodsA systematic literature search of studies in theEnglish and German languages was conducted (2007–January 2018) using the PubMed, EMBASE, and Psy-cINFO (EBSCO) databases, as well as the EuroQolResearch Foundation website. Data were extracted andassessed on missing values, distributional properties,informativity indices (Shannon’s H0and J0), inconsisten-cies, responsiveness, and test–retest reliability.ResultsTwenty-four studies were included in the review.Missing values and floor effects (percentage reporting theworst health state) were found to be negligible for both 3Land 5L (\5%). From 18 studies, inconsistencies rangedfrom 0 to 10.6%, although they were generally well below5%, with 9 studies reporting the most inconsistencies forUsual Activities (mean percentage 4.1%). Shannon’sindices were always higher for 5L than for 3L, and all butthree studies reported lower ceiling effects (‘11111’) for 5Lthan for 3L. There is mixed and insufficient evidence onresponsiveness and test–retest reliability, although resultson index values showed better performance for 5L on test–retest reliability.ConclusionOverall, studies showed similar or bettermeasurement properties of the 5L compared with the 3L,and evidence indicated moderately better distributionalparameters and substantial improvement in informativityfor the 5L compared with the 3L. Insufficient evidence onresponsiveness and test–retest reliability implies furtherresearch is needed. | Ines Buchholz | Descriptive Systems | 21356 | Completed | 2016 | |
| 2016130 | SOME NEW STRATEGIES FOR ELICITING AND MODELING UTILITY VALUES OF MULTI-ATTRIBUTE HEALTH STATES | This project (i.e. workshop) has no direct scientific implications for the EuroQol Group. However,several future research topics emerged during the preparation of the workshop. Future research on the TTO part of the EQ-VT program was discussed, although no specific topics were identified. Basically, we think that more research is needed in this direction since there were many contradicting findings from the MAT project. TTO as the main valuation technique of the EuroQol Group deserves further scientific investigation to improve its validity and friendliness to both interviewers and interviewees. Another research topic is interval regression for modelling TTO data collected by EQ-VT. The advantage of the new modelling strategy is attractive but has not been fully confirmed. The team has discussed future steps to exploring those research topics. There are several strategic implications. Frist, the workshop disseminated the state of the art research conducted within the EuroQol Group to the greater research community. Specifically, we demonstrated how the EQ-VT program works and explained how the EQ-5D-5L value sets can be developed. Second, we had useful interactions with EQ-5D users and researchers on other multi-attribute preference-based instruments during and after the workshop. The interactions were efficient in clarifying questions regarding the design of the EQ-VT and explaining the challenges in generating EQ-5D value sets. Has the workshop reached its goals? Yes, we think so. Our goals were to collect feedback on our research work conducted within the EuroQol Group, to disseminate our latest research findings to the greater research community, and to enhance the leadership status of the EuroQol Group in health valuation research. While it is difficult to assess how successful we were in achieving the last goal, we achieved the first two goals through two presentations and a discussion session with workshop attendees. | Nan Luo | Valuation | 10115 | Completed | 2016 | |
| 2016100 | Valuation of EQ-5D-5L for the Malaysian population | Objectives‐ Primarily the aim is to develop an EQ‐5D‐5L value set reflecting the health preferences of the Malaysian adult population and secondarily to psychometrically validate the Malay and English versions of the descriptive system in Malaysians. Methods‐ 1137 respondents of the Malaysian general public were sampled with quotas for urbanicity, gender, age, and ethnicity in a nationwide study in 8 locations. The study was conducted using a standardized protocol involving the EuroQol Valuation Technology (EQ‐VT) computer‐assisted interview system. Respondents were administered 10 composite time‐trade off (C‐TTO) tasks and 7 discrete choice experiment (DCE) tasks. Both linear main‐effects and constrained non‐linear regression models of C‐TTO only data and hybrid models combining C‐TTO and DCE data were explored to determine an efficient and informative model for value set prediction. Additionally, respondents completed the EQ‐5D‐3L questionnaire on paper and selected respondents were given paper form of EQ‐5D‐5L for completion within two weeks for test‐retest reliability. Ceiling effects, response redistribution, informativity, and convergent validity were compared between EQ‐5D‐5L and ED‐5D‐3L separately by Malay and English language versions. Results‐ The hybrid 8‐parameter model was chosen to represent the Malaysian value set, as it displayed greater out‐of‐sample predictive accuracy other models with the estimated value set ranging from ‐0.442 to 1. In general, ceiling effects reduced in the EQ‐5D‐5l version with higher relative informativity and convergent validity exhibited for both Malay and English versions. Test‐retest reliability testing revealed moderate to poor agreements on all EQ‐5D‐5L dimensions. Conclusions‐ The presence of a validated Malaysian EQ‐5D‐5L value set will facilitate its application in research and health technology assessment activities. | Asrul Shafie | Valuation | 60193 | Completed | 2015 | |
| 2016080 | Variation in health state preferences across local and international populations: East doesn’t meet West | The 2016 CADTH Symposium is the main scientific venue for researchers who conduct health technology assessment/health economics in Canada and government agencies that are involved in decision making in health care. It provided an excellent opportunity to: (1) promote awareness of The EQ-5D-5L Canadian Valuation study and the availability of the value set; (2) present research on geographic variation of preferences, and differences in the relationship between elicitation methods across regions and discuss its implications; (3)highlight the relationships between different preference-based elicitation techniques based on international valuation studies using a standardized protocol (EQ-VT) that demonstrates the state of the science supported by the EuroQol group to inform HTA around the world. Both are areas of scientific and policy-based interest to the EuroQol Group. These topics were of specific interest to policy makers and researchers in Canada, given that provinces are responsible for the delivery of health care services. | Feng Xie | Education and Outreach | 10871 | Completed | 2016 | |
| 2016010 | Writing up a manuscript titled ’Estimating a time trade-off EQ-5D-5L value set for China’ for publication | Background: The availability of the 5-level EQ-5D descriptive system (EQ-5D-5L) provides the opportunity of developing a new preference-based instrument for assessing health technology assessment.Objectives: To estimate an EQ-5D-5L value set for China using the health preferencesof residents living in the urban areas of the country. Methods: The values of a subset of EQ-5D-5L defined health states (n=86) were elicited using the time trade-off (TTO) technique from a sample of urban residents (n=1,271) recruited from 5 Chinese cities. In computer-assisted personal interviews, participants each completed 10 TTO tasks. Two additive and two multiplicative regression models were evaluated for their performance in describing the relationship between TTO values and health-state characteristics using a cross-validation approach. Final values were generated using the best performed model and a rescaling method.Results: The 8- and 9-parameter multiplicative models unanimously outperformed the 20-parameter additive model using a random or fixed intercept in predicting values for out-of-sample health states in the cross-validation analysis and their coefficients were estimated with lower standard errors. The prediction accuracy of the two multiplicative models measured the by mean absolute error and intraclass correlation coefficientwas very similar, thus favoring the more parsimonious model.Conclusions: The 8-parameter multiplicative model performed best in the study and therefore was used to generate the EQ-5D-5L value set for China. We recommend using rescaled values whereby 1.0 represents the value of full health in economic evaluation of health technologies in China whenever EQ-5D-5L data is available.\ | Nan Luo | Valuation | 4500 | Completed | 2016 | |
| 2013110 | The feasibility and usefulness of using the EQ-5D-Y as a routine measure of outcome in a facility for children with chronic illness | 1.Background:The development of the EQ-5D-Y, an outcome measure of HRQoL in children, was undertakenby an international task team and published in 2010 (1). Following the feasibility, reliability and validity studies,undertaken in the main with typically developing children, a recommendation was made to apply the measure in a longitudinal, clinical study to determine its responsiveness to change over a period of time and to monitor effects of treatment (2). .2Aim:The overall aim of the study was thereforeto investigate thepsychometric properties and feasibilityand usefulness of the EQ-5D-Ywhen used to monitor the HRQoL of children within different institutional contexts. This included monitoring the changes in HRQoL over time,assessingthe feasibility of the process of data collection as well as examining how useful the collected data were to the health providers.3Methods:Ethical approval was gained from the Human Research Ethics Committee of the University of Cape Town. A longitudinal, analytical descriptive study design wasused within four different contexts. Children were recruited from a mainstream school(MS); aconvalescent homefor children with chronic diseases(Chronic Centre, CC); special school (SS) for childrenwith physical disabilities and an acute care (AC) hospital. The EQ-5D-Y was the primary outcome measure. The PedsQL(1)was used as a parallel measure to assess HRQoL andthe WeeFIM(2)to assess function.Appropriatelanguage versions of each instrument were used (i.e. English, Afrikaans and isiXhosa, translated under the direction of the researcher if no version available). Repeated measures were taken at three month intervals, or, in the case of acutely ill children, at admission and at discharge. A self-designed questionnaire was used during interviews with the therapists who were treating the childrento assess feasibility and usefulness.4Results:4.1ParticipantsA total of 224 children were recruited, approximately 130 from the Institutions and 100 from the MS (See Figure 1). The mean age of the children at the various institutions was 10.5 years (Standard Deviation (SD) =1.45), with a minimum age of 7.0 years and a maximum of 13.8 yearsand therewas no significant difference in the mean ages between the institutions (p=.379).Health conditions ranged from cerebral palsy(18), to spina bifida (10)spina bifida, HIV(8) and diiabetes, muscle diseases, neoplasms, appendicitis and joint injuries. | Jennifer Jelsma | Youth | 25932 | Completed | 2013 | |
| 20170610 | Legitimacy, use (and mis‐use) of Minimally Important Differences (MIDs) with the EQ-‐5D: A systematic review | We conducted a systematic review on minimally important difference for EQ-5D. We worked together with a librarianand established comprehensive search strategies for MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus, and Cochrane Library. Subject headings and textwords relating to ‘minimally important difference’ and ‘EQ-5D’were searched in the aforementioneddatabases. No language restrictions were applied. Studies with at least one original estimated MID of the EQ-5D were included.We hired two research assistances (PhD students) to conduct screening and data extraction together with two APERSU research team members. MID estimationsidentified in our reviewwere summarized based onEQ-5D components, estimation methods, patient population, baseline health status and direction of change. We also took a close look at allanchor-based approachestimations, and conducted a critical review focusing on methodological limitations regarding this approach. | Jeffrey Johnson | Populations and Health Systems | 16882 | Completed | 2018 | 2019 |
| 155-RA | Performance of the EQ-5D in the European aging population – A study on measurement properties, population norms, health inequalities and determinants of health in a large representative sample of European adults aged 55+ using the SHARE-data | The primary deliverables are the results from three secondary data analyses based on the fourth wave of the Survey of Health, Ageing, and Retirement in Europe (SHARE), as described in the study proposal. Major findings will be published in international (open access) journals and presented on international conferences and the EuroQol plenary meeting. Two manuscripts are currently submitted, and a third manuscript is being prepared. Based on the planned analyses, we investigated the measurement properties of the EQ-5D-3L in the (SHARE) population of elderly Europeans (I), developed country-specific EQ-5D-3L norms stratified by age-groups and gender for the elderly Europeans (II), studied health inequalities using single and combined indicators of socioeconomic status (SES) and their relative importance as determinants of health in the ageing European population (III). | Bas (MF) Janssen | Populations and Health Systems | 47360 | Completed | 2020 | 2022 |
| 2016190 | National EQ-5D Symposium and Valuation Workshop | A total of 18 potential interviewers were selected to undergo the three‐day valuation workshop. Two esteemed EuroQol Board Members, together with the Investigator Team moderated the workshop. The entire workshop was held at Universiti Sains Malaysia, Penang. On the first day of the workshop, held at the Main Meeting Room of the School of Pharmaceutical Sciences, the participants were exposed to the various concepts and interview techniques pertaining to the Valuation Study. A series of comprehensive lectures were delivered by experts from the Investigator Team and by one of the invited representative from EuroQoL. The participants were also familiarized to the interview script by are corded mock session of the interview (Appendix1), besides practising the script among colleagues. These cond day of the workshop included mock interview sessions organized at the lobby are alocated beside the university’s Main Library. Each participant interviewed a minimum of five individuals using the official script of the Valuation Study. The Investigator Team evaluated each participant’s performance to ensure only well‐prepared interviewers are selected to participate in the Valuation Study. The final day of the workshop included a round‐table discussion held again at the Main Meeting Room of the School of Pharmaceutical Sciences. The participants had a chance of sharing their experience of conducting the mock interviews and raise any queries pertaining to the interviews. Generally, the participants shared that they enjoyed their new experience of interviewing and encountering interviewees from different walks of life. The invited guests from EuroQoL were generous in sharing their expert advice and experience in conducting such interviews. Additionally, the performance of the participants’ mock interviews was also formally reviewed using official quality control methods adopted by EuroQoL. Each of the 18 participants passed the performance review and were selected to represent the Valuation Study Team of Interviewers. Overall, the moderators of the workshop were very satisfied with the participation, enthusiasm, and energy of the participants of the workshop and hoped that that would follow through the entire Valuation Study. | Asrul Shafie | Valuation | 14519 | Completed | 2016 | |
| 20180380 | The added value of bolt on dimensions: a systematic review of studies that analyzed the performance of proposed bolt-ons for the EQ-5D | Abstract of researchBackground: The question whether dimensions should be added to the EQ-5D from a generic perspective has been debated and researched since its launch in the beginning of the 1990s. Several authors suggested valuable add-ons and subsequently the performance of severalof these bolt-ons were tested in varying (patient) populations. However, currently, an overview of bolt-on studies, performanceand the metrics that have been used to test performance is lacking. Study aim: The aim of this study is to systematically review all published studies on the (psychometric) performance of EQ-5D bolt-ons. This includes both descriptive and valuation studies. Methods: First, a systematic literature search will be conducted in EMBASE, MEDLINE and other databases. This search will be appended with a search of key papers and the EuroQol Plenary Meeting Proceedings from 1991. Second, two reviewers will screen, titles, abstracts and full-text articles independently. Third, information on the bolt on (description of the items, response categories (3L, 5L, other), language, source/origin of the bolt on, study population, cognitive debriefing of the bolt-on and (psychometric) performance metrics)will be extracted. We willcategorizethe psychometric methods that were used to test performance intothe following groups: descriptive data/preference weighted data, cross-sectional vs longitudinal-intervention-panel data, and redundance vs. predictive value vs. Shannon’s indices.Results:The study will provide an overview of bolt-on studies, format and origin of bolt-onsthat were tested,setting in which these bolt ons were studied, andan overview ofpsychometric methods and performance of these bolt-ons. | Juanita Haagsma | Descriptive Systems | 21054 | Completed | 2018 | |
| 20180460 | Psychometric assessment of the eQALY item pool in Australia | The ‘Extending the QALY’ project aims to develop a broad measure of quality of life for use in economic evaluation across health and social care. While the project consists of six stages, the proposed research plan is concerned with the fourth stage (psychometric validation).This follows assessment of the face-validity of the E-QALY items in Australia as part of stage 3 of the wider project. The overall aim of this study is to test the psychometric validity of the E-QALY item pool using data collected from Australian respondents. We will collect online data from a sample of 500 people in Australia with a self-reported health condition (covering a range of physical and mental conditions)and a healthy sample, using a range of instruments with different measurement frameworks. This includes the E-QALY item pool, measures of health-related quality of life (EQ-5D-5L and AQoL-8D), and a measure of wellbeing (WEMWBS). It is expected that this study will complement the psychometric analysis conducted by the UK E-QALY team for various reasons: (i) the E-QALY item pool will comprise additional items that were important to Australians in the face validity work, but were excluded by the UK E-QALY team; (ii) the item pool will include new items that were identified during the face-validity study in Australia; (iii) the inclusion of the AQoL-8D will extend the information available to psychometrically test the E-QALY item pool as it includes a number of domains that overlap with those developed by the E-QALY team; (iv) the Australian site will recruit additional patient groups that are not well coveredin the UK psychometric study. Overall, findings from the Australian psychometric study will provide additional data to support the item reduction and selection process. | Brendan Mulhern | Descriptive Systems, EQ-HWB | 19200 | Completed | 2019 | |
| 2015050 | Important aspects of (full) health not captured by EQ-5D | Background:Studies to produce value sets for preference-based measures of health require a full health upper anchor to be defined if the values are to be used to calculate quality-adjusted life years.A recentempirical study assesseddifferences in time trade-offvaluations using two comparator health states: 11111 and full health. The primary results of thatstudy suggest that EQ-5D-5L health state values are not greatly affected by whether 11111 or full health is used as the comparator state.The study also generated data on how survey respondents interpreted those descriptions, and on what aspects of health they consider to be missing from the EQ-5D descriptive system.Aims:To report the methods and findings of an analysis of the qualitative data collected relating to the following questions: Whatmakes 11111 and full health different? What important aspects of health are not captured by the five EQ-5D dimensions?Methods:Data were collected froma broadly representative sample of the UK general publicvia face-to-face interviews. After completinga valuation questionnaire using EQ-VT, respondents completeda short pen-and-paper follow-up questionnaire. Thefollow-up tasks were developed by the study team to elicit additional information about the comparability between 11111 and full health and respondents’ interpretations of those concepts; and to inform the ongoing research agenda around the measurement of health beyond the existing EQ-5D descriptive system.A combination of descriptive and thematic techniques were used to analyse the data. Results:Interviews were conducted in 2014. Data are available for 436 respondents. A sizeable minority (30%) of respondents did not agree when asked whether they considered 11111 and full health to be the same as each other. When asked what makes them different, many respondents suggested that the five EQ-5D dimensions are not exhaustive of all conditions and health problems. Sensory deprivation (particularly vision and hearing) and mental health were the aspects of health most commonly suggested by respondentsas being important but not captured by EQ-5D.Discussion and Conclusions:To some extent, the findings of this study support the choice of areas in which developmental bolt-on work has been conducted to date. Further research is required to establish whether and what people would be willing to trade for improvements in the aspects of healthnot currently included in the EQ-5D.We hope that this study can provide a basis for more detailed qualitative and quantitative research to inform further review of theEQ-5D descriptive system. | Koonal Shah | Valuation | 7500 | Completed | 2015 | |
| 20170440 | Creating a laboratory for testing differences between the 3L and 5L Index in patient populations: simulating profile and valuation data | We created the ‘simulation laboratory’ as a suite of modules with associated data sets by iterative development of software. In doing this, the specific form and structure of the laboratory evolved from the prototype plan but resulted in the same functionality. We presented our initial plan at the mid-year meeting in Budapest in 2018 and demonstrated the results of the final structure at the plenary meeting in Lisbon later that year. Since then, we have concentrated on making the software more user friendly, written a user guide and added to the associated data sets. | David Parkin | Descriptive Systems | 42875 | Completed | 2017 | 2018 |
| 20170600 | Comparatively investigating sensitivity to change of the EQ-5D-3L and the EQ-5D-5L descriptive systems and seven country-specific value sets using different methodological approaches | Introduction: Since the introductionof the EQ-5D-5L (5L) a growing body of literature comparedthe measurement properties of the 5L with the original three-level EQ-5D (3L). So far comparisons on responsiveness for change are rare. This study compares the responsiveness of the 3L and the 5L descriptive systems and (index)values, using two available longitudinal datasetsof rehabilitation patients with mild/moderate health problems,and of stroke patients with severe health problems. We separated descriptive from value effectsfollowinga previous 3L-5L comparative study, whichshowed that 3L descriptions systematically overestimate the presence of health problems, leading to biased 3L valuesand an over-or underestimation ofdiscriminatory power. Methods: First, descriptive results were compared cross-sectionally. Second, inconsistencies between 3L and 5L were determined (3L improves while 5L deteriorates within patient or vice versa). Descriptive responsiveness was tested through the% changed level responses (‘moves’) from baselineto follow-up, % of improved patients (a.o. according to the Paretianclassification of health change, PCHC), and the probability of superiority(PS), a non-parametric effect size measure. Subsequently wecalculated values based on ten country-specific value sets for both patient samples. Responsivenessof these values was assessed throughthe standardized response mean (SRM) and standardized effectsize (SES), using the level sumscore as reference. External anchors to classify patients into change categories were based on a self-rated health question (rehabilitation sample), and the modified Rankin Scale (mRS) and Barthel Index (stroke sample).Relative efficiency of 5L over 3L was assessed by calculating ratios of the SRM and SES statistics.Results: Cross-sectional descriptive comparisons confirmedearlier evidence and showed an overestimation for health problems in 3L. Change inconsistencies between 3L and 5L were rare(average 1.0% bydimension for rehabilitation; 1.1% for stroke). Averagelevelmoves per respondent were 0.16 (3L) vs. 0.30 (5L) in rehabilitation, and 0.34(3L) vs. 0.58 (5L) in stroke (by dimension). 50% (3L) vs. 60% (5L) of patients improved in rehabilitation, while 51% (3L) vs. 44% (5L)in stroke (PCHC). The average PS,however,showed better performance of 5L over 3L in both samples (rehabilitation: PS3L= 0.57, PS5L= 0.59, stroke: PS3L=0.59, PS5L= 0.63). Using external anchors, 5L index values demonstrated larger responsiveness in rehabilitation patients, independently from value set and method. In stroke patients, however, 3L showed larger SES/SRMs compared to 5L, except for the SRM results on the mRS anchor, where results were similar. Relative efficiency results for rehabilitation indicated that 5L outperformed3L strongly for SRM and slightly for SESresults. In stroke 3L outperformed5L slightly (SRM) tomoderately (SES) for the Barthel Index anchor-based data while for mRS3L was moderately better for SES but similar to 5L for SRM. Conclusions: Descriptive responsiveness of 5L generally outperformed 3L in both clinical groups; the same was true for valueresponsiveness in rehabilitation, but not in stroke. As in previous cross-sectional comparisons, descriptive results were the main driver of the 3L/5L specific differences in responsiveness. Responsiveness of 3L was influenced by the 'confinedto bed' label. The overestimation bias of 3L affected all responsiveness results.Most likelythis bias will impact QALY estimations, leading to over-or underestimations of QALYs gaineddepending on the condition and condition severity.QALYs based on 5Lwill result in more precise estimates. | Bas Janssen | Descriptive Systems | 29700 | Completed | 2018 | 2018 |
| 2015440 | Valuing health states ’in context’ | Introduction: In EQ-5D valuation studies, health states have by convention beenpresented as a series of five sentences, each describing a health dimension and severity‘level’. Since the introduction of the EQ-5D-5L, the valuationof the descriptive system may have become more challenging. Preference inversions, for example between levels 4 and 5,have been identified in various EQ-5D-5L valuation studies. A solution could be to mimic the way in which patients self-report their own health using the EQ-5D-5L descriptive system, where the ordinal structure of levels 1 to 5 is clear. The aim of this study is to develop and test the feasibility of presenting health states in the ‘context’ of the whole descriptive system, and to understand how this affects valuation data.Methods: A two-arm discrete choice experiment (DCE) study was conducted online (n=993). Respondents were randomly allocated to either the control (standard EQ-VT display), or the ‘context’ arm (health states described in the context of the descriptive system).Each respondent wasrandomly allocated to two of 28 blocks (from the EQ-VT experimental design),and completed14 DCE tasks plus two fixed pairs, chosen to address specific research questions. The survey also includedbackground and feedback questions. Differences across arms wereassessed using regression analyses, and the numbersof correctly ordered coefficients and logically inconsistent responseswere examined. Differences across arms weretested on the pooled dataset.Results and discussion:Presenting health states ‘in context’ is feasible, and we demonstrate that this can significantly reduce the number of respondents selecting logically dominated health states, particularly for the labels ‘severe’ and ‘extreme’(χ²=46.02, p<0.001). Comparing conditional logit modelling results between arms, we find that coefficients are ordered as expected for both arms (apart from the ordering of MO2 and MO3 for the control arm, but this is not statistically significant), but the magnitude of decrements between levels islarger for the context arm, particularly for levels 4 and 5. The likelihood ratio statistic of the restricted pooled model is 42.00, which leads us to reject the null hypothesis of preference homogeneity between the two arms, suggesting that preferences were significantly different between arms. Our results could have implications for valuing EQ-5D states using DCE andother methods such as time trade-off (TTO). It may also haveimplications for the requirement to label each level. | Koonal Shah | Valuation | 33500 | Completed | 2015 | |
| 2015410 | Writing a manuscript titled ’valuation of health outcomes using the time trade-off technique: the EuroQol protocols’ for publication in the journal of Pharmacoeconomics | The time trade‐off (TTO) valuation technique is widely used to determine utility values of health outcomes to inform calculations of quality adjusted life years (QALYs) for use in economice valuation. Protocols for implementing TTO vary in aspects including the trade‐off framework, iteration procedure and its administration model and method, training of respondents and interviewers, and quality control of data collection. The most widely studied and utilized TTO valuation protocols are the Measurement and Valuation of Health (MVH) protocol, the Paris protocol, and the EuroQol Valuation Technology (EQ‐VT) protocol, all developed by members of the EuroQol Group. The MVH protocol and its successor, the Paris protocol, are developed for valuation of EQ‐5D‐3L health states. Both protocols are designed for a trained interviewer to elicit preferences from a respondent using the conventional TTO framework with a fixed time horizon of 10years and an iteration procedure combining bisection and titration. Developed for valuation of EQ‐5D‐5L health states, the EQ‐VT protocol adopts a composite TTO framework and makes use of computer technology to facilitate data collection. Training and monitoring of interviewers and respondents is a pivotal component of the EQ‐VT protocol. Research is under way aiming to further improve the EuroQol protocols which form an important basis for the current practice of health technology assessment in many countries. | Nan Luo | Valuation | 13912 | Completed | 2015 | |
| 2015430 | The impact of overlap and color coding on response efficiency in discrete choice experiments | Objective To test the hypothesis that level overlap and color coding can mitigate or even preclude the occurrence of attribute non-attendance in discrete choice experiments. Methods A randomized controlled experiment with five experimental study arms was designed to investigate the independent and combined impact of level overlap and color coding on respondents’ attribute non-attendance. The systematic differences between the study arms allowed for a direct comparison of observed drop-out rates and estimates of the average number of attributes attended to by respondents, which were obtained using augmented mixed logit models that explicitly incorporated attribute non-attendance. Results In the base-case study arm without level overlap or color coding, the observed drop-out rate was 14% and respondents attended on average only 2 out of 5 attributes. The independent introduction of level overlap and color coding both reduced the drop-out rate to 10% and increased attribute attendance to 3attributes. The combination of level overlap and color coding, however, was most effective: it reducedthe drop-out rate to 8% and improved attribute attendance to 4 out of 5 attributes. The latter essentially removed the need to explicitly accommodate for attribute non-attendance when analyzing the choice data. Conclusion Based on the presented results, the use of level overlap and color coding are recommendable strategiesto reduce the drop-out rate and improve attribute attendance in discrete choice experiments. | Elly Stolk | Valuation | 59725 | Completed | 2015 | |
| 2015460 | The Relative Value of Social Outcomes in Health Technology Assessment | A key outcomein the evaluationof health technologies is the quality adjusted life year (QALY)which is oftenestimatedusing health measuressuch as EQ-5D. However, the impact of many interventions extends beyond a narrow definition of health to include non-health impactssuch associal care. This means that there are circumstances where the QALY doesnot capture the full value of an intervention.In response to this,instruments with a broaderperspective such as ASCOT, which measures social care related quality of life, havebeen developed. Given the growthin available measures, it is important that decision-makers have tools to assess value for money consistently. However, eliciting preferences for different aspects of QoL,to allow for the combined benefits to be captured within the same framework,has not been tested. We investigate the relationship between health and social care aspects of QoL when assessed jointly by combining theEQ-5D-5L and ASCOTin an online discrete choice experiment (DCE). Each respondent completed 15DCEtasks from an underlying design of 300 choice sets. Analysis used conditional logit regression to estimate coefficient decrements for each attribute and examine theirrelative importance. Latent class and mixed logit modelling were used to understand heterogeneity in preferences.Overall 975 people completed the survey. The results suggest evidence oftrading acrosshealth and social careaspects, as indicated by differences in the magnitude of the coefficients across the different aspectsincluded. There is evidence of preference heterogeneityacross the dimensions, particularly at the more severe levels.We have used an established valuation methodology to demonstrate that it is possible to value concepts measuring different aspects of quality of life on the same underlying scale. The results inform further valuation work eliciting preferences for instrumentscombining outcomes from multiple perspectives. | Brendan Mulhern | Others | 14680 | Completed | 2015 | |
| 20180250 | The EQ-5D-5L INSTRUMENT: PAST, PRESENT AND FUTURE | A 1-hour workshop was delivered on Sunday, 9 September 2018 at 3:45pm in Keio Plaza Hotel (Tokyo, Japan). It was in the program of the ISPOR 8th Asia-Pacific Conference. The title of the workshop was “The EQ-5D-5L INSTRUMENT: PAST, PRESENT AND FUTURE”. | Nan Luo | Education and Outreach | 9660 | Completed | 2018 | |
| 2015260 | Hybrid model in R | This was not a study in the normal sense, but the process has been helpful in identifying several issuesrelated to hybrid modelling that call for further investigation. The R hyreg command will make hybrid regression available to a larger audience, and unlike STATA, is completely free. The xreg function will hopefully simplify future modelling efforts both related to EQ-5D, and in general. | Kim Rand | Valuation | 14150 | Completed | 2015 | |
| 2015230 | Funding proposal for an scholarship for international travel and cooperation | To startup and to develop a detailed protocol for methodological valuation research in China, using the opportunity of an already funded talented PhD student (Zhihao Yang), we want the research group (PhD - (co)supervisors and PhD candidate) to meet in Rotterdam. To facilitate such meeting, we applied for EuroQol Funding. The PhD student Zhihao Yang was already in Rotterdam, just like his supervisor Jan Busschbach and the co-supervisor Elly Stolk. The second co-supervisor Nan Luo is located in Singapore, and therefore we ask for funding the time, travel and housing of Nan Luo for two weeks, from 21st Sep to 2nd Oct, 2015. We also asked for funding for the time Jan Busschbach and Elly Stolk during the stay of Nan Luo, to facilitate the cooperation. At that time Elly was still employed by the university, and therefore we asked funding for her university time for this cooperation. | Jan Busschbach | Education and Outreach | 20500 | Completed | 2015 | |
| 20190940 | Health state utility rescaling and interpersonal comparisons | Funding applicationfor a one-week research visitThis proposal aims to bring together three ongoing projects:Jakubczyk, Sampson, and van Hout/Schneider independently conceived researchrelating to utility rescaling. While the analyticalapproaches and rationales differ, all three share the notion that EQ-5D health state utilities are not directly comparable across individuals. Most notably, comparisons between those individuals who do, and those who do not consider some health states to be worse than dead are problematic. Therefore,utilityvalues need to be rescaled (e.g. min-max normalisation), before they can be aggregated into a social value set. A collaboration between the three research projectswill be established toexchange knowledge and conduct comparative analyses. Funding is sought for a one-week period of focused collaborative work. During this period,the rescaling methods and their conceptual foundationswill be discussed, compared and contrasted. This will allow further refinement and contribute to a deeper, more systematicunderstanding of interpersonal utility comparisons in the context of EQ-5D health state utility values.The collaboration will result in a working paper and also create‘rescaled’ EQ-5D 5L value sets, based on preference data from England and/or Poland. | Ben Van Hout | Valuation | 12200 | Completed | 2020 | |
| 20190910 | Case-mix adjustment of EQ-5D health profiles for the purpose of hospital performance assessment | There is increasing interest in using routinely collected EQ-5D data to compare the performance of healthcare providers in terms of their patients’improvementsin health-related quality of life. An essential condition forsuch comparisons to be valid is that they shouldadjust for differences between providers in thecharacteristics of thepatients that they treat; a process known as case-mix adjustment. The prevalentapproach is to estimate a case-mix adjustment model that relates patient and provider characteristics directly toEQ-5D valuesand to use thisto generate provider-specific outcomesin terms of changes in adjusted EQ-5D values. However, this approach haslimitations. For example,it does not make full use of the information provided by the underlying EQ-5D profile data,and it generates results that are specific to the value set used. We propose an alternative approach that will generatefor providers the mix of EQ-5D profilesadjusted for patient and provider characteristics, with associated probabilities. These can then be used to generate EQ-5D valuesor analysed in profile formfor use in performance comparisons. This approach relies on predicting dimension-specific case-mix adjusted responses using a multivariate regression framework. In this project we will use a simulation study to investigate the statisticalproperties of both methods, how well they can identify performance variation, and which context-specific factors should guide the choice of methodology in applied research. We will follow this up with real-world case studies to establish feasibility of the proposed method in commonly-encountered performance assessment settings. | Nils Gutacker | Populations and Health Systems | 34660 | Completed | 2020 | |
| 2015280 | EQ-5D-3L in Hematologic Malignant Neoplasms: a Systematic Review of Health State Utility Values | BACKGROUND:A rapid development of new drugs and new indications for registered drugs in the area of hematologic malignancies is observed, which may increase the need for cost-utility analyses and health state utilities estimates.AIM:To systematically review data on EQ-5D use in patients with hematologic malignancies (ICD-10: C81-C96and D46) and sum up health state utilities, descriptive system results,and psychometric properties in this area.METHODS:In February 2016,we ran a systematic search in MEDLINE (PubMed), EMBASE, Cochrane Library, EuroQol website, CEA Registry, LILACS (VHL), ProQuest, CRD,and Web of Science. Additional references were obtained from reviewed articles. The search strategy combined MESH, EMTREE,and free-text terms respecting the population and the EQ-5D instruments (EQ-5D-3L, EQ-5D-5L or EQ-5D-Y). Two authors independently screened titles and abstracts of studies found duringthe searches, and then at least two authors screenedfull texts of selected articles. Data from studies meeting the inclusion criteria were extracted using a pre-determined extraction form. RESULTS:Three hundred eighty eight abstracts were initially identified and screened,and 101 records were screened in full text. Finally, 54 full text papers (49 referring to EQ-5D-3L, 4 to EQ-5D-5L,and 1 to EQ-5D-Y) were included in the review. The most popular clinical diagnoses included: multiple myeloma (20 papers), chronic myeloid leukemia (7), acute myeloid leukemia (5), myelodysplastic syndrome (4), Hodgkin lymphoma (3), follicular lymphoma (3),andnon-Hodgkinlymphomas (ICD10: C82-C88; 6 papers). In total, 332 health state utility values (including 301 EQ-5D-3L values), ranging from -0.28 to 0.98 were reported in 46papers. The highest number of health state utility values (HSUVs)was reported for multiple myeloma (n=133; range: -0.025 to 0.923) and chronic myeloid leukemia (n=49; range: -0.28 to 0.91). EQ descriptive system and EQ VAS results were presented in 12 and 23papers, respectively. In terms of EQ-5D psychometric properties, validity, reliability and responsiveness weredescribed in 11, 1,and 3 papers, respectively. CONCLUSIONS:A largenumber of EQ-5D-derived health state utilities for hematologic malignant neoplasms was identified, although huge inequalities in HSUVs’ availability between diseases were also noticed. Details of review results will be presented in a systematic way. | Dominik Golicki | Descriptive Systems | 14800 | Completed | 2015 | |
| 2015010 | Revisiting TTO | not available | Anna Lugner | Valuation | 26250 | Completed | 2015 | |
| 20190220 | Exploring the relationship between EQ-5D-5L and PROMIS-29 | The PROMIS set of measures represent an important body of work and there is increasing use of them both in the US and further afield, including in the UK and Australia. They are accompanied by utilities via PROPr. Both EQ-5D and PROMIS-29 are potential candidates for use in evidence for HTA. However, our literature review (paper 1 from this project) revealed there is very little evidence about how they compare in terms of measurement and valuation. In paper 2, we compared all theoretical values generated by PROPr based on PROMIS-29 instrument and compared these with the EQ-5D-5L value sets for US, Australia and England. There are very substantial differences in the properties of these values, and PROPr utilities have some unusual characteristics. In Paper 3 we examine and compare the psychometric performance of PROMIS-29 and EQ-5D-5L in a cross-section sample of patients with diverse health problems. The measurement and valuation properties of each instrument interact in complex ways. We conclude that which instrument is chosen is likely to have an important bearing on QALY estimates but how they compare depends on the nature and severity of the condition of interest. | Nancy Devlin | Descriptive Systems, Valuation, Populations and Health Systems | 54239 | Completed | 2019 | |
| 20190410 | US population norms for the EQ-5D-5L | Aim: The EQ-5D-5L is usedin many health-related fields, including patientclinical assessmentand cost-utility analyses. Inthese applications, a set of norms would be useful to allow for comparisons betweenthe population of interestand the general population. The aim of this study is to estimate population normsfor the EQ-5D-5L visual analogue and index-based scores.Methods: Data from the US EQ-5D-5L face-to-face (andpotentially the online)valuation studieswhich used age, gender and race/ethnicity-based quota sampling forthe US adult general populationwill serve as the data source. Conceptual and statistical considerations will be evaluated for appropriateness of using the face-to-face and/or the online study. Descriptive statistics (mean, standard deviation, interquartile range and 95% confidence intervals) will be reportedby gender/age bands for the VAS and EQ-5D-5L index-based summary scores using the value set based on the international protocol (Pickard et al, 2019).Significance: The availability of US 5L norms will help facilitate useand interpretationof the EQ-5D-5L in the United States for both economic and non-economic purposes, thereby encouraging use of the measure. | Simon Pickard | Valuation | 17600 | Completed | 2019 | |
| 20190250 | Psychometric testing of proxy EQ-5D-5L-Y in caregivers of paediatric patients with idiopathic scoliosis | ProxyEQ-5D-3Lquestionnaire for youth (EQ-5D-3L-Y), which has three severity levels,is a health utility measure for caregivers to rate the child/adolescent’s health-related quality of life (HRQOL). An extended version of the questionnaire, namely EQ-5D-5L-Y, which has 5 severity levels, could be more sensitive and discriminative in adult version. Both questionnaires rated by patients’ proxy are alternative measurement for child’s and adolescent’s HRQOL. However, no comparison betweenthe proxy version of EQ-5D-3L-Y and EQ-5D-5L-Y has been reported so far.This studyaims to assess the feasibility of the proxy EQ-5D-5L-Y from caregivers and compare it with proxy EQ-5D-3L-Y in Hong Kong children and adolescent. Redistribution properties, relative efficiency and informativity of the three questionnaires will also be compared. One hundred consecutive patients will be recruited from the paediatrics and spine clinics in a public Hospital in Hong Kong. The inclusion criteria for the patients are: 1) Having a diagnosis of juvenile (JIS) or adolescent idiopathic scoliosis (AIS), 2) aged 8-17 years, and 3) having the ability to read and converse in Chinese. They will be interviewed and asked to complete the EQ-5D-3L-Y and EQ-5D-5L-Y and provide their socio-demographics and clinical characteristics, while their caregivers will be interviewed with proxy version of EQ-5D-3L-Y and EQ-5D-5L-Y. Responsiveness will be assessed by asking patients and their caregivers to complete the questionnaires at 3- 9 months again after baseline survey. | Carlos Wong | Youth | 7300 | Completed | 2019 | |
| 20190800 | Measuring and Valuing Patient-Reported Outcomes in Economic Evaluations of Health Care Workshop | The format of the presentation is outlined below, and the aims of the workshop. There are several strategic advantages to the EuroQol Group support of this workshop. This is the second annual conference for the China National HTA in Beijing. Approximately 800 attendees went last year, it is expected more will attend this year. There is interest in understanding approaches to valuing health in health technology assessment. Drs. Xie and Pickard are established academicians who have extensive experience presenting on this topic, and have previously co-presented workshops at ISOQOL, HTAi and ISPOR. Dr. Xie is an invited plenary speaker at the conference, and has established ties with the Chinese Ministry of Health that is involved in organizing the conference. This workshop is an opportunity to further build upon developing a relationship with the ministry and HTA organizations in China. The EuroQol Group has strategic interest in promoting understanding of approaches to valuing health. Although we are not explicitly “promoting” the use of the EQ-5D, a more nuanced approach is intentionally used here, where the EQ-5D will be used for exercises and featured as the foremost utility measure used globally. China has great strategic value for the group, as it is rapidly developing its own pharmaceutical industry, and this educational outreach initiative broaden efforts by the EuroQol group for goodwill relationships in Asian countries, particularly China. | Simon Pickard | Education and Outreach | 7400 | Completed | 2019 | |
| 20190170 | Which utility function do respondents (actually) use when completing DCE-duration choice tasks? | not available | Marcel Jonker | Valuation | 29000 | Completed | 2019 | |
| 20190660 | Funding application: Early Career Researcher Meeting | not available | Koonal Shah | Education and Outreach | 48275 | Completed | 2019 | |
| 20180610 | An investigation of constructing EQ-5D-5L value sets by censoring time-trade off data at 0 | One study submitted to the EuroQol Plenary meeting for discussion.2.One manuscript submitted to an International peer-reviewed journal for publication. | Zhihao Yang | Valuation | 14200 | Completed | 2018 | |
| 20190010 | QALY estimation for HTA: The EuroQol approach. 2019 HTAsiaLink Annual Conference | HTAsiaLink is the regional network of HTA agencies in Asia (www.htasialink.org). The annual meetings of HTAsiaLink are attended by more than 100 analysts and administrators of HTA agencies in Asia as well as academics. It is a platform for HTA agencies to learn from each other’s experiences and share information. The annual meetings provide a good platform for the EuroQol Group to reach out and educate Asian HTA practitioners with the EuroQol development and research work done in recent years, such as the Asian 5L valuation studies. HTA practitioners may not know the EQ-5D instruments or the value sets well. Also importantly, the HTAsiaLink meeting is a good opportunity to spread the news among Asian HTA practitioners and researchers that EQ-5D is now free for any non-commercial use. Recently, some leaders in HTAsiaLink expressed their serious concerns about the license fees for using EQ-5D instruments. They may not know the new fee policy recently implemented by the EuroQol Group and be conservative or even resistant to the EuroQol instruments. I am invited by the organizing chair of 2019 HTAsiaLink annual meeting to give a 30-mins presentation on the topic of QALY estimation for HTA: The EuroQol approach. This will be the first time to introduce the EQ-5D instruments in the annual meeting of this most influential Asian HTA community. Because of the misunderstanding of HTAsiaLink leaders about the EuroQol fee policies, I will emphasize the new policy in my presentation as well as in the social activities of this 3-day conference. The synopsis of my presentation is as below. Cost-utility analysis (CUA) is the most popular form of economic evaluation in health technology assessment. The EQ-5D instruments developed by the EuroQol Research Group have been used worldwide to collect health-related quality of life data for estimating qualityadjusted life years (QALYs) in CUA. Being newcomers in health technology assessment, Asian countries are following the steps of Western countries to establish their own evaluation systems and methods. For estimating QALYs, the first EuroQol instrument (i.e. EQ-5D-3L) was introduced to Asia in 1990s and a lot of research and development have been done in the region especially in recent years. However, it is not entirely clear how the EuroQol instruments have been used in Asian countries and, more importantly, how appropriate it is to use such instruments given the very different cultures between the East and the West. This preconference workshop is designed for participants to evaluate the latest evidence on the use and research of EuroQol instruments in Asia, identify and prioritise existing issues and knowledge gaps, and brainstorm ideas for future work in this area. To inform and facilitate the discussion among participants, recent research and development on EuroQol instruments in Asia will be presented in the workshop. Those include EQ-5D-5L value set studies, a 4-country Version 26JAN2017 3 qualitative study of the EuroQol health concepts, a systematic review of the psychometric properties of preference-based instruments, and a systematic review of the use of preferencebased instruments in CUA. | Nan Luo | Education and Outreach | 2880 | Completed | 2019 | 2019 |
| 2016360 | Health related quality of life measurement -uses in economic evaluation and population health. | not available | Federico Augustovski | Education and Outreach | 15000 | Completed | 2016 | 2016 |
| 20180240 | Developing and testing a new Stata command to calculate country-specific index values from EQ-5D-5L responses | The development of the eq5d5lcommand has followed the three phases described in the original proposal. In phase 1, we concentrated on the design of the command and modified thebeta version code to follow best-practices of ado programming in Stata. During phase 2, we incorporated all the recent country-specific value sets in the command, prepared the help file and the graphical user interphase (GUI). Finally, in phase 3, we tested the commandto ensure that the values produced with eq5d5l for each of the 3,125 health states for different country-specific value sets were identical to the values published in their original publications. To do this, we developed a tester file that predicted utility values for the 3,125 health states and for each of the 11 country-specific value sets, and compared these predictions with the calculations using the eq5d5l command.We were able to replicate the results accurately. In addition, during this final phase we contacted the corresponding authorsof the 11 country-specific value sets available at the time we prepared this report,and asked for their feedback about the command. In our original letter to the authors, we asked them to use eq5d5ltoobtain predictions for the 3,125 health states andcompare thesepredictions fromestimations from their original work. As of the time of the preparation of this final report we have received feedback from five authors who were able to replicate their values accurately using the eq5d5l command. | Oliver Rivero-Arias | Valuation | 7550 | Completed | 2018 | 2018 |
| 20170430 | Comparison of 3L and 5L health profiles and valuation in patients with ischemic heart diseases | Background EQ‐5D‐5L is developed from EQ‐5D‐3L to mitigate ceiling effects and improve discriminativeability. Value sets for EQ‐5D‐5L are also established using a new composite time trade‐off method (cTTO) with or without discrete choice experiment. It is not entirely clear whether or how the EQ‐5D‐5L index is more sensitive than the EQ‐5D‐3L index. Regardless of their comparative sensitivity,how the descriptive system, 3L or 5L, impacts on the sensitivity of the index score cannot be assessed with existing value sets because those we redeveloped using different valuation methods, interviewers, and respondents. Study aims (i) To compare EQ‐5D‐5L and EQ‐5D‐3L items in heart disease patients; (ii) to compare EQ‐5D‐5L and EQ‐5D‐3L in dicesusing existing value sets; (iii) to explore the effect of descriptive system on the sensitivity of EQ‐5D indices. Methods The study will piggy back on a study of 500 heart disease patients. Patients will report their health using both EQ‐5D‐5L and EQ‐5D‐3L questionnaires. In addition, patients with be asked to valueten EQ‐5D‐5L and six EQ‐5D‐3L health states, in a random order, using the cTTO tasks administered by EQ‐VT. Differences in self‐reported EQ‐5D‐5L and EQ‐5D‐3L profiles and indices will be assessed by examining their association with each other and clinical variables using appropriate statistical models. Existing 3L and 5L value sets including those derived from the general UK population will be used. Experimental 5L and 3L value sets based on the preferences of the heart disease patients in this study will be developed in order to study the effect of the 3L and 5L descriptive systems on the sensitivity of the utility‐based indices. | Nan Luo | Descriptive Systems | 10000 | Completed | 2017 | |
| 20180320 | User-friendly tool to optimize (D)efficient DCE duration designs for the EQ-5D-Y / EQ-5D-5L. | Objectives:This article explains how to optimize Bayesian D-efficient discrete choice experiment (DCE) designs for theestimation of quality-adjusted life year (QALY) tariffs that are unconfounded by respondents’time preferences.Methods:The calculation of Bayesian D-errors is explained for DCE designs that allow for the disentanglement of respondents’time and health-state preferences. Time preferences are modelled via an exponential, hyperbolic, or power discount functionand the performance of the proposed DCE designs is compared with that of several conventional DCE designs that do not takenonlinear time preferences into account.Results:Based on the achieved D-error, asymptotic standard error, and estimated sample size to obtain statistically significantestimates of the discount rate parameters, the proposed designs outperform the conventional DCE designs.Conclusions:We recommend that applied researchers use appropriately optimized DCE designs for the estimation of QALYtariffs that are corrected for time preferences. The TPC-QALY software package that accompanies this article makes therecommended designs easily accessible for health-state valuation researchers.Keywords:discrete choice experiment, health state valuation, quality-adjusted life year, time preferences.VALUE HEALTH. 2019 | Marcel Jonker | Valuation | 15750 | Completed | 2019 | |
| 2014200 | Development of a proxy English Health-Related Quality of Life (HRQoL) instrument for children under six years of age, derived from the EQ-5D-Y: Part 1 | Background and Aim: Although the EQ-5D-Y was developed for self-report by children over the age of seven years, there is no instrument in the EuroQoL stable developed and validated specifically for younger children and infants. In order to investigate the need for the development of such an instrument, a systematic review of Health Related Quality of Life (HRQoL) measures for children under seven years of age was undertaken. The COSMIN (1)checklist for reviewing outcome measures was used as a framework.Study Design:The search strategy was based on published literature and expert knowledge. A data abstraction form was developed, following COSMIN (2). Information on bibliographic details, instrument development, completion by self/proxy, domains, number of items, response options, frame of reference, recall period, scoring and psychometric results pertaining to validation, reliability and practicality was recorded. Results:Fifteen generic HRQoL measures were identified. The development procedure for most of the instruments was based on the existing literature and expert opinion and all authors claimed to have taken age-appropriateness into account. Many of the measures were extended for proxy use to five years of age but few were developed specifically for children under the age of seven years. Domains were similar across measures and in accord with WHO’s definition of health and components of the HRQoL namely: physical; emotional; social and cognitive. Content validity was judged from the developmental process of the measure. Face validity was reported based on results of the pilot or field testing during the development process. Despite therequirements of FDA guidelines for proxy measures, observable characteristics of the domains were poorly defined and no measure was based purely on observable behaviour. The majority of measures rely on either domain scoring and/or a single summary score.The scoring algorithms for the measures are generally poorly defined. The criterion validity of most of the instruments was established through comparison to a previously developed and validated HRQoL measure. The divergent validity was generally examinedby confirming differences between known-groups. The reliability as measured by internal consistency was reported α≥0.70 for only eight of the measures. Conclusion:There is a need to develop a comprehensive generic, preference-based HRQoL measure for children under the age of seven years as none of the measures reviewed satisfy all of the criteria. The specific aspects that were deficient included: a) The development procedure did not include focus groups of parents of children in the age group to establish the age appropriate behaviour which would represent the HRQoL construct and b) observable domains were not explicitly included and observable behaviour that would inform proxy report was not defined; c) the scoring systems were not necessarily psychometrically sound and the scoring algorithms, where developed, where opaque. There is a lack of preference based measures and several of the instruments were lengthy and valuation sets would be difficult to develop. There may be a need to develop more thanone instrument to measure HRQoL in different age categories for children under the age of seven years. | Jennifer Jelsma | Youth | 15000 | Completed | 2014 | |
| 20180520 | Psychometric assessment of the E-QALY item pool in the United States | This proposal is a subproject related to the psychometric validation phase of The ‘Extending the QALY’ collaboration between the EuroQol group and UK based researchers, centrally coordinated by Sheffield University, that aims to develop a broad measure of quality of life for use in economic evaluations across health and social care. The project consists of six stages, and this proposal concerns the fourth stage. The overall aim of this study is to test the psychometric validity of the E-QALY item pool using US data. We will collect online data from a sample of 500 US cancer patientsusing a range of instruments relevant to health and social care. This includes the E-QALY item pool measures of health-related quality of life (EQ-5D-5LandPROMIS-29),and measures of wellbeing (WEMWBS). We will conduct psychometric analysis similar to that being conducted by the UK E-QALY team to better understand the generalizability of the findings of the UK to other predominant ly English speaking countries to support the item reduction and selection process. As health care policy and reimbursement in the USA can have global ramifications, it is useful to include the USA in the measure development process which may enhance the acceptability of the instrument in the future. | Simon Pickard | EQ-HWB | 18400 | Completed | 2019 | |
| 20180510 | Valuing the EQ-5D-Y-3L in Germany, Spain and Slovenia | There is an increasing interest in understanding thevariations in health state preferences derived fromadolescents or from adults with the perspective of a child.This project will(1) explore those differences in health preferences using the EQ-5D-Y-3Land (2) develop a value set for the EQ-5D-Y-3L for Germany, Spain and Slovenia.Health state preferences from adolescentsvaluing health states for themselvesand from adultsvaluingchildren’shealth stateswill be assessed to compare thoseand to fill the gap of the non-existence of value sets for the EQ-5D-Y-3L.700 adolescents and 1000adults will be includedin Slovenia, Spain and Germany, each. In thefirst sub-study, an online survey will be used to obtain health state preferencesby discrete choice experiments (DCE)The proposal Version 26JAN2017Page 2follows the EuroQol Group’s valuation protocol for the EQ-5D-Y-3L. To anchor the DCE latent scale values derived for the EQ-5D-Y-3Lhealthstates, the data will be combined with those of a time trade-off (TTO)survey.TheTTO values will be used to rescale the latent scale valuesfrom the DCE study. Therefore, a second sub-study will be conducted using computer assisted personal interviews (CAPI) to ask adult respondents to value health states using TTO tasks. This decision of using the TTO method to anchor the DCE values is in accordance with the agreed valuation protocol for the EQ-5D-Y-3L. Therefore, a sample of 200 respondents will be recruitedin each country | Wolfgang Greiner | Valuation, Youth | 95840 | Completed | 2019 | |
| 20191190 | HRQoL and Health Literacy among informal caregivers to persons with dementia | As part of a larger project financed by the Norwegian Research Council, PATHWAYS, on health and ageing, PhD candidate Kristin Häikiö has conducted a survey of ~200 informal carers for elderly people with dementia. Aside from demographics and other background variables regarding both careperson and the one receiving care, the survey was trained upon health literacy, time spent on various caring tasks, perceived carer burden(Relative Stress Scale), and quality of life(EQ-5D-5L). Preliminary analyses (regression models predicting utility scores using health literacy, including relevant background variables) indicate that health literacy is a statistically significant predictor of HRQoL as measured by the EQ-5D-5L among carepersons. This material has gone unused as of yet, the thesis focused elsewhere. As the PhD project funding is out in early2020, and Häikiöis set to deliver her thesis, there is risk that it will not be published upon. The proposal is for funding of three weeks of extra time for the PhD student to write up a paper on the findings regarding health literacy and utility scores, and two days of supervision on the interpretation and use of EQ-5D data. | Kim Rand | Others | 6800 | Completed | 2020 | |
| 20170130 | Scoring Methods for the EQ-5D instrument: theoretical background and empirical analyses (revised application) | Introduction: The EQ-5D is a preference-based measure developed for economic analysis of health interventions. Yet, most of its applications are in other settings, where preference-based approaches have no more merit than other scoring approaches. In this study, we explore reflective and formative approaches to summarize the EQ-5D-5L for non-economic applications. Methods: We examined: 1) reflective approach modelling EQ-5D-5L items on one latent factor using confirmatory factor analyses (CFA) and item response theory (IRT); 2) formative approach conceptualizing the items as causal and health scales as reflective using Multiple Indicators, Multiple Causes (“external” MIMIC) models; and 3) hybrid approach which modeled some EQ-5D-5L items as formative and others as reflective indicators of one latent factor (“internal” MIMIC). Nine datasets [population (4), patient (3), mix (2)] containing the EQ-5D-5L were analyzed to examine the robustness of the results. Results: CFA showed all items loaded well (0.7 to <0.95) except for AD (loadings 0.192 to 0.619, excluding one outlier). The best fitting external MIMIC modelled the HUI3 and SF-36 subscales on two factors (RMSEA=0.147). The best fitting internal MIMIC model defined MO, AD and, PD as causal, and SC and UA reflective indicators, confirming the findings of Gamst-Klaussen et al. 2017. Conclusion: Neither the reflective or formative approach was best – the AD and SC dimensions were problematic, respectively. A hybrid model to scoring the EQ-5D-5L is suggested for future research. Most datasets analyzed were from Western, developed countries; despite similar findings across datasets, the results may not be generalizable to all countries. | thomas kohlmann | Valuation | 37500 | Completed | 2017 | 2018 |
| 20190080R1 | Correcting bias in time trade-off within the EuroQol Valuation Technology | Background: Time trade-off (TTO) valuation of EQ-5D-Y states by EuroQol will be performed using the perspective of a 10-year old child. However, TTO valuation is affected by several respondent characteristic (e.g. having children and subjective life expectancies) and time preference and loss aversion may lead to bias in TTO. We propose to study whether these effects are affected by movingthe perspective in TTO from adults valuing health states for themselves to that of a hypothetical child.Aim: To address existing questions faced by EuroQol andbridge the gap between earlier work onvariance andbias in TTO and EQ-VT, the aim of our proposal is to: i)Study to what extent TTO weights for EQ-5D-Y elicited in accordance with EQ-VT are affected by respondent characteristics suggested to lead to bias or variance in earlier work. ii)Compare the effect of such characteristics between valuation with a child or adult perspective.iii)Investigate the feasibility and validity of correcting for loss aversion and time preference in both perspectives.Methods:A general public sample will complete one of two EQ-5D-Y valuation tasks, where health states are either described to apply to themselves (self-perspective) or to a 10-year old child (child-perspective). Afterwards, demographics are collected and matched time preferences and loss aversion are elicited (i.e. for own life years or those of a child). The effects of (correcting for) these factors are compared between the two perspectives, and an extended feedback module is used to study validity of corrections. | Stefan Lipman | Valuation | 46750 | Completed | 2019 | |
| 2014160 | Comparing valuation of the EQ-5D-Y and the EQ-5D-3L: The impact of wording and perspective | Introduction: Since the launch of the EQ-5D-Youth (EQ-5D-Y) in 2010, the instrument has been included in an increasing number of studiesthat consider health states for children and adolescents,with an accompanying demand for value sets. Given the similarities between the EQ-5D-Y and the EQ-5D-3L and that more than 20 value sets are currently available for the EQ-5D-3L, a natural starting point is to evaluate whether state valuations differ whenparticipants complete valuation tasks with different combinations of instruments and perspectivesadopted. Methods: The studywasconducted in Germany, Netherlands, Spain, and the UK. The valuation interview startedwith background questions, followed bya rankingtask, composite TTO (cTTO)tasks (9 states) and discrete choice experiments with dead (DCE+dead)tasks (9 pairs of health states). Debriefing questions were used to elicit respondents’opinions on the tasks and the perspectives they were asked to take. Seventeenhealth states were includedand divided in two blocks.Half of the respondentsreceivedthehealth states from theEQ-5D-Ydescriptive system, the other half valued health states based on the EQ-5D-3L. These two arms were further randomised into two groups that were asked to value health states either as if they were experienced by“themselves” (adult perspective) or by“a 10 year old child” (child perspective),obtaining four study groups.Descriptive analysis was used to examinesample background characteristics andcTTO and DCEresponses. 2-way MANOVAanalysis was used to compare cTTO responses and post-hoc comparisons wereadjusted using Bonferronicorrection. OLS regression was performed using N3 model. All results werepresented by the four arms of the study design. Results:The total sample consisted of 805 members of the adult general population, spread equally across the participating countries. Background characteristicswere broadly similaramong the four study arms. 2-way MANOVA analysis found a significant effect in the interaction between the instrument and theperspective for the observed cTTO values. Post-hoc comparisons after Bonferronicorrection confirmed that the wording affect values only on the EQ-5D-3L version, the wording affect values only for adults perspective and when crossing EQ-5D-3L for adults and EQ-5D-Y for child, the values are also affected. Estimated utilities for the pits state(33333)were different with the lowest estimated in the EQ-5D-3L and adult perspective (-0.309), followed by the EQ-5D-3L and child perspective (-0.227), then by EQ-5D-Y and adult perspective (-0.171) and finally for the EQ-5D-Y and child perspective (-0.151).Conclusion:Preliminary results from this study identified an interaction between the wording of the descriptive system valued (EQ-5D-3L versus EQ-5D-Y) and perspective (adult versus child) influencing values given to health states. Such outcome suggests that perspective and wording cannot be considered in isolation. The extent of the impact of this interaction on the values still needs to bedetermined in further analyses. | Wolfgang Greiner | Youth | 167070 | Completed | 2014 | |
| 20190990 | Regional differences in health-related quality of life in England: EQ-5D in national surveys of the general population | This research investigates regional differences in health-related quality of life (HRQoL) as described by EQ-5D in England over a 20 year period.Data will be extracted from the Health Survey forEngland (HSE), an annual survey of nationally representative residents in England that between 1996 and 2013 periodically included EQ-5D,supplemented by data from other national surveys, including ONS Omnibus and the General Household Survey (GHS) which also included EQ-5D. All surveys used essentially similar sampling methods and in total provide EQ-5D data on some 150,000 respondents. Regions will be classified in terms of the degree of urbanisation (village / town / urban), Government Office (North East / North West / Yorkshire / East Midlands / West Midlands / East/ London / South West / South East) and IMD quintile score (from least deprived to most deprived). Descriptive analyses by region will be conducted. Multiple regression models will be constructed to predict HRQoL (percentages of respondents reporting problems in each dimension of EQ-5D, VAS scores and utility scores) in separate regions and in different years. | Zhuxin Mao | Populations and Health Systems | 8800 | Completed | 2020 | |
| 2014140 | Quantification of EQ-5D health-state values by scaling similarity data (studies 1 and 2) | Objective: It is assumed that the 'Q' in Quality-adjusted life-years (QALYs) is unidimensional. However, this assumption has not been sufficiently tested which is what the current study aims to do. It is important to note that the response task might influence the dimensionality of the data. The current study should be considered a pilot study using a novel methodology to test the dimensionality of rank-ordered health states.Methods:The rank data of 2997 respondents from the Measurement and Valuation of Health (MVH) study was exploded into paired comparison data. Pairwise choice probabilities were transformed into proximity data by |,5.0ijijPwhere ijis the dissimilarity between health states iand jand ijPisthe probability of health state ibeing preferred to health state j. The proximity data were entered into a similarity matrix. Subsequently, this matrix scaled with metric and non-metric multidimensional PROXSCAL algorithms in SPSS in 1, 2, and 3 dimensions. Dimensional fit was assessed usinginterpretability,stress measures,and scree plots.Results:Based on interpretability the unidimensional solution had the best fit. State '33333' was scaled at the end of the continuum while all the states with a single attribute level at level 2 were scaled at the other end of the continuum. In terms of stress and the scree plot a two-dimensional solution would indicate a meaningful improvement over the unidimensional solution. However, the interpretability was lower compared to the unidimensional solutions. The three-dimensional solutions did not decrease stress measures meaningfully, nor increase the interpretability. Discussion: Based on the current findings we can infer that EQ-5D-3L rank-based data is scaled best unidimensionally, even though statistical fit leaves room for improvement. Other types of data could be put through the protocol of the current study to test the assumption of unidimensionality as well. The time trade-off data would seem like a prima candidate for this type of follow-up research. | Alexander Arons | Valuation | 56250 | Completed | 2014 | |
| 2014090 | Prevention of misspecification of the EuroQol tariff through optimal choices on design and analysis. An empirical and simulation based analysis using existing datasets. | Introduction. The EQ-5D valuation approach classifies health into profiles, which subsequently receive a unique value from an existing value function. Such a value function requires: (1) a sample of respondents valuing a subset of profiles, covering a small part of all possible profiles, <5% for EQ-5D-5L; (2) modelling of the data, allowing for interpolation of values of the remaining profiles. This is inevitable as no respondent can directly value all states (to create a 'saturated' dataset). Multiple choices on design and analysis in valuation studies are therefore present, where optimality (lack of misspecification) is determined by sample size, health state design, and the role of individual effects on the values and the use of the scale. We developed a simulation-analysis tool (SAT), which allows for finding an optimal set of choices. Methods. VAS data from the multinational EQ-5D-5L pilot valuation studies were used to derive a main effects model, including a random intercept for all individuals, as a prior for all simulations. The resulting coefficients (20 dummies, 1 intercept, variance contribution of the random individual effect (here 20%)) were input parameters for SAT. SAT consists of: I) a generator of a defined sample of saturated data records of hypothetical respondents; II) a tool to use any sub-selection of states to mimic a particular design; this can be repeated n times; III) a regression tool which estimates the models on the datasets resulting from I and II; IV) an analytical tool that compares the values of these regression models to the original simulated data (using a predefined part of the 3125 profiles not used in III); V) a presentation tool showing the misspecification pattern of the particular design. Design choices involved were: the numbers of respondents (200-2000), the proportion of states valued (40-800); state selection criteria (random, mild/top, severe/bottom, flat, stressed).Misspecification was expressed as mean absolute error (MAE). Scale-dependence of misspecification (top, bottom of VAS scale) was explored.Results. With 1000 respondents and 120 states, MAE was around 0.47, independent from selection (mild, severe, etc.). Using 40 states increased MAE (0.60), more in case of mild state selection (0.65). Increasing beyond 120 states did not significantly improve results. Over the range of 200-2000 respondents, the mean MAE decreased almost according to the inverse square root of the sample (MAE with n=2000 about 0.33). The MAE consistently differs along the VAS scale, being highest on top; this scale dependent misspecification is to a small degree dependent on set selection, and disappears if the number of states or number of respondents is high.Conclusions. If the underlying value function is adequately represented by a main effects model, then misspecification primarily depends on the number of respondents, as long as the number of states is around 80 - 120. The impact of set type is small, although mild selections performed worse. To avoid scale dependent heterogeneity of MAE, 500 seems the minimal number of respondents. We hypothesize that the 20% individual variance is the hitherto underestimated factor in misspecification, where designs could be more efficient (lower n) if the model contains a specified individual component rather than a random intercept. SAT is an extremely powerful and valuable tool to guide design choices in valuation studies. | Gouke Bonsel | Valuation | 75000 | Completed | 2014 | |
| 2016670 | Measuring health-related quality of life in trauma patients: what is the added value of extending the EQ-5D3L and the EQ-5D5L with a cognitive domain? | IntroductionThe EQ-5D is frequently used to understand the development of health-related quality of life (HRQL) following injury. However, the lack of a cognition dimension is generally felt as disadvantageous as many injuries involve cognitive effects. We aimed to assess the added value of a cognitive dimension in a cohort of injury patients.MethodsWe analyzed EQ-5D-3L extended with cognition (EQ-5D + C) dimension responses of 5346 adult injury patients. We studied dimension dependency, assessed the additional effect of the cognitive dimension on the EQ-VAS, and, using the EQ-VAS as a dependent variable, determined the impact of EQ-5D and EQ-5D + C attributes in multivariate regression analyses.ResultsExtreme cognitive problems combined with no problems on other dimensions are uncommon, whereas severe prob-lems on other dimensions frequently occur without cognitive problems. The EQ-VAS significantly decreased when cognitive problems emerged. Univariate regression analyses indicated that all EQ-5D + C dimensions were significantly associated with the EQ-VAS. Exploratory analyses showed that using any set of five of the six EQ-5D + C dimensions resulted in almost identical explained variance, and adding the remaining 6th dimension resulted in a similar additional impact.ConclusionsThe addition of the cognition dimension increased the explanatory power of the EQ-5D-3L. Although the increase in explanatory power was relatively small after the cognition dimension was added, the decrease of HRQoL (meas-ured with the EQ-VAS) resulting from cognitive problems was comparable to the decreases resulting from other EQ-5D dimensions.Keywords | Gouke Bonsel | Descriptive Systems | 79750 | Completed | 2017 | 2019 |
| 2016480 | Analysis of EQ-5D profile data and EQ VAS scores across patient groups in the Swedish National Quality Registers and use in developing alternative ways of summarizing EQ-5D data. | This proposalaimsto investigate the evidence that the same EQ-5D state is valued differently across patient groups who experience that state because of different underlying conditions. Subsequently, we explore alternative ways of summarising EQ-5D profile data to reflect patients ́ views and experience of health. Swedish decision makers (its HTA body, TLV) prefer weightings based on the evaluations of the persons experiencing the health condition in question before calculations from an average of a population estimating a condition depicted for it. This raises the question of which patients’ preferences are relevant – patients’ overall or specific patients experiencing the illness under consideration, or the preferences of an individual patient? Little is known about how these experience-based values differ, which is the main topic of this proposal. Specifically we address the following research questions: •How do EQ-5D profile data differ across patient groups? •How do EQ VAS scores for EQ-5D profiles differ across patient groups? •To which extent does the importance of the dimensions, in explaining the EQ VAS scores, vary depending on the patients’ particular condition and experience of health? •How does the Swedish experience-based EQ VAS value set, estimated from models using self-reported EQ-5D profile data and EQ VAS scores performs in different patient groups?Hence, it is important to explore how patients’ preferences about HRQoL differ within and between disease areas. Swedish National Quality Registers data offers an opportunity to explore these questions. We will select 7-8 registers that represent diseases that affect different dimensions of health. | Kristina Burström | Valuation | 39100 | Completed | 2016 | |
| 2016470 | US valuation study of the EQ-5D-5L | Objective: To derive a value set for the EQ-5D-5L from the preferences of the United States (US)adult general population based on the standardized protocol developed by the EuroQol Group. Methods: Respondents from the US adult population were quota sampled based on age, gender, ethnicity, and race. Trained interviewers guided participants in completing composite time trade-off (cTTO) and discrete choice experiment (DCE) tasks using the EuroQol Valuation Technology software and routine quality control measures. Data were modeled using random effects linear regression and Tobit for cTTO data, conditional logit for DCE data, and a hybrid model that combined cTTO and DCE data. Model performance was compared based on statistical significance and logical ordering of coefficients, goodness-of-fit, and theoretical considerations.Results: Of 1,134 respondents, 1,102 provided valid responses on the basis of the quality control criteria and interviewer judgement. The distribution of age, sex, race, ethnicity, education, chronic conditions, and general health status were similar to the 2015 US Census. The hybrid model was selected as the preferred model to generate the value set, which provided logically ordered, statistically significant coefficients for each of the dimensional levels. Values ranged from -0.699 (55555) to 1 (11111), with 23.5% of all predicted health states scoring < 0 (i.e., worse-than-dead). Conclusions: We applied the official, consensus-based international EuroQol valuation protocol in a sample representative of the US population to derive a TTO/DCE-based value set for the EQ-5D-5L that can be used for economic evaluations and decision-making in US health systems. As we utilized an internationally established protocol, the US-based value set can also facilitate cross-country comparisons. | Simon Pickard | Valuation | 283000 | Completed | 2017 | |
| 2014020 | Supplementary funding 5L value set study England: LSE | Nancy Devlin | Valuation | 57794 | Completed | 2014 | ||
| 2015200 | Feasibility and application of the EQ-5D in elderly | Due to the aging population and changes in the morbidity structure, health-related quality of life (HRQoL) measurement in the elderly gets more relevant. However, special characteristics of the elderly population, such as impaired cognitive functioning or visual impairments, seem to make an accurate measurement of HRQoL challenging. The EQ-5D is a widely used generic preference-based instrument, which is psychometrically sound with the general population, but it may not be suitable for use in elderly. Therefore, we need to examine whether the EQ-5D is a feasible measure applicable for the use in the elderly population. Hence, this study aims to systematically identify and analyse the available literature which examined feasibility properties of the EQ-5D specifically for the elderly. We conducted a systematic search in the PubMed, PsycInfo and the EuroQol database to identify articles published in English or German without any restrictions to the publication date. Studies were included, if (1) the minimum age of the sample was reported and included participants were at least 65 years old and (2) HRQoL as a primary or secondary outcome was measured by the EQ-5D. Two independent reviewers conducted the literature sifting process. We extracted the sample and study characteristics, including outcomes referring to the feasibility of the EQ-5D as a measure of HRQoL in the elderly in a qualitative synthesis. We identified 15 studies reporting information on feasibility based on four criteria: missing values, completion rates, time required to complete the instrument and -more broadly –qualitative statements referring to the completion of the measure. Only two of the included studies examined the EQ-5D-5L, the remaining 13 reported on the 3L version. Our findings suggest that missing values or comprehension problems (especially with the VAS) are slightly more prevalent in older age groups. However, these aspects are well within an acceptable range and still considerably lower than in other measures such as the SF-36 or ICECAP-O, which are frequently used in the elderly. Furthermore, older respondents seem to have a higher propensity of requiring some degree of assistance or even an interviewer-based approach, but still on a quite low level.Overall, evidence from the reviewed literature indicates that the EQ-5D is a comprehensible and short measure, which is also highly applicable in older respondents. The EQ-5D is a well-established instrument used to measure and evaluate health-related quality of life. Both versions the EQ-5D-3L and 5L demonstrated good measurement properties across many conditions and populations, strengthening the EQ-5D’s role as a basis for calculating quality-adjusted life years for use in clinical and economic evaluations. In the light of an aging population, the EQ-5D also showed adequate measurement properties in the elderly population. When evaluating healthcare services for elderly people, the measure should also be feasible and applicable to the use in an elderly population. The ease of applying the EQ-5D in an elderly sample may have an impact on data quality given that feasibility issues increase the risk of measurement error, i.e. missing responses ormulti-coded answers, or even complete study withdrawal. Yet, little is known about these properties of the EQ-5D in this population. This study aims to examine the feasibility of the EQ-5D-3L and 5L in the elderly general population by exploring the impact of age on the completion of the EQ-5D instruments further controlling for gender and the presence of long-term conditions. A prerequisite for this analysis is the availability of uncleansed, self-report EQ-5D health data from the general population. We pool across five waves of secondary datasets from the GP Patient Survey from years 2012, 2016 and 2017, where respondents self-report their health in either EQ-5D-3L or 5L depending on the wave of fieldwork. First, descriptive analysis was undertaken to analyse the distribution and proportion of missing values and completion rates stratified by age and EQ-5D version. Secondly, logistic regression models were specified to quantify the impact of age, gender and potential long-term conditions on the completion of each of the EQ-5D instruments. The total sample comprises around 4.36 million observations, of which 2.88 million respondents report their health in 5L and 1.47 million in 3L, respectively. Respondents being 65 years and above have marginally more missing values in each dimension compared to younger respondents. The highest share was observed for the oldest age group in the dimension anxiety/depression (3L 9.1% vs. 5L 7.6%), otherwise being below 5%. Consequently, completion rates (observed and predicted) decreased with age and at a higher rate after the age of 64. Evidence from our study suggests that both the EQ-5D-3L and 5L have good feasibility properties. The proportion of missing values is acceptably low across all age groups but compares more favourably for the 5LGiven the ongoing ageing trend in European countries, we expect a major increase in the proportion of elderly people with a corresponding increase in long-term care needs. While in Europe the majority of long-term care is provided by informal caregivers in a home-based setting, little is known about the impact of different care settings on the (health-related) quality of life (HRQoL) of care-dependents. Hence, this study aims to assess differences in (HR)QoL between elderly respondents receiving informal care and elderly respondents receiving formal care based on EQ-5D-3L, 5L and the age-specific WHOQOL-old. In addition to that, we aim to add to the scarce evidence of the EQ-5D’s feasibility and test-retest properties in the elderly population. Our findings suggest that differences in (HR)QoL between different care settings seem indeed to be prevalent, pointing towards higher levels of reported (HR)QoL in recipients of formal care and those in a nursing homes. Generally, the EQ-5D shows good properties in terms of response distribution, feasibility and test-retest statistics and this is irrespective of the version. Moreover, we conclude that using the WHOQOL-old alongside EQ-5D in this sample added further information ondifferent aspects of QoL from care-dependents.The EQ-5D is one of the most prominent instruments for the measurement and valuation of health-related quality of life. Due to its generic descriptive system it can be used to measure health across different disease areas and age groups. Given the growing demand of HRQoL data for clinical and economic appraisal targeted at the elderly age group the EQ-5D was extensively used in this population, too. Reference values are a helpful tool to facilitate comparisons against other groups. For example, to assess disease burden of patients, for researchers as baseline or control measurement or to determine the effects of treatments. In order to generate reference values for the German elderly population (≥65 years), we analysed a sub-set of data from the German valuation study to present benchmark values for mean utilities and VAS values as well as with regard to the response distribution stratified by age and gender. Instead of using only two age groups to characterise the elderly population, we used four age groups (65-69, 70-74, 75-79 and >79 years) to facilitate a more detailed examination of age-related HRQoL. Generally, our findings correspond well to earlier findings from a large German population norm study. Nonetheless, a more detailed provision of reference values for the elderly population seems helpful given that HRQoL in the oldest old is more volatile and differs from the young elderly, while the sought age categorisation of conventional population norms studies seems to mask these differences. Our findings may help researchers, clinicians and health economists to compare their results with those of the German general elderly population. | Wolfgang Greiner | Populations and Health Systems | 154900 | Completed | 2015 | |
| 2014010 | Valuing EQ-5D-5L health states using EQ-VT: Does the Life A health description and/or the ordering of dimensions matter? | Objectives: Studies to produce utility values for the EQ-5D-5L instrument are ongoing internationally. These include the valuation of 10 EQ-5D-5L health states using thecompositetime trade-off (TTO) method. In some of the studies carried out to date, relatively low mean TTO values formild health states have been observed. It is hypothesised that this is because the health states under evaluation are being compared to “full health”, whereas in previous studies they were compared to 11111 (the “best” health state in the descriptive system). The objective is to assess differences in TTO valuations using two different comparators (full health and 11111).Methods: Preferences for EQ-5D-5L health states were elicited from a broadly representative sample of the UK general public. TTO data were collected using computer-assisted personal interviews, carried out in respondents’ homes. Respondents were randomly allocated to one of two arms: in arm 1 the comparator health state was full health; in arm 2 the comparator health state was 11111. After completing 10 TTO valuations, respondents were asked follow-up questions which sought to examine their interpretations of the term “full health”.Results: Interviews with 443 respondents were completed between May and October 2014. We do not observe a statistically significant difference in mean values for the mild health states across arms. The two arms produced data of similar quality. We observe evidence of interviewer effects.Health state 11111 was given a value of 1 by 98.2% of the respondents who valued it; yet the majority of respondents who self-reported as being in 11111 did not consider themselves to be in “best imaginable health”. Vision and energywere mentioned by respondents as examples of important aspects of health not covered by the existing dimensions.Conclusions:EQ-5D-5Lvalues elicited using the composite TTO approach are not greatly affected by whether full health or 11111 is used as the comparator health state. | Brendan Mulhern | Valuation | 89950 | Completed | 2014 | |
| 2013320 | Reintroduction of the ranking task in EQ-5D valuation. Improved data quality and reduced level of inconsistencies? | Background:The EuroQol group has observed several problematicissues related to the quality of valuation data collected using the EQ-VT system. The objective of this study was to test if reintroducing a ranking task prior to TTO valuation could help to reduce inconsistencies and improve the quality of thedata in future valuation studies.Method:The study was performed in Spain (Canary Island). Respondents were assigned to three different study arms. Thecontrol group (Arm 1) wasthe current EQ-VT version, which did not include a ranking task. The second arm (Arm 2)wasthe EQ-VT preceded by a ranking task similar to the one used in the MVH protocol, in which the respondents wereasked to rank the target health states using physical cards. The last arm (Arm 3)wassimilar to the second, with ranking prior to the EQ-VT. Unlike the second branch, the ranked states remainedvisible through the Composite TTO (C-TTO) tasks, and the C-TTO states order weredetermined by the rank order. We usedjust one specific block of 10 C-TTO states. A total sample size of 600(~200 per experimental arm) respondentswererandomly selected with representatives in term of age and gender ofCanary Islands population. All interviews wereperformed face to face. The interviewers performed similar number of interviews in the different experimental branches. We comparedthe number of C-TTO-based inconsistencies.Results:The final sample size was 600 respondents (196, 205 and 199 for arms 1, 2 and 3 respectively). The percentages of times when the state 55555 was not valued as the worst state on C-TTO responses by study arm were 13.27%, 10.73% and 13.57% for arms 1, 2, 3 respectively. However, none of the observed differences in levels of inconsistent responses were statistically significant.Conclusions:Under the light of theseresults it does not make sense to increment the current burden of EQ-VT by adding the ranking task as it does not improve the data quality neither the spikes on C-TTO observed values distributions. | Juan M. Ramos-Goñi | Valuation | 64000 | Completed | 2014 | |
| 2013310 | Test of reference dependency in EQ-5D-5L health state valuations | Background: Health state valuations provided by patients (i.e. experienced-based preferences) and non patients are generally not the same. Ultimately, the decision of which health-state values to use is a normative one, and research into the similarities and differences of values obtained from both perspectives is generated as basis for such decision. Thus far, the discussion has largely overlooked the fact that general population samples are very heterogeneous and comprise many respondents in impaired health states. Similar as patients, these respondents have a unique vantage (or reference) point that can influence their preferences. This potential source of bias is usually not recognized and even when it is acknowledged, the empirical implications are not investigated. This study seeks to address this issue by investigating the existence and empirical relevance of health state reference dependency in health state valuations. Methods: The reference dependency hypothesis is tested in a discrete choice experiment (DCE). A Bayesian DCE design consisting of 8 sets of 24 (matched pairwise) choice tasks was used, each set providing full identification of the EQ5D parameters for individual respondents. Mixed logit models were used to estimate the utility decrements associated with the severity levels in each dimension of the EQ5D. Reference dependency was subsequently modeled relative to respondents' own (self-assessed) EQ-5O health states using 5 additional parameters. These reference dependency parameters capture, separately for each EQ5D dimension, the multiplicative increase or decrease in health state utility as a result of valuing health state levels that are better than or equal to respondents' own health. Results: The DCE was administered to a Dutch nationally representative sample of 799 respondents. The majority of respondents in our sample was in good health, reflected by the share reporting problems in any of the dimensions: 24% in MO, 4% in SC, 27% in VA, 48% in PD and 22% in AD. Modeling the respondents' choices without taking reference dependency into account produced statistically significant and logically consistent parameter estimates. When reference dependency was taken into account, statistically significant and consistent parameters estimates were obtained for all severity levels and reference dependency parameters, except for self-care (where 96% of the sample reported not to have any health problems). Our results indicate that respondents in impaired health lower than or equal to the health state levels under evaluation have, on average, approximately 30% smaller health-state decrements. Despite these differences, a correction for reference dependency did not result in a social tariff with stronger health-state decrements; in fact, the social tariffs obtained from the models with and without reference dependency are close to identical. Conclusion: The results confirm our hypothesis that reference dependency can be observed in a random sample from the general population. On the one hand, reference dependency is found to have a major impact on respondents' individual preferences. On the other hand, the limited number of respondents with health impairments does not appear to bias the social tariff as obtained from a random sample of the general population, which is reassuring evidence. | Matthijs Versteegh | Valuation | 28200 | Completed | 2013 | |
| 2013290 | Investigating the validity of values worse than dead estimated using DCE with duration | Background: DCE with duration (DCEtto) is an alternative protocol for deriving population value sets for instruments such as the EQ-5D-5L. Valuation studies of the EQ-5D-5L so far have used the EQ-VT which only included DCE without duration questions. In Canada, we sought to estimate the DCEtto by combining the EQ-VT with additional DCEtto questions. Our objectives were twofold: 1) to determine the feasibility of generating the DCEtto from this combination of EQ-VT and DCEtto questions; and 2) to further investigate the validity of the DCEtto. The latter involved comparing individual values from the conventional TTO and the DCEtto.Methods: Data from 1107respondents in the Canadian EQ-5D-5L valuation survey are used. Each respondent completed the EQ-VT (composite TTO, and DCE without duration) followed by an additional survey which included 2 DCEtto tasks. These DCEtto tasks where selected using experimental design theory whereby the DCE without duration tasks were assumed to have equal duration, and combined with the DCEtto data to create a single dataset amenable for the analysis. For our first objective we useda conditional logit modelto estimate coefficients from the combined data. For our second objective ran mixed logit models and used hierarchical bayes to estimate individual values from the DCEtto. We then compared these to the TTO values.Results: The DCEtto provided coefficients that were statistically significant and logically ordered. Values ranged from 1 to -0.71(for health state 55555). Thiscontrasted to a range of 1 to 0for the TTO, suggesting clear differences in cardinal values derived from the two different protocols. The DCEtto values were better distributed than the TTO, which for severe health states suffered from clusters of values at 1, 0.5, 0 and -1. However, there was limited consistency between severe health states between the DCEtto and TTO. Conclusions: Values for the EQ-5D-5L were successfully generated using the DCEtto by simply adding two questions to the EQ-VT. The model generated plausible values, and the model coefficients were similar to those seen in previous DCEtto studies.The DCEtto values for severe health states were lower than those generated from the conventional TTO. | Nick Bansback | Valuation | 18750 | Completed | 2014 | |
| 2013270 | Understanding participant’s responses to the EQ-VT tasks; A qualitative study | Purpose: The EuroQol-Valuation-Technology (EQVT) uses traditional time-trade-off (tTTO) for health states better than dead and lead-time-TTO (LT-TTO) for states worse than dead to elicit a value (-1.0 to +1.0) for each health state. In the Canadian EQ-5D-5L Valuation studywhich used the EQVT platform, we observed an unexpected peak in frequency of “0” values and few negative values, particularly in the range of 0 to -0.5. To better understand this finding, we soughtto explore respondents’thought processeswhile valuing a health state, andtheir understanding of the tTTO andLT-TTOexercises.Methods: Qualitative semi-structured interviewswere conducted with EQVT task respondents. Questions focused on valuations of health states as:(a) Same as dead in tTTO, (b) Worse than dead in tTTO but changed to same as dead in the LT-TTO, (c) Worse than dead in LT-TTO, and (d) Worse than dead in LT-TTO with trading off all 10 years. Data were analyzed using content and thematic analysis. Results: Mean age ofparticipants (N=70) was 40±18.1years, 60%female, and 76% Caucasian. Participantsprovided similar reasons for valuing a health state same as or worse than dead. Many participants expressed confusion about worse than dead valuations, distinction between same as andworse than dead, and the transitionfrom tTTO to LT-TTO. A few indicated that theaddition of 10 years of full health in the LT-TTO influenced their valuations.Conclusions: The transition from tTTO to LT-TTO in the EQVT wasconfusing to participants, wherebysome health state valuations around this transition appeared to be arbitrary. | Feng Xie | Valuation | 24940 | Completed | 2013 | |
| 2013280 | An Irish valuation study for the EQ-5D-5L | The objective of this study is to derive a preference valuation set for the EQ-5D-5L health states from the Irish general public, following the standard protocol for such studies developed by the EuroQol Groupand examine variations across identifiable population groups in respect of preferences. A random sample (N=1,000) from the Irish population will be asked to value a standard subset of EQ-5D-5L health states,usingcompositetime-trade-off and discrete choices, in face to face interviews. Interviews will be conducted by a small team of postgraduate researchers with background knowledge of valuation methods, and who will be trained in the interviewing process and EQ-VT software.Regression analyses will be applied to the valuations of those health states. By means of the estimated regression coefficients, which together constitute the so-called Irish value set, valuations for all possible 3,125 EQ-5D-5L health states willbe derived. This set of social health status preference valuations ensures the application of the EQ-5D-5L in cost-utility analysis for health care policy and clinical assessment in Ireland.Variations in preferences related to private health insurance status will be examined to shed light on potential differences in preferences for health. The study will provide an opportunity to investigate emergent methodological issues relating to EQ-5D-5Land Iand wewould welcome the opportunity for this study to facilitate this. | Ciaran O'Neill | Valuation | 14000 | Completed | 2014 | |
| 2014030 | A German Tariff for the EQ-5D-5L - an explorative pre-study | The objective of the approved study “A German Tariff for the EQ-5D-5L” is to derive a preference valuation set for the EQ-5D-5L health states from the German general public. Due to the results of the completed EQ-5D-5L valuation studies in five countries, it was decided to postpone the data collection in Germany and to apply funding for an experimental pre-study. So, the objective of the proposed pre-study is to test the effect of adding three modifications to the current EuroQol Valuation-Technique (EQ-VT). In the proposed study the implementation of the following three add-ons will be analysed: separate Time-Trade-Off (TTO) tasks for health states Better Than Dead (BTD) and Worse Than Dead (WTD), allow for change of TTO answers and ranking task. The study sample consists of a control group (N=100; current EQ-VT) and an intervention group (N=100; modified EQ-VT). The methodological procedure of the approved main study will be based on the results of the proposed pre-study (after consulting the Valuation Methodology Working Group [VMWG]). | Wolfgang Greiner | Valuation | 35035 | Completed | 2014 | |
| 2014060 | Separation of the BTD and WTD task in TTO | BACKGROUND: The first series of EQ-5D-5L valuation studies reported in their TTO data many inconsistent responses involving state 55555 (20%) or the mild state (10%). Mistakes at the sorting question identifying whether a state was considered better than dead (BTD) or worse than dead (WTD), strategic behavior, learning effects, interviewer effects, and ordering effects may have contributed to the inconsistency rate. AIMS: To explore if composite TTO data consistency is promoted by 1.A feedback module offering respondents the opportunity to review their responses and take the wrong ones out, if any. 2.Separation of the BTD and WTD task, moving all WTD questions to the end of the TTO task METHODS: The effect of the modifications was tested in the Netherlands and Hong Kong using a 2-arm study with a crossover design. In each country, six interviewers conducted interviews. Three started using the current EQVT, switching to the split version after 25 (the Netherlands) or 30 (Hong Kong) interviews, and back after another 25 until reaching the target 400 samples. The others started in the split version and also switched between the versions in a same manner as the previous group. We compared the study arms on consistency, interview duration, and cognitive debriefing, thereby also considering the impact of interviewer (learning) effects. The feedback module was offered to all respondents. The same effects were evaluated, but ́within subject ́. RESULTS In the Netherlands and Hong Kong respectively 404 and 403 people participated in the experiment. In the Netherlands, 17.8% of respondents provided one or more inconsistent responses. The FB module lowered this rate to 10.6% (p=0.003). In Hong Kong, 31.8% of respondents provided one or more inconsistent responses. The FB module lowered this rate to 22.3% (p=0.003). Completion of the FB module took around 2 min. About one-third of the respondents used the FB module to remove one or more responses. In total about 5% of responses was removed. In the Netherlands, the inconsistency rates were higher in the current version than in the split version, both before the FB module (19.5% vs. 16.1%, p=0.37) and after (13.2% vs. 8.0%, p=0.095). In Hong Kong, the opposite was found, both before the FB module (28.0% vs. 35.5%, p=0.107) and after (16.0% v. 28.6%, p=0.002). DISCUSSION Both the FB module and the separation of the BTD and WTD tasks improved consistency in the Netherlands, but in Hong Kong only the positive impact of the former was confirmed. | Elly Stolk | Valuation | 61750 | Completed | 2014 | |
| 2016720 | REDCap Evaluation: Instrument Construction | On 5 October 2016, Benjamin M. Craigand Juan Manuel Ramos Goñiconducted a brief evaluation of REDCap (1-week trial license) for discrete choice experiments (DCEs).Based on its findings, Arnd Jan Prause led a team to install REDCap on a virtual Unix server licensed by the EuroQol Research Foundation (https://mq-rc.codedose.com/). Installation was completed on 28 November 2016.The aim of thisfast-track proposal is to extend the evaluation by constructing two survey instruments for EQ-5D-5L valuation using DCEs (United States and Germany). This entails three steps: (1) the construction of the data dictionaries and randomization lists in English; (2) the translation of these files into German; and (3) the installation these files into REDCap. Each instrument will have three components: screener (consent, demographics), health (EQ-5D-5L and EQ VAS), and DCE (28 paired comparisons; two sets of 14 pairs).If this project is successful, we will further extend this evaluation and propose that (1) the instruments be fielded using online samples of 350 U.S. and 350 German respondents to collect 50 responses for each of the 196EQ-VT pairs (50 × 196/28 = 350); (2) that hyperlinks to the instruments be placed on the EuroQol website to aid in dissemination and feedback; (3) that an abstract on REDCap valuation be submitted to the Plenary meeting; and (4) that we visit Vanderbilt Universityto demonstrate the instrumentsand to solicit their counsel on the design. The longer term objective is to provide an alternative platform for future valuation research. | Benjamin Craig | Valuation | 11680 | Completed | 2016 | 2017 |
| 2016730 | Workshop to discuss the legitimacy, estimation, and uses of the Minimal Important Difference (MID) with EQ-5D | There is clearly muddled language used in the literature and wide variations in methodologies. Despite this, there appears to be a tendency for researchers to quote one or two key papers when justifying the use of a single “off the shelf” MID despite the variation in MIDs across patient groups (e.g.the 0.074 averagefrom Walters & Brazier, 2005). In addition, there is no evidence of any exploration of how or whether a MID could be used with the descriptive systemrather than an index; the Pareto classification of change might provide a starting point for thisfor example(Devlin, Parkin and Browne, 2010).There appears to be some evidence that MIDs are different depending on whether they are used for an improvement or a deterioration in health, although this difference does not appear to be large. There is also a clear focus on the index (and EQ-VAS to a lesser extent) but this is not necessarily appropriate given that indices are typically based on general population values. It isalsocurrentlyunclear as to how the state transition approach might fit in alongside or compare with the more common anchor-based and distribution-based methods. | Michael Herdman | Education and Outreach | 17550 | Completed | 2017 | |
| 2015470 | International Analysis of Income-related Inequity in Self-assessed Health Using the EQ-5D | not availabe | Agota Szende | Populations and Health Systems | 15000 | Completed | 2015 | 2016 |
| 2014040 | Japanese participation in the MAT-endorsed ranking task | not available | Shunya Ikeda | Valuation | 40097 | Completed | 2014 | |
| 20180030R1 | Measuring Quality of Life in the general population in Romania: an EQ5D-5L value set and population norms for Romania (QoLRO | Clear, transparent and consistent criteria for decision-makingand healthcare resource allocation have recently become the focus of many health system strategic plans across the globe. In the last few years, in Romania, several factors have converged to create a more favourable environment for the development of health technology assessment (HTA). However, some challenges still remain. This research aims to simultaneously elicit value setsand develop population norms for both EQ-5D-3L and 5L in the same sample of Romanian respondents. Amulti-stage stratified sampling procedure will be used to recruit 2,016people representative of the Romanian general population in terms of historical region, degree of urbanisation, age and sex. Data will be collected through face-to-face interviews conducted in respondents’ homes. Preferences for EQ5D3L and 5L health states will be elicited from the same respondents using composite time trade-off(cTTO)techniques. Additionally,discrete choice experiments (DCE) will be used to elicit preferences for the 5L version. Linear regression models will be used to estimate the 3L value set based on the cTTO data. A hybrid model using the data from both the cTTO and DCE will be used to estimate the 5L value set. This project will enable local expertise development, thus addressing one of the challenges highlighted as potentially hindering theeffective implementation of HTA in Romania. Additionally, it will benefit the EuroQoL Foundation by creating a new demand for EQ-5D as the instrument will be the only utility measure in Romania for which a local value setand population normswill be available. | Elena Olariu | Valuation | 4996 | Completed | 2018 | |
| 2015270 | HRQoL among patients seeking treatment for abuse of illicit substances | The project has been severely delayed due to a number of factors. First, the regulations around patient data security were changed, resulting in a long process of getting everything approved. When this was in place, co-investigator Espen Arnevik had changed his formal position, and Rand was considerably more busy than anticipated. The result was an intermittent process of writing by relay, eventually resulting in submission of a manuscript in March of 2020. Fortunately for us (unfortunately for the field of research), there has been very little in the way of publication on HRQoL in SUD patients, and the manuscript is still relevant. Main methods 178 SUD patients were administered EQ-5D-3L at treatment start. SUD patients and a general population sample in the same age range were compared in terms of reported EQ-5D-3L health states, problems by dimension, UK index values, and EQ VAS scores. We investigated specific drug dependence, mental health disorders, sex, age, and education as predictors of EQ-5D-3L values and EQ VAS scores. Anxiety/depression dimension scores were compared to Hopkins symptom Checklist (HSCL-25) scores. Main results 91.6% of the patient sample reported problems on the EQ-5D-3L, with 29.8% reporting extreme problem. Corresponding proportions from the general population sample were 39.8% and 3.0%. The most frequently reported problems were for anxiety/depression, pain/discomfort, and usual activities. Mean UK index values were .59 (SUD) and .90 (general population). Mean VAS scores were 59.9 (SUD) and 84.1/general population). Regression analyses identified phobic anxiety diagnosis and cocaine dependence as statistically significant predictors of higher EQ-5D-3L index scores. Conclusions EQ-5D may be a useful and practical instrument for monitoring HRQoL in SUD patients, though there is need to demonstrate that the (ideally -5L version) instrument is sensitive to changes, not just to overall symptom burden. | Kim Rand | Valuation | 12000 | Completed | 2015 | |
| 2013010 | States worse than Dead: Exposing the measurement properties of the Better than Dead preference method | Background: Traditionally, the valuation of health states worse than dead suffers from 2 problems: [1] the use of different elicitation methods for positive and negative values necessitating arbitrary transformations to map negative to positive values and [2] the inability to quantify that value is time dependent. The Better than Dead (BTD)-method is a health state valuation method where states with a certain duration are compared to dead. It has the potential to overcome these problems. Objectives: To test the feasibility of the BTD-method to estimate values for the EQ-5D system. Methods: A representative sample of 291 Dutch respondents (age 18-45 years) was collected. In a web-based questionnaire, preferences were elicited for a selection of 50 different health states with 6 durations between 1 and 40 years. Random effect models were used to estimate effects of socio-demographic and experimental variables, and estimate values for the EQ-5D. Test-retest reliability was assessed in 41 respondents. Results: Important determinants for better than dead were a religious life stance (OR 4.09 [2.00 - 8.36]) and educational level. The fastest respondents more often preferred scenarios to dead and had lower test-retest reliability, 0.45 vs. 0.77 and 0.84, for fast, medium and slow response times. Value estimates showed a small number of so-called maximal endurable time states. Conclusion: Valuating health states using the BTD-method is feasible and reliable. Further research should explore how the experimental setting modifies how values depend on time. | Peep Stalmeier | Valuation | 15100 | Completed | 2013 | 2013 |
| 122-RA | An exploratory study on the use of the recall period and the impact of different formats in two fluctuating conditions | The EQ-5D uses the recall period “today”. Other HRQoL measures use different recall periods e.g. 7 days, presented in different formats e.g. bold lettering and in different locations e.g. in the item labels. EQ research has focused on assessing the impact of different recall periods in different conditions. However, qualitative studies suggest respondents might often fail to account for the recall period when self-reporting their health. It is also not clear whether using different formats improves respondents use of recall periods. This study will examine these two questions in an online sample of arthritis and migraine patients. Participants will be randomized to one of 3 blocks. Participants in Block 1 will receive EQ-5D-5L versions with recall period “today” and “the last 2 weeks”, presented in the standard format. Participants in Block 2 will receive EQ-5D-5L versions with recall period “today” and “the last 2 weeks” presented in bigger, bold lettering. Participants in Block 3 will receive EQ-5D-5L versions with recall period “today” and “the last 2 weeks”, with the recall period located in the item labels. A VAS exercise will be used to investigate the degree of fluctuation of the condition in the last 2 weeks and cognitive debriefing questions will examine participants’ thought processes when answering the EQ-5D-5L with different recall periods. Paired t-tests will be used to analyse differences between recall period versions overall and Wilcoxon signed ranked test to compare at the dimensions level. Results will be interpreted based on responders health fluctuations and cognitive debriefing questions. | Aureliano Paolo Finch | Descriptive Systems | 26766 | Completed | 2020 | |
| 141-RA | Test-retest reliability of the EQ-5D-5L in the general population of the UK, Italy and the Netherlands | Background: EQ-5D-5L data of the general population is collected for multiple purposes, e.g. to monitor the health status of the general population or establish population norms. Essential for each of these purposes is that the EQ-5D-5L is reliable. Previously several studies have investigated the test-retest reliability of the EQ-5D-5L in the general population administered via an in-person interview. Whether the test-retest reliability of the EQ-5D-5L administered via a web-based survey is similar compared to the test-retest reliability of the EQ-5D-5L administered via an in-person interview remains to be investigated. Aims: The aim of this study is to assess the test-retest reliability of EQ-5D-5L administered via a web-based survey for the general population of the UK, Italy and the Netherlands. Methods: The sample consists of 1864 members of the general population (aged 18-75 years) of the UK, the Netherlands and Italy who completed the EQ-5D-5L on two consecutive occasions. We will use Gwet’s agreement coefficient (GAC) test to determine the test-retest reliability of the EQ-5D-5L dimensions and the intraclass correlation coefficient (ICC) to determine the test-retest reliability of the EQ-VAS, EQ-5D sum level score and the EQ-5D-5L index value. GAC and ICC will be assessed for the respondents of the UK, Italy and Netherlands separately and for specific subgroups within a country. Output: A paper submitted to a peer-reviewed international scientific journal that describes the test-retest reliability of the EQ-5D-5L administered via a web-based survey in multiple countries and within subgroups of a country. | Juanita Haagsma | Descriptive Systems | 15240 | Completed | 2020 | |
| 117-RA | Conceptual challenges in the valuation of health in children and adolescents | Conceptually, the valuation of health states in children raises several questions, including: 1. Source: Whose preferences should be elicited? (adults, children, both?) 2. Perspective: Whose health should be valued? (self today, self as a child, own child, hypothetical child, etc.) If a child health perspective is taken, how should the age of the child be described, if at all? 3. Methods: How should be preferences be elicited and anchored? (TTO, DCE, etc.) Are there conceptual reasons why health state selection methods in a child health valuation study should differ from those for an adult health valuation study? This proposed project aims to study key conceptual issues in the valuation of health in children. This will be done via a combination of desk research, meetings to exchange/discuss ideas, and an expert workshop. It will contribute to the current debate and support the EuroQol Group in interpreting (and potentially expanding) its research agenda in this area. While several EuroQol-funded empirical studies in this area are likely to show how the choice of approach influences the outcomes of health state valuation, they are unlikely to provide a clear indication about which approach to prefer. The question of which approach to choose would then shift from an empirical one to a normative one, and our proposed research will provide insights into how such a question can be answered. The project is intended to be a collaboration between early career researchers who are actively working on EQ-5D-Y and conceptual issues in health state valuation research. | Koonal Shah | Valuation, Youth | 44980 | Completed | 2020 | |
| 239-RA | A review of the methodologies implemented in the valuation of generic and condition-specific measures of child and adolescent health states | This research seeks to provide an up-to-date review of the methods currently being used to value child/adolescent health states. Primary objective: • To perform a comprehensive review of the methodologies implemented in the valuation of preference-based, generic and condition-specific measures of child/adolescent health Secondary objective: • To review the extent to which debrief and follow-up questions are used to understand respondents’ valuations of child/adolescent health states Strategic scoping searches will be run in the Embase and Medline electronic databases to identify valuation studies of generic and disease-specific measures of child and adolescent health. General hand-searching will also be performed to identify further studies of interest to ensure the completeness of the review. Relevant studies will be identified and selected for full-text review and data extraction. In particular, we are interested in extracting information regarding who valued the child/adolescent health states, the perspectives through which they were valued, how their preferences were elicited, and the age(s) of the children/adolescents whose health was valued. Measures will be taken to ensure the rigour of the review at each stage of the study. This research will provide the EuroQol Group with an up-to-date picture of the methodologies that have been implemented in the valuation of generic and disease-specific measures of child and adolescent health states, the results of which will inform future versions of the EQ-5D-Y valuation protocol. | Andrew Lenny | Valuation, Youth | 14840 | Completed | 2021 | |
| 2013250 | Examining interviewer performance in the Dutch EQVT studies | Background:TheDutch EQ-5D-5L valuation studywas one of the first applications of the new protocol for EQ-5D-5L valuation studies. To contribute information on performance of the protocol, a subsample of the face-to-face interviews with respondents was recorded to evaluate interviewers’ protocol compliance and identify possible issues with the protocol. Methods:Video recordings of 157out of the 1003 participants in the Dutch EQ-5D-5L valuation study were available for analyses containing screen captures, mouse movements, and sound recordings of interviewer and respondent conversations.These interviews had been completed by 6 different interviewers, three of whom had substantial prior experience with conducting TTO interviews. We developeda protocol adherence checklist formultiple interviewer and respondent performance indicators. These indicators were identified based on a subset (n=20) of the 157interviews as well as direct input from a subset of the interviewers. Subsequently all videos were scoredusing the checklist. Results:There were significant differences between interviewers on several of the performance indicators in both the introduction to the composite time trade-off task(cTTO)as well as during the valuation of health states.The differences were not associated with particularresponse patterns. Interviewers were consistent in describing the 'wheelchair example' and explaining the cTTO set-up; they were inconsistent in switching to the worse-than-dead task, and how they handled respondent mistakes.Amongst the novice interviewers, one had persistent problems with the transition to the worse than dead part of the cTTO interview.Generally the experienced interviewers followed the protocol more closely.Discussion:We obtained insight into the performance of interviewers during elicitation of health state preferences using the composite time trade-offtask.The differences between interviewers did not appear to directly affect responses in a systematic way. | Alexander Arons | Valuation | 39375 | Completed | 2014 | |
| 140-RA | Assessing regional variations in the impact of COVID-19 on quality of life as a function of regional social isolation controls in the U.S. | Background: Many public health officials and organizations have advocated for population-wide social isolation controls (SICs) to help slow the spread of novel Coronavirus Disease 2019 (COVID-19). However, SICs may also cause significant reductions in quality-of-life as individuals are restricted from going about their normal daily routines or usual activities. There is evidence suggesting quarantines and extended periods of social isolation have a detrimental effect on mental and physical health. From intrapersonal feelings of anxiety and depression to interpersonal violence and domestic abuse, social isolation controls (SICs) are likely to have unintended consequences on the health and quality of life as the population remains in lockdown. Study Aims: This study aims to characterize the regional variation in COVID-19’s impact on quality-of-life in the U.S., with focus on the effects of region-specific SIC policies. Methods: Quality-of-life data will be taken from EQ Project 84-2020RA, a longitudinal panel survey funded by the EuroQoL group in April 2020. Information on the specific social isolation policies enacted by U.S. states will be collected from the Kaiser Family Foundation’s online repository. Precise social distancing data will be used to capture the true effects of region-specific policies. We will fit a partial proportional odds model with fixed effects to estimate the change in EQ-5D-5L scores within regions as a function of the change in SIC policy and social distancing, and employ a difference-in-difference approach, compare changes between regions. | Nadine Zawadzkli | Populations and Health Systems | 30740 | Completed | 2020 | |
| 152-RA | Head-to-head comparison of the EQ-5D-3L and EQ-5D-5L: Psychometric properties in Dementia | **Background:** Several studies demonstrated the advantages of the EQ-5D-5L over its 3-level version as a preference-based summary measure of health-related quality of life (HRQoL). However, assessing HRQoL in cognitively impaired patients poses several challenges due to the missing intellectual capacity, which could be much more challenging using five instead of three levels. **Aim of research:** To assess the psychometric properties of both self reported and proxy-reported EQ-5D-5L in comparison to the EQ-5D-3L in cognitively impaired patients living with dementia. **Proposed methods:** The analysis will be based on an already ongoing interventional study conducted in German primary care. EQ-5D-3L, EQ-5D-5L, and Quality of Life in Alzheimer´s Diseases are assessed via interviews as self- and proxy-ratings by caregivers. The EQ-5D-3L and 5L will be evaluated in terms of acceptability, agreement, ceiling effects, redistribution properties, inconsistency, informativity (Shannon and Shannon Evenness indices), convergent and discriminative validity, and responsiveness. Measurement probabilities will be assessed in consideration of the mode of administration (self vs. proxy-ratings) and level of cognitive impairment. **Benefits to the group:** The study will determine if the EQ-5D-5L is preferable to the three-level version as a self- and/ or proxy-rating for cognitively impaired patients. It provides important empirical evidence about the comparative performance of 5L vs 3L. | Bernhard Michalowsky | Descriptive Systems | 20840 | Completed | 2020 | |
| 202-RA | Using EQ-5D-Y to capture children’s HRQoL in economic evaluation: conceptual and empirical challenges for cost effectiveness modelling and implications for modellers and decision makers. | The specific consideration of health-related quality of life in children is extremely important in Health Technology Assessment, but also raises a number of challenging questions in terms of interpretation and use of data in policy making. Treating QALYs in child and adult populations as equivalent is a strong assumption due to differences in descriptive systems, in valuation, and in framing. Importantly, the range of scores in youth instruments are typically smaller than observed for adults, which can lead to higher ICERs for quality of life improving interventions in children, a consequence that may be unreasonable. Considering children differently can also lead to perverse effects in economic evaluation, such as significant artefactual discontinuities in health-related quality of life in models of cost effectiveness that span childhood into adulthood. This proposal brings together experts from within and outside the EuroQol Group to build a conceptual framework for consideration of such issues, and will lay out a roadmap to help researchers and policy makers. This will identify the range of interpretations of data that we observe in EQ-5D-Y value sets, and identify a range of innovative, practical solutions based on each interpretation. We will explore the perspectives on these matters that already exist, and build in the views of our world-leading methodologists and practitioners in our Expert Advisory Panel. | Nancy Devlin | Valuation, Youth | 24930 | Completed | 2020 | |
| 2014150 | Discrete choice modeling from a different angle | Introduction: Preference-based measurement methods are frequently used to obtain values expressing the quality of health-state descriptions. A crucial assumption in these methods is that respondents pay equal attention to all information components presented in the response task. So far, there is no solid evidence that respondents are fulfilling this condition or are using shortcuts. The aim of our study is to explore the attendance to various information cues presented in the discrete choice response tasks. Methods: Eye tracking was used to study the eye movements and fixations on specific information areas. This was done for seven discrete choice response tasks comprising health-state descriptions. A sample of 10 respondents participated in the study. Videos of their eye movements were recorded and are presented here graphically. Statistics were computed for length of fixation and number of fixations, so differences in attendance were demonstrated for particular attributes in the tasks. Results: All respondents completed the survey. Respondents were fixating on the left-sided health-state descriptions slightly longer than on the right-sided health-state descriptions. Fatigue was not observed, as the time spent did not decrease in the final response tasks. We noted that the time spent on the tasksdepended on the difficulty of the task and the amount of information presented. Conclusion: Eye tracking proved to be a feasible method to study the process of paying attention and fixating on health-state descriptions in the discrete choice response tasks. Eye tracking facilitates the investigation of whether respondents fully understand the information in health descriptions or whether they ignore particular elements. | Paul Krabbe | Valuation | 250000 | Completed | 2014 | |
| 20180080 | Extending the QALY project in the United States – testing the face and content validity of a preliminary list of items | Semi-structured cognitive interviews were conducted with respondents with arange of chronic conditions in Chicago ,Illinois .The mesandissues related toapool of candidate items identify by the E-QALYresearchgroup were discussed with respondents until saturation was reached(n=19). Overall, while respondents were able to understand the items and respons escales ,there was a general preference for positively stated items and for a response scale based on frequency of experience. Respondent preferences for different items was generally guided by the consideration of the context in which the instrument is intended to be used. The assessment of self-reported burden wa sconsidered to be relevant in the American context. | Simon Pickard | Descriptive Systems, EQ-HWB | 15000 | Completed | 2018 | 2018 |
| 2015240 | EQ-5D-5L VALUATION IN POLAND | Objective Cost-utility analysis gain importance also in Central and Eastern Europe (CEE). We aimed to develop Polish utility tariff for EQ-5D-5L health states.Methods Face-to-face, computer-assisted interviews were collected in the representative sample. Each respondent followed a standardizedprotocol to collect 10composite time trade off (cTTO) and 7discrete choice experiment (DCE) observations. In the Bayesian approach, several model specifications were compared based on model fit, the usabilityof the final value set, and how they reflect the elicitation procedure (e.g. censoring). A hybrid approach (using cTTO and DCE data) was employedin the final set, which wascomparedwith the existing ones: EQ-5D-3L and EQ-5D-5L cross-walk.ResultsData from 1252 respondents (11,480 cTTO valuations and 8764 DCE pairs) were collectedin June-October, 2016. The final model accounted for random parameters, error scaling with fattails, censoring at -1, unwillingness to trade in TTO by the religious, and Cauchy distribution in DCE. Pain/discomfort impacts the utility most: disutility equal to 0.575 when at level 5. In the value set, 4.4% of EQ-5D-5L states are worse than dead. Thenew value set has a comparable range (minimum at -0.590 compared to -0.523) and same ordering of the first three dimensions (pain/discomfort, mobility, self-care) as EQ-5D-3L and EQ-5D-5L cross-walk value sets. Moreover,it is more sensitive to mild health worsening.Conclusions The new value set guarantees consistency with past decisions in cost-utility studies,while offering betterassessment of even mild health gains. It can be an option for CEE countries lacking own value sets. | Dominik Golicki | Valuation | 80000 | Completed | 2015 | |
| 2009018 | measuring population health status using a web-based implementation of EQ-5D | Measuring health status using a web-based implementation of EQ-5D : a multi-objective feasibility study Original objectives 1. Establishing the demographic characteristics of respondents who participate in a web-based health survey. 2. Quantifying the comparative costs/benefits and efficiency of alternative recruitment strategies 3. Comparing EQ-5D data obtained using web-based methods with corresponding information generated using traditional P&P methods 4. Measuring, on a within-respondent basis, the robustness of EQ-5D data generated by web-based methods compared with equivalent data generated by P&P method | Paul Kind | Others | 9488 | Ongoing | 2024 | |
| 103-RA | Using EQ-5D to measure health status in Chinese populations during the COVID-19 pandemic | Since the new coronavirus (COVID-19) first emerged in Wuhan China at the end of 2019, the virus has spread to more than 200 countries and territories around the world. China was the first country to report COVID-19 cases and to impose strict lockdown, quarantine and outdoor restrictions. This research aims to investigate the health status of Chinese people during this pandemic. It can also show the usefulness of EQ-5D in describing health status in this global health crisis. We carried out an online questionnaire survey to collect health status information from the Chinese general population. EQ-5D-5L was used as the major component of our survey. Respondents’ sociodemographic information was also collected. The survey was distributed via the WeChat platform to Chinese mainland citizens living in Hubei (the lockdown province) and outside Hubei between February and March 2020, and to Chinese citizens living abroad between mid-March and April 2020. Data of the current survey will be compared with data collected in previous Chinese National Health Services Surveys, in terms of the likelihood of having any problems in all EQ-5D dimensions and mean VAS scores. Among respondents living in their home country, people living in Hubei province will be compared with those living outside Hubei. Health status of overseas respondents will be compared with that of respondents at home. | Zhuxin Mao | Populations and Health Systems | 5280 | Completed | 2020 | |
| 20190270 | Modelling dependence in EQ-VT DCE data: impact on value sets | Background.In health economics, there has been interest in using discrete-choice experiments (DCEs) to derive pre-ferences for health states in lieu of previously established approaches like time tradeoff (TTO). We examined whetherpreferences elicited through DCEs are associated and agree with preferences elicited through TTO tasks.Methods.We used data from 1073 respondents to the Canadian EQ-5D-5L valuation study. Multivariate mixed-effects modelsspecified a common likelihood for the TTO and discrete-choice data, with separate but correlated random effects forthe TTO and DCE data, for each of the 5 EQ-5D-5L dimensions. Multivariate latent class models allowed separatebut associated latent classes for the DCE and TTO data.Results.Correlation between the random effects for the 2tasks ranged from20.12 to 0.75, with only pain/discomfort and anxiety/depression having at least a 50% posteriorprobability of strong (.0.6) correlation. Latent classes for the TTO and DCE data both featured 1 latent class cap-turing participants attaching large disutilities to pain/discomfort, another capturing participants attaching large disu-tility to anxiety/depression, and the third class capturing the remainder. Agreement in class membership was poor(kcoefficient: 0.081; 95% credible interval, 0.033–0.13). Fewer respondents expressed strong disutilities for problemswith anxiety/depression or pain/discomfort in the TTO than the DCE data (17% v. 55%, respectively).Conclusions.Stated preferences using TTO and DCEs show association across dimensions but poor agreement at the level of indi-vidual health states within respondents. Joint models that assume agreement between DCE and TTO have been usedto develop national value sets for the EQ-5D-5L. This work indicates that when combining data from both tech-niques, methods requiring association but not agreement are needed. | Eleanor Pullenayegum | Valuation | 31800 | Completed | 2019 | |
| 20190140 | Valuing health benefits for children and adolescents: Qualitative research examining the impact of perspective and respondents’ priorities around adult and child health | Aim: The valuation of child and adolescent health-related quality of life raises methodological considerations, such as whose preferences, what perspective, and which elicitation technique. Prior quantitative work has shown that these choices impact on elicited preferences, but has not explored why. This qualitative project aimed to produce a better understanding of the impact of: a) perspective and elicitation technique; and b) views around, and prioritisation of, child/adult health, on the valuation of child and adolescent health states by adults.Methods: Six focus groups with 30 members of the UK adult general public were conducted and analysed using Framework analysis. The focus groups had two stages. First, participants individually valued two EQ-5D-Y (youth version of EQ-5D) health states usingTTO and DCE pairwise comparison tasks (without duration), iteratively assuming four perspectives: themselves; another adult; a 10-year old child; themselves as a 10-year old child. Second, a semi-structured discussion explored: task understanding and whatinformed responses; potential differences by perspective and task; views on the prioritisation of child/adult health; and which techniques should be used for informing policy. Results: Participants views were often heterogeneous, but key findings emerged. Typically, participants had a different willingness to trade-off life years for children versus themselves, and this differed depending upon the health profile and who was imagined by participants. The same health states were often viewed as having a different impact on utility for children than adults, but in an inconsistent way across participants. While no strong preferences for prioritising child health over working-age adult health were exhibited, there was consensus over a ‘fair innings’ argument and prioritising younger people over the elderly. Adopting other perspectives was generally more problematic than an own perspective for participants, with them finding the latter preferable.Conclusions: If an adult sample is used to value child and adolescent specific health states, we recommend that an own perspective is used, since this is likely to minimise methodological problems associated with the use of different perspectives, including emotion and bias. If a child perspective is used we recommend that sampling is representative for parental status of children aged below 18, since this can impact on preferences. | Donna Rowen | Valuation, Youth | 43419 | Completed | 2019 | |
| 102-RA | The impact of COVID-19 on health status, based on the EQ-5D-5L, of adults visiting emergency departments and primary care clinics in Alberta, Canada | **Background**: COVID-19 is placing a significant burden on individuals’ physical, mental, and social functioning. As such, it is imperative to explore the impact of this pandemic on the health-related quality of life (HRQL) of populations to inform public health policies and strategies. **Aims**: This proposed study aims to - Examine the impact of COVID-19 on health-related quality of life (HRQL), including physical and mental aspects of health, as measured by the EQ-5D-5L, of adults visiting emergency departments and primary care clinics in the province of Alberta. - Explore whether the impact of COVID-19 is disproportionate in certain groups of the population based on socio-demographic data and deprivation, and as such, identify the most adversely affected groups in this population. **Methods**: We will use data from two on-going large-scale surveys from health service users that have been conducted by the Health Quality Council of Alberta for several years; as such, these surveys will provide data “before”, “during”, and “after” COVID-19. EQ-5D-5L dimension level data and EQ-index and VAS scores before, during and after COVID-19 will be examined in the overall samples, and by population sub-groups to identify the most affected groups of the patient population. **Implications**: This study will provide evidence on the impact of COVID-19 on HRQL trends in adults with various health conditions. Quantifying this impact and identifying the most affected groups in the population will inform public health policies and strategies to alleviate the detrimental consequences of COVID-19 on population health status. | Fatima Al Sayah | Populations and Health Systems | 31955 | Completed | 2020 | |
| 20190360 | Comparison of EQ-5D-3L and 5L value sets/scoring for US users | Aim: Directly-elicited and mapped value sets for both the EQ-5D-3L and the EQ-5D-5L are now available in the US. As stakeholders contemplate transitioning from one instrument to the other, an important consideration for decision makers will be the comparability (and differences between)value sets/scoring functions for the 3L and 5L. The objective of this study is to examine the comparability of scoring functions for the 3L and 5Lin the US.Methods: The properties of the theoretical value set over the entire spectrum of health states described by the value sets will be evaluated. These characteristics include: modality of kernel density plots, percentage of health states with values less than 0, mean level transitions, and range of scale. The value sets will then be applied to respondents from the Crosswalk, US valuation, and if available, the simulation lab (Parkin et al)to compare empirical properties. Bland-Altman plots will be generated to compare agreement between value sets. Discriminative ability will be assessed by ability of value sets to distinguish between known groups using F-ratios. Responsiveness will be analyzed using effect size and standardized response means. Ceiling and floor effects of value sets will be assessed using proportion of utility values greater than 0.95 and less than 0, respectively.Significance: As there has been significant discussion ex-US regarding the transition between descriptive systems and thereby value sets,we propose this work in anticipation of similar interest and issues among users of the EQ-5D in the US. The results of these analyses will inform applications of the EQ-5D in the US. | Simon Pickard | Valuation | 25400 | Completed | 2019 | |
| 115-RA | Facing death to understand the construct validity of the (c)TTO method: a conceptual approach | The construct validity of health utilities, e.g. the (c)TTO, is an under researched area. Existing determinants of (c)TTO are ill-understood. The search for (c)TTO-determinants and their interpretation has not been guided by theory. This proposal focusses on the role of death. In the search for concepts or determinants related to the (c)TTO, the word "dead" has been hopelessly missing. This is an omission as preferences for death as well as trading life are central to the (c)TTO, and this will induce death thoughts. Our proposal focusses on the thoughts of dead induced by the (c)TTO. Terror Management Theory (TMT) is used to understand psychological responses to thoughts of dead. TMT starts from death related anxiety, that occurs after death thoughts. Defense mechanisms, such as bolstering cultural values, are called into action to reduce this anxiety. As both TMT and the (c)TTO involve thoughts of death, we aim to study whether TMT can be used to improve our understanding of (c)TTO determinants. Relevance 1) This proposal is about the construct validity of the (c)TTO. 2) TMT enriches the construct validity of the (c)TTO by embedding it in the concepts of TMT. 3) Connecting (c)TTO and TMT guides the search for new (c)TTO-determinants, as well as interpreting previously found (c)TTO-determinants. | Peep Stalmeier | Valuation, Youth | 21120 | Completed | 2020 | |
| 2016490 | Statistical analysis and preparation of a manuscript describing the responsiveness, and impact on outcomes of administering the EQ‐5D‐Y via internet to children/youths with Type I Diabetes Mellitus in clinical practice. | OBJECTIVEThe objective of the study was to assess the potential for using an internet-administered version of EQ-5D-Y as a routine outcome measure in children/youths with T1DMin clinical practice. Specifically, to assess its capacity to detect changes in health comparing with other measures of Health-Related Quality of Life (HRQOL). METHODSThis is a secondary data analysis of a longitudinal study designed totest whether the systematic monitoring of HRQOLin Spanish pediatric patients with T1DM helps improve their daily life measured with KIDSCREEN-27. Of 205 potential candidates, 136 were consecutively recruited between July and December 2014 from a list of outpatient with T1DM attending to paediatric endocrinology departments at 5 hospitals in the Barcelona province (Spain). Paediatricians were randomly allocated to either the intervention or the control group. The intervention consisted of discussing HRQOL scores between the doctor and the patient at each routine visit. The EQ-5D-Y, the KIDSCREEN-27, and the Strengths and Difficulties Questionnaire (SDQ) were completed, and clinical variables were collected, during the first and last visit of the study in both groups. Changes between evaluations on dimensions of the EQ-5D-Y, EQ-VAS, EQ-5D-YSummaryscore, KIDSCREEN-27 physical and psychological well-being dimensions, KIDSCREEN-10 index, and SDQ were described and compared between groups. Sensitivity, Specificity, and Positive and Negative Predictive Values (PPV/NPV) of the EQ-5D-Y dimensions were estimated. Multivariate models of repeated measures were constructed to assess the HRQL impact of monitoring health over time. RESULTSAt the end of follow-up response rate was 82.6%. Mean of age was 14 years old, and mean time from diagnosiswas 5.56 years.The comparisonbetween 1stand 4thfollow-up visits showed statistically significant improvement in the intervention group for: ‘Worried/Sad/Unhappy dimension’(28.6% and 15.7%, p=0.035), the SummaryEQ-5D-Y score (9.29 and 5.29, p=0.013), the EQ-VAS (78.5 and 83.2, p=0.009), the KIDSCREEN-10 index,and the two KIDSCREEN-27 dimensions. No differences between both visits were found in the control group, except for the SDQ. The GEE showed no differenceson EQ-5D-Y change between groups.EQ-5D-Y dimensions and Summaryscore showed good sensitivity to detect stability (38.5%-95.5%) in health status and high specificity to detect worsening (89.7%-100%) and improvement (77.4%-100%) when using changes in theKIDSCREEN as the criterion measure.EQ-5D-Y dimensions and Index also showed a very high PPV (70.4%-100%) for detecting improvement and a high NPV to discard worsening (71.2%-82.7%) and stability (75%-96.6%).CONCLUSIONThe electronic EQ-5D-Y is wellaccepted by children/youths with T1DMto be used as a routine outcome measure in clinical practice.Results confirm ourhypothesis that mental health improved in the intervention group,as measured by Worry/Sad/Unhappy of EQ-5D-Y and Psychological Well-Being of KIDSCREEN-27. Also, as hypothesized,the EQ-5D-Y shows a high capacity for the detection ofHRQL improvement in these patients, but our results did not confirm the hypothesis about its capacity to detect worsening.Since this latest issue is related to the low proportion of patients experiencing worsening in our sample, further studies are needed to test this capacity. | Luis Rajmil | Youth | 15000 | Completed | 2016 | 2017 |
| 2016120 | A comparison of the validity of the two proxy versions of the EQ-5D-Y instrument in acutely ill and chronically ill children in South Africa. A cross sectional analytical descriptive study | not available | Jennifer Jelsma | Youth | 5000 | Completed | 2016 | 2016 |
| 20170560 | Framing effects when valuing EQ-5D-Y health states in a latent scale DCE | not available | Richard Norman | Valuation, Youth | 37576 | Completed | 2018 | |
| 20180420 | The impact of partial profile designs on the valuation of health states | Partial profile presentation of discrete choice experiment (DCE) choice tasks can be used to simplify health state valuations and reduce the burden on participating respondents. However, research has shown that presenting choice tasks with partial profilescan produce nonequivalent coefficient estimates to the case of presenting as full profiles. This study aimed to examine whether respondents’ tendency to infer missing attribute information can bring the discrepancy of parameter estimates between DCEs withfull versus partial profile presentation. At first, DCE data with two study arms (one with the full profile presentation and the other with the partial profile presentation) were used to examine the differences in EQ-5D-5L parameter estimates depending onthe presentation format. Then, three different models capturing the effect of respondents’ inference for absent attributes in choice tasks with the partial profile presentation were investigated based on three different data sets with varying methods to simulate respondents’ inference behavior. The results showed that DCEs with the partial profiles produced significantly different estimates from the case of the full profile presentation. However, we did not find significant evidence on the effect of inferring absent attributes in DCEs with the partial profile presentation. Nonetheless, we recommend being cautious about using choice tasks with partial profiles as respondents are likely to have structurally different health state values depending on the presentation format. | Sesil Lim | Valuation | 24100 | Completed | 2019 | |
| 20180230 | A fast-track proposal: write and publish a paper comparing DCE data from 11 Asian EQ-5D-5L valuation studies | So far, 11Asian regions(China, Indonesia, Japan, South Korea, Malaysia, Singapore, Thailand, Philippine, Hong Kong, Vietnam, and Taiwan)have conducted their EQ-5D-5L valuation studies following EQ-VT protocol. Currently, there is no research comparing health preference focusing on Asian population. Notably, publishedresearchesaimedto compare the difference in the value set. A downside of directly comparing value set is that the differences identified may stem from 1) preference heterogeneity and 2) methodological differencesand it is difficult to detangle such differences .Despite the fact that all EQ-5D-5L valuation studies followed the EQ-VT protocol, different versions of EQ-VT protocol were developed to improve the quality of data collected using TTO method. Nevertheless,the design of DCE stayed intactfor all these valuation studies. Additionally, the DCE task was performed after the TTO task, which ensured that respondent already familiar with the EQ-5D-5L health description. Therefore, the highly standardized DCE data collection protocol offered a unique opportunity to study the health preference between countries.In this study, we utilize the DCE dataset of eleven Asian regions:first, each region’s data set wasmodelledusing a conditional logit main effect model. For comparison, we createddummy variable to represent different countries andmodelledtwo countries data together with the country variable as an interactionterm to test the differenceof the main effect variables. Next, Wecompared the relative importance of dimensions and relative utility decrements between each of the 5 levels for each country. | Zhihao Yang | Valuation | 6720 | Completed | 2018 | |
| 20190030 | Use of the VAS in the EQ-5D-Y | Background:The VAS is incorporated into all versions of the EQ-5D and in the adult versions, there is a box in which the respondent records the value he/she assigned on the VAS. There is no corresponding box in the EQ-5D-Y. Aim:The VMCwould like to pilot the inclusion of the box in addition to the VAS in the EQ-5D-Y versions. We also wish to examine the comprehension of the younger children with regard tothe VAS.Methods:Bothquantitative and post-coded open question data will be collected. Participants will include children of ages eight to ten years of age attending main stream schools, 60 ineach of these age categories. In addition, five ofthe children in each age group who participated in the first part of the study will beselected using systematic sampling to take part in a structured interview on the use of the VAS.Analysis: The data entry assistants will be blinded as to both scores on the VAS as the responses will be duplicatedand one of the VAS scores will be blocked out. The inter-classcorrelation co-efficient (ICC) will be calculated for absolute agreement at the individual level for each age group (8-8.9; 9-9.9; 10-10.9) and the limits of agreement will be plotted for each age category using Bland Altman plots. The time taken to enterthe data for each form of VAS will be compared.We anticipate that the two responses will be equivalent in the older children but that there might be a discrepancy in the younger children. The interview script will be transcribed and post-coded based onthematic analysis. | Jennifer Jelsma | Descriptive Systems, Youth | 9239 | Completed | 2019 | |
| 20190120 | Prediction of injury recovery patterns: can multiple measurements of EQ-5D data be used in dynamic prediction models? | Background:The understanding of recovery patterns of acute onset conditions supports timely identification of specific patient groups with poor prognosis.Speed of recovery may depend on many factors, including complications that may develop after onset.To predict who faces a poor prognosis, one can use dynamic prediction models. These models use time-fixed data that is available at baseline as well as time-dependent data that is measured longitudinally. Multiple measurements of EQ-5D data have not yet been used in dynamic prediction models of prognosis. Aims:The aims of our study are 1) to assess performance of dynamic prediction models that use the EQ-5D data (summary index, EQ-VAS score, dimensions, cognition bolt on) as time-dependent covariate to predict injury prognosis; and 2) to compare performance of dynamic prediction models that use EQ-5D data versus health utilities index (HUI)data. Methods:We will use data from a large cohort of trauma patients who filled out the EQ-5D and HUI at 1 week, 1, 3, 12 and 24 months post-injury to develop dynamic prediction models that provide individual estimates of good recovery probabilities given patient’s current health status using various time-fixed predictors (e.g. gender) and time-dependent predictors. We will use the landmark approach to develop the dynamic prediction models. Output:Testing the use of multiple EQ-5D measurements in dynamic prediction models and assessing the performance of these models in a patient group with varying recovery patterns may pave the way for further application of longitudinal assessments of EQ-5D data (e.g. PROMs) in prediction modeling. | Juanita Haagsma | Descriptive Systems | 52000 | Completed | 2019 | |
| 20180530 | Agreement between proxy EQ‐5D‐Y and self‐reported EQ‐5D‐Y in a paediatric patient group | Study Design.Prospective cohort study.Objective.To compare feasibility of self-reported and proxy-reported youth version of EuroQoL Five-Dimension Three-LevelQuestionnaire (EQ-5D-3L-Y), to estimate the agreement of healthoutcome between patients with adolescent idiopathic scoliosis(AIS) and their proxies, and to examine factors that may affectpatient-proxy agreement.Summary of Background Data.The EQ-5D-3L-Y question-naire has both self-reported and proxy-reported versions. Despiteprevious studies have indicated that proxies tended to respondwith higher or lower levels of severity in specific dimensionsthan patients report, the level of agreement between childrenwith AIS and their proxies remained unknown.Methods.A consecutive sample of patients with AIS and theircaregivers were recruited. Feasibility was tested according to theproportion of missing responses. Agreements between self-reportand proxy EQ-5D-3L-Y were evaluated using percentage agree-ment, Gwet agreement coefficients and the intraclass correlationcoefficients. Linear regressions and logistic regressions were con-ducted to assess the factors associated with the agreement in healthoutcome between self-reported and proxy-reported EQ-5D-3L-Y.Results.A total of 130 patient-proxy pairs were involved in thestudy. Agreement of EQ-5D-3L-Y responses between the self-report and proxy version was good for ‘‘Feeling worried/sad/unhappy’’ dimension, and very good for other dimensions. Pooragreement in visual analog scale score was observed betweenpatient and proxy versions. Proxy’s education level, patient’scurvature type, and treatment modality were the significantdeterminants of the agreement in ‘‘Mobility,’’ ‘‘usual activities,’’and ‘‘pain/discomfort’’ dimension, respectively.Conclusion.Proxy-reported EQ-5D-3L-Y demonstrates goodfeasibility and satisfactoryagreement with patient version.Proxy’s education appears to have positive influence in agree-ment between patient-proxy dyads.Key words:adolescent idiopathic scoliosis, agreement, EQ-5D-3L-Y, feasibility, proxy.Level of Evidence:2Spine 2020;45:E799–E807 | Carlos Wong | Descriptive Systems, Youth | 5000 | Completed | 2019 | |
| 2013090 | Course Title: Discrete choice for health state valuation | Course offered to EQ members in 2013. Faculty: Estehr de Bekker-Grob, Marcel Jonker, Elly Stolk | Elly Stolk | Education and Outreach | 9450 | Completed | 2013 | 2013 |
| 20180760 | Health-related quality of life in patients with amputation of the lower extremity: a comparison of EQ-5D-3L and -5L performance | not available | Emelie Heintz | Descriptive Systems, Populations and Health Systems | 9600 | Completed | 2019 | |
| 20180640 | Insight into the higher health state valuation for children compared to adults: effect of 3 valuation methods | INTRODUCTION: Available evidence comparing adult versus child stated preferences consistently report higher utility values for children, using the VAS, composite-TTO, DCE-with-death, DCE-with-duration, lag-time-TTO, and location-of-dead-approach, than for adult healthstates (HS). Explanations for these findings have been proposed but not verified.AIM: The aim of this research is to confirm the higher valuation for child compared to adult HS; and to investigate why respondents value child HS differently.METHODS: Eightygeneral public respondents from the UK, Belgium and The Netherlands were invited for a 1.5-hour face-to-face interview. Respondents valued four EQ-5D HS from two perspectives (8-year-old child, 40-year-old adult) using VAS and TTO. Thirty-two of the respondents participated in think-aloud interviewing. Quantitative analyses were carried out in SAS; audio-recorded interviews were transcribed,and a thematic analysis was conducted in NVIVO. Interviews were coded by two researchers using presumption-focused coding. Statements, nodes and themes were reviewed cyclically until consensus was reached within the research team. The aim was to obtain a framework with a limited number of sub-themes(nodes)and uniform statements within each node. A conceptual frameworkwasdevelopeddepicting the relationships between nodes, themes and the life years (LY) trade-off. Qualitative statements made by respondents were contrasted with their quantitative responses. RESULTS: Quantitative results: Statistically significantlyhigher utilitieswere found forchild versusadult TTO values: 0.026, 0.112, 0.377 and 0.294 higher utilities for mild, moderate, severe and worst HS (all p<0.001), whereas significantly higher VAS ratings were only observed for severe HS.Qualitative results:1,221 pages of transcripts were reviewed, resulting in 274coded statements. Fragments were categorised in 5 themes that were present both in child and adult valuation, though with a different interpretation. Two themes encompassed General principles on the value of life: Staying alive is important(Life is worth living even with impaired HRQoL, for children and adults)and Inter-generational responsibility and dependency(All lives are precious: childhood is the foundation yearsand a time for havingnew experiences; adulthood is an important time to take care of the family). Three themes were identified as ConversionFactors:Awareness of poor HRQoL and ability to make decisions(children have difficulties comprehending poor HRQoL and their parents are making choices for them, whereas adults are able to assess their HRQoL and decide for themselves); Adapting and coping(children being flexible and resilient; adults having experience with dealing with difficulties); and the Practical organisation of care(children being unconditionally cared for by their parents; adults being able to organise and pay for care).The five themes were combined into a conceptual framework, labelled the “Circle of life”.Mixed methods: Comparing statements on the value of childhood as a time for new experiences and adults’ roles in life to prepare their children for adulthood, with the same respondents’ TTO values, confirmed the concordance between the qualitative and quantitative results.CONCLUSION: Adult respondents revealed having a lower willingness-to-trade LY for achieving higher HRQoL in children. Child-specific value sets will pose a challenge for pharmacoeconomic evaluation and resource allocation as this might have implications for access to health care for children. | Sarah Dewilde | Youth | 50225 | Completed | 2019 | |
| 2014210 | Health-related quality of life and perceived burden of informal caregivers of patients with rare diseases in Europe | PurposeToevaluate whether the EQ-5D discriminates HRQOL between caregivers’ burden levels, and to examine which caregivers and patients characteristics significantly relate to caregivers’ HRQOL.MethodsIn this study, participants were long-term informal caregivers ofpersonssuffering rare diseases (RD) in several Europeancountriesincluded in the BURQOL-RD study. Besides descriptive statistics, correlation analysis to examinethe relationshipsbetween caregiver HRQOL and self-perceived burden of caring measured by the Zarit scale. Multinomial logistic regression models were used to explore the role of explanatory variables on each domain of caregivers HRQOL measured by EQ-5D.ResultsWe obtained dataon self-perceived burden of caring and HRQOLfrom 825 caregiversincluded in the BURQOL-RD database. CaregiversHRQOL is inversely correlated with burdenof caring(Pearson correlation coefficient=-0.180; P-value < 0.0001). Mobility dimensionwas significantly associated with patientsage, time devoted to care by secondarycaregivers, patient genderand patient utility score.Duration of caring of0 to 5 years are 2.7 times more likely of reporting‘slight problems’ than ‘no problems’in self-care dimension. Patients ́age, burden scoresand patient utilityscoresignificantlypredict the capacityof caregivers to performactivities of daily living(usual activities dimension).Employedcaregiversare lesslikely of reporting ‘slight problems’in pain/discomfort dimensionthan unemployed caregivers. Furthermore, patient age and patient utility score explain differences in thisdimension. ConclusionsThe EQ-5D instrument is sensitive to measure differences in HRQOL betweencaregivers with different levels of burden of care. Patient utility score is strongly associated with all dimensions of EQ-5D instrument exceptanxiety/depression in which perceived care burden plays an important role. | Juan M. Ramos-Goñi | Valuation | 7875 | Completed | 2014 | |
| 20170500 | Hungarian EQ-5D-5L valuation study | not available | Fanni Rencz | Valuation | 9584 | Completed | 2018 | |
| 20170400 | Deriving EQ-5D-5L preference weights for Denmark | Deriving EQ-SD-SL preference weights for Denmark The project has two main aims: First, to derive a set of Danish preference-based weights for the EQ-SD-SL. The current weights were published in 2009 for the EQ-SD-3L (Wittrup-Jensen et al. 2009). We will follow the EuroQol Group's standardised valuation (EQ-VT) protocol to derive local preferences for the EQ-SD-SLquestionnaire, which includes two different tasks: composite time trade-off (TTO) and force-choice paired comparisons discrete choice experiment (DCE) (Oppe et al. 2014). Second, to further explore the DC methodology by adding a new task after the standard EQ-VT protocol. This is likely to be a head-to-head comparison of two DC approaches using a triplet format, one of which has been developed by the Dutch team, and the other by the Australian team. Specifically, we are interested in assessing the effect of duration in association with the choice task, and the use of dead. We will be discussing the details of these investigations with the EuroQol Group's Valuation Working Group (VWG). | Claire Gudex | Valuation | 55000 | Completed | 2017 | |
| 2015040 | Using routine collection of the EQ-5D to enhance shared decision making: a proof of concept study | The propositionfor this project is that patients are not sufficiently informed of the outcomes of total knee arthroplasty (TKA)in order to make an appropriate decision on whether they desire surgery. We propose that by using routinely-collected Patient Reported Outcome Measures (PROMs) from patients who have considered undergoingTKA surgery(including those whohave and have not), we can better inform patients about what they can expect from surgery, leading to improved decisions. Since patients systematically overestimatebenefits, and underestimate harms, we hypothesize this will lead to patients with more moderate pain choosing to delay having surgery | Nick Bansback | Populations and Health Systems | 9400 | Completed | 2015 | |
| 2015330 | Exploring the inconsistent ordering of levels of the EQ-5D-5L value set - Are England and China different? | Introduction: The EQ-5D-5L was introduced to improve sensitivity of the instrument and to reduce ceiling effects. The first group of countries globally, including England, Canada, the Netherlands, Spain and China, have each undertaken value set studies. Interestingly, instances of inconsistent ordering of level coefficients are found in four countries, but not in China. Aims: This study aims to empirically test two possible explanations for the inconsistent ordering of level coefficients in the EQ-5D-5L value sets including (1) logical inconsistency in the valuation data in particular the Time Trade-Off (TTO) data and (2) econometric modelling approaches used in the various valuation studies. Data: Data collection in England and China followed the V1 EQ-VT experimental design. The data sets include 996 respondents in England and 1,296 respondents in China. Methods: We explored the logical inconsistency of respondents in the TTO valuation tasks in England and China using five alternative measures: an inconsistency dummy variable; inconsistency rate; inconsistency distance; inconsistency size and adjusted inconsistency score. We also explored the effects of factors (i.e. socio-demographic characteristics of respondents, interviewer effect, TTO block design) that might have an effect on logical inconsistency in the TTO data. A simple exploration on the DCE tasks for logical inconsistency was also conducted. Comparisons were made between the English and Chinese data for all tasks. Finally, we applied four key models that were developed from the EQ-5D-5L value set for England to the Chinese data to explore the impact of model choice on the inconsistent ordering of level coefficients. Results: Our results suggested that the logical inconsistency in the TTO tasks, using all five measures, was much more severe in the English data than that in the Chinese data. Respondents in China with older age, being male, and who spent more time in the TTO tasks were associated with lower level of logical inconsistency. In England, respondents who reported better health measured by EQ-VAS showed lower inconsistency scores for the TTO tasks. We cannot rule out the effects of TTO block design nor interviewer effects on the logical inconsistency in the TTO tasks. Simple comparison between the DCE data in China and England on the number of times that respondents selected choice A or B showed very similar pattern. Finally, we found no inconsistent ordering of level coefficients in modelling Chinese data regardless of model choice nor type of valuation data. Conclusion: We find evidence of substantially lower levels of logical inconsistency in the Chinese TTO valuation data compared to the English data. It offers an important explanation for the logically consist coefficients in the value sets that we observed using the Chinese data but not in other countries which were part of the first wave of the 5L valuation studies. Key words: Inconsistent Ordering, EQ-5D-5L, Value Set, Valuation Study, Health Utilities | Yan Feng | Valuation | 27543 | Completed | 2015 | 2016 |
| 338-EO | 2nd EuroQoL African Regional Academy (Virtual) | Aims: To expand on the gains of the first African Academy Meeting in 2020 in building capacity in the field of measurement of HRQoL, stimulating interest in the continued and expanding use of the EQ-5D and creating opportunities for researchers in Africa. (Long term) Outcomes: : Greater utilization of the EQ-5D as a patient-reported outcome (PRO) measure across different countries and contexts; improved methodology, analysis and reporting of studies using the EQ-5D; establishment of researcher networks within and between countries; possible interest in doing national or language valuation studies; greater attention to methodological research about EQ-5D; and an increased interest in Health Technology Assessment (HTA) and Cost Utility Analysis (CUA) by health economists and policy makers. | Samar Farid | Education and Outreach | 46580 | Completed | ||
| 2015310 | The impact of duration on EQ‐5D‐5L value sets derived from a Discrete Choice Experiment | not available | Richard Norman | Valuation | 31200 | Completed | 2015 | |
| 2016040 | Assessing the validity of the 86 health state selection for EQ-5D-5L VT studies: are we using the most efficient and valid set of health states to predict health states that exist in practice? | Introduction When constructing an EQ-5D value set, a small number of health states will be directly valued by general public, and subsequently values for all health states are predicted using a regression model. A criterion that has been used for selecting health states for direct valuation, is whether the health states are ‘implausible’ for respondents. Health states being ‘implausible’ refers to those health states that respondent might find unrealistic. Inclusion of implausible states has been assumed to compromise respondents’ engagement with the task and to increase uncertainty around obtained health states’ values. Nevertheless, ‘implausible health states’ can be found in almost all valuation studies. In this study, we first, rated the ‘implausibility’ of all 3,125EQ-5D-5L health states using a student panel and explored the impact of ‘implausibility’ on data modelling; second, we explored the thought process of the respondents used to value ‘implausible’ health states. Methods1,600 students from Guizhou Medical University China, were recruited and each student valued around 200 EQ-5D-5L health states using EQ-VAS. Of those, 890 students provided feedback on the implausibility of health states they valued using a binary scale (implausible/plausible). In addition, 9 students were invited to share their views on ‘implausible health states’ in one on one semi-structured interviews and 12 students were invited in two focus group discussion (6 students each). An ‘implausibility’ score (ranging from 0 to 1, indicating the proportion of respondents who rated a health state as ‘implausible’; a higher score meaning more implausible) was calculated for each health state. Four OLS main effect model were fitted using implausible/plausible/all observations with/without additional implausible variable. Goodness of fit and misprediction effect were compared between models. Thematic analysis was performed for qualitative data by two independent researchers. ResultsApproximately 30% of the 3,125 EQ-5D-5L health states were rated as‘implausible’ by at least 50% of respondents. In the 20 dummy variables main effect model for estimating value set, adding the ‘implausibility’ information in the model as an addictive variable improved the model fit and lowered the MSE with a beta=-3.231(P=0.000) with 95% CI: -4.430, -2.032 (on EQ-VAS). Besides, excluding the implausible observations from the model will result in higher prediction error (MAE from 3.088 to 3.444). The qualitative work showed that some respondents encountered problems whenvaluing ‘implausible health states’. The most frequently reported categories of ‘implausible health states’ was: ‘health states with contradicting levels between dimensions’. The major reason for difficulty in valuing health states reported was ‘lack of experience/knowledge with severe health problems’. Respondents tended to give low value to ‘implausible health state’. Strategies respondents used to value ‘implausible’ state include ‘rewrite the health state to rationalize the contradictions’, ‘focus on certain dimensions and value’ and ‘refer to previous valued health states’.Discussions Our findings suggested that within the EQ-5D-5L set of 3,125 health states ‘implausible health states’ were not rare and respondents tended give low value to ‘implausible health states’. The understanding of ‘implausible health states’ differed over respondents. Nevertheless, inclusion of those implausible health states improves the model to estimated values sets. In cTTO task, the effect of the ‘implausible health state’ may not be problematic as respondent reactions can be controlled by the interviewer. In on-line DCE studies however, without further assistance from interviewers, the inclusion of implausible health state may irritate, confuse respondent and leads to more randomness in the data.ConclusionImplausible health states do exists, are more difficult to value and tent to have lower values, but excluding such state from modelling will result in higher prediction error in overall. Hence, it is not recommended to remove such states from a valuation study. | Jan Busschbach | Valuation | 62200 | Completed | 2016 | 2017 |
| 2014180 | EQ-5D-5L Electronic Measurement Equivalence Project | The overall aim of this study was to provide empirical evidence regarding the measurement equivalence of data collected with various data collection modes (paper, handheld, tablet,interactive voice response [IVR], and web) for the EQ-5D-5L. The objectives of this research were to:1.Collect and analyze test-retest data of the paper version of the EQ-5D-5L; and2.Quantitatively assess (via crossover studies) the measurement equivalence of various modes of data collection (i.e., paper, handheld, tablet, IVR, and web) of the EQ-5D-5L.The testing associated with these objectives involved a series of quantitative assessments of the various modes of the EQ-5D-5L. Several study samples were recruited from the UK general population to meet the objectives and conduct the quantitative assessments. The first group of participants consisted of 240 UK subjects divided across four independent samples (i.e., 60 subjects per sample). These four samples were used to assess the test-retest reliability of the paper EQ-5D-5L, as well as to test the agreement in the scores produced by the paper measureversus the three screen-based implementations of the EQ-5D-5L (i.e., handheld, tablet, and web). The second group of participants consisted of 61 UK subjects recruited to test the agreement in the scores produced by the paper, web, and IVR versions. Test-retest analysis of the paper EQ-5D-5L and analyses of the agreement of the scores of the original paper mode and the electronic modes (i.e., handheld, tablet, web, IVR) were conducted. Specifically, a two-period, repeated measures design was used for assessing the test-retest reliability of the paper form in one sample of 60 subjects. A three-period repeated measures design, with subjects equally allocated to order of completion, was used for testing the agreement among the various modes (i.e., handheld, tablet, web, IVR) in the separate samples of subjects. Statistical analysis consisted of testing mean differences based on a dependent sample t-test for the test-retest analysis, and repeated measures analysis of variance (ANOVA) for the three period contrasts. Estimation of agreement was based on the intraclass correlation coefficient (ICC). Analysis of the test-retest data resulted in mean differences near zero and ICC values above 0.90 for both the index and the global health rating scale (i.e., EQ VAS) scores. These data were also used to set the threshold values for the three period crossover assessments. For the mean differences, one-half of the standard deviations of 0.080 for the index and 8.0 for the EQ VAS was computed. Hence the equivalence intervals for mean differences were set as -0.040 to 0.040 for the index and -4.0 to 4.0 for the EQ VAS. The thresholds for denoting equivalence on the ICC for the three period comparisons were ICC lower 95% confidence interval (CI) ≥0.911 for the index and ≥0.940 for the EQ VAS.For the three period crossover designs, all of the mean differences for the index and EQ VAS were wholly contained in the equivalence intervals. Further, the ICC 95% lower CIs for the index and EQ VAS scores showed values above the thresholds for denoting equivalence across all comparisons in each sample. No significant mode-by-order interactions were present in any ANOVA model. These data, taken collectively, provide strong evidence that the data produced by the paper and electronic versions of the EQ-5D-5L are highly correlated and produce negligible differences in mean scores at the group level. | Stephen Coons | Others | 96430 | Completed | 2014 | |
| 2013160 | Use of EQ-5D in elderly populations (Call for proposal 1) | INTRODUCTION:At present the world is undergoing a demographic revolution, with a sizeable and ongoing increase in the absolute and relative numbers of older people in both developed and developing countries. According to the fact that chronic illnesses and disabilities has a high prevalence between the elderly, it further emphasises the importance of appropriate assessment of health related QoL (HRQoL) within the elderly. The aim of the review was to identify to what extent the QoL/wellbeing of these patients can be measured with the EQ-5D generic instrument. This paper reviews the use of EQ5D in elderly populations (not specific disease groups in old age) with special attention given to the distinction between frail elderly and non-frail elderly and between users and non-users of social/long-termcare. METHODS: A systematic literature search was conducted using the PubMed, EBSCO, JSTOR, Springerlink, Science direct and Wiley online library databases to identify articles that examined the EQ-5D questionnaire in connection to with the elderly. RESULTS: 23 articles, which address the EQ-5D questions in connection to the elderly, have been found. The presentation of the results is prepared from different angles. Firstly, the results are presented according to the countryof research, then according to the type of the study and then according to the target population of the study(i.e. frail elderly in comparison to non-frail elderly and users vs. non-users of social/long term care). The latter division is described in details with special attention given to EQ-5D instrument. CONCLUSION:It can be summarized that EQ-5D is a good instrument to assess HRQoL and also a useful predictor of mortality and first hospitalization. Therefore it can be confirmed that EQ-5D can help to find differences between frail and non-frail elderly and users and non-users of social/long term care. | Valentina Prevolnik Rupel | Others | 18000 | Completed | 2013 | |
| 20190890 | Individual vs. proxy, child vs. adult – A systematic study of different perspectives applied in TTO valuation for EQ-5D-Y | •EQ-5D-Y health states are valued by adults considering that the states affect a 10-year-old child. Earlier work has shown that this perspective may yield different valuations, compared to the perspective used in valuation of adult EQ-5D instruments. However, it is unclear exactly why these differences occur, as the perspective introduced for EQ-5D-Y involves two main changes: i) child health states are valued instead adults’ health states, and: ii) others’ health states are valued instead of valuing health states for oneself. Disentangling the influence of these two changes could be of empirical or normative importance. •In our study, we disentangled these effects by using four different perspectives in EQ-5D-Y valuation with visual analogue scale (VAS) and time trade-off (TTO) methods. Overall, differences between perspectives were consistent, but the direction of this impact depends on the health state and respondent. For VAS, the effect of perspective on outcomes of valuation depends on severity and variance was higher when deciding for children. EQ-5D-Y states valued with TTO on behalf of others (i.e. children or adults) receive higher valuations - but lower variances. •Our study suggests that the use of different perspectives may have a small effect on EQ-5D-Y valuation, but will lead to systematic heterogeneity. Seeing as it is unclear why differences between respondents occur, the search for the empirical and normative implications of perspective used in EQ-5D-Y is far from over. | Stefan Lipman | Youth | 37800 | Completed | 2020 | |
| 20190850 | Validation of the EQ-5D plus respiratory bolt-on in the birmingham copd cohort study | Objectives: Arespiratory bolt-on dimension for the EQ-5D-5Lhas recently been developed and valued by the general public. Thiscurrent study aimed to validate the EQ-5D-5L plusrespiratory dimension (EQ-5D-5L+R) in a large group of COPD patients. Methods: Validation was undertaken with data from the Birmingham COPD cohort study (BCCS), alongitudinal UK study of COPDprimary care patients. Data on the EQ-5D-5L+R were collected from 1,008 responding participants during a follow-up questionnairein 2017 and combined with (previously collected)data on patient and disease characteristics. Descriptive and correlationanalyses were performed on the EQ-5D-5L+Rdimensions and utilities,inrelation toCOPD characteristicsand compared to the EQ-5D-5L without respiratory dimension. Multivariate regression models wereestimated to test whether regression coefficients ofclinical characteristics differed between the EQ-5D-5L+Rutilityandthe EQ-5D-5L utility. Results:Correlation coefficients for the EQ-5D-5L+Rutility with COPD parameters were slightly highercompared to the EQ-5D-5Lutility. Both instruments displayed discriminant validitybut analyses in clinical subgroups of patients showed larger absolute differences in utilitiesfor the EQ-5D-5L+R. In the multivariate analyses,only the coefficientfor the CAT score was higher for the model using the EQ-5D-5L+R utilityas outcome. Conclusions:This study showed that the addition of a respiratory domain to the EQ-5D-5L led to small improvementsin the instrument’s performance. Comparability of the EQ-5D across diseases, currently considered one of its strengths, would have to be traded-off against a modest improvement in utilitydifference when adding the respiratory dimension. | Martine Hoogendoorn | Descriptive Systems | 14700 | Completed | 2019 | |
| 20190860 | Think of the children: rationale for and implications of the perspective in EQ-5D-Y-3L health state valuation | •The EQ-5D-Y facilitates the description and measurement of child and adolescent health-related quality of life (HRQOL) in economic evaluations of health technologies. The recently published standardized valuation protocol prescribes the use of a child perspective, rather than the individual perspective used for valuation of adult EQ-5D health states. An EQ-5D-Y value set is not yet available; however, the limited evidence so far indicates that a child perspective yields different utilities for similar EQ-5D health states. •The choice for and implications of using a child perspective for EQ-5D-Y health state valuation has received little attention. As it is important to understand the reasons for this change and what influence a different perspective has, the objective of this paper is to address this gap in the literature and discuss the rationale for using a child perspective, in comparison to using the conventional individual perspective, and the normative and practical implications of a child perspective for EQ-5D-Y value sets and estimation of HRQOL gains in children and adolescents in economic evaluations. •Although the use of an individual perspective for valuation of EQ-5D-Y health states is possible, it may not be suitable or desirable. However, the discussion of several implications of using a child perspective makes it clear that using this perspective may impact (the development of) EQ-5D-Y value sets and ultimately also reimbursement decisions in healthcare. Further research is necessary for gaining insight into the extent to which this impact is (not) empirically and normatively justified. | Stefan Lipman | Youth | 19700 | Completed | 2020 | |
| 20190840 | Aversion to inequalities in health by EQ-5D domain | BACKGROUND: On average, poorer people in the UK live shorter, and less healthy, lives than richer people. Evidence suggests the UK-public don’t like this inequality, and that they are willing to prioritise gains in life-expectancy to poorer people over richer people. Nobody has tested whether they are equally willing to prioritise poorer people for interventions that improve quality-of-life. If we want to include “inequality aversion”in cost-effectiveness analyses, it would be useful to know whether or not this is the case. We hypothesise that the UK-public are more willing to prioritise poorer people for life-expectancy gains than quality-of-life gains. METHODS: We fielded an online person-trade-off (PTO) study in 1,502 members of the UK-public. Participants were briefed on inequalities in health between socioeconomic groups, and then randomised to PTO exercises about one of ten health-gain types (nine forms of quality-of-life and life-expectancy). In each PTO, participants made choices between interventions that would benefit different numbers of people from either the poorest or richest fifth of society. We logically varied the number of people in each group in response to each participant’s response, in order to determine the relative priority they placed on improving the health of each group. Every participant completed two PTO exercises: one for a 3 QALY gain and one for a 0.5 QALY gain. We tested our hypothesis by comparing participant responses in the life-expectancy arm and each quality-of-life arms. This was done separately for the the two gain-magnitudes. RESULTS: The UK-public are more willing to prioritise poorer people for interventions that improve life | Aki Tsuchiya | Others | 6678 | Completed | 2019 | |
| 71-RA | Does the scoring matter? The impact of using different EQ-5D scoring methods on cost-utility results | 1. What is already known about the topic? Currently, a 3-level (3L) and a 5-level (5L) version of the EQ-5D is available. Both EQ-5D-3L and EQ-5D-5L health states can be converted to utility scores using either a value set or an interim (reverse) crosswalk. A recent study suggested that country-specific EQ-5D-5L crosswalks and value sets produce similar cost-utility outcomes. This study, however, only used empirical data of two trial-based economic evaluations and cost-utility outcomes derived using the EQ-5D-3L were not compared with those derived using the reverse crosswalk. Therefore, it remains unclear whether (reverse) crosswalks and value sets can also be used interchangeably in other patient populations. 2. What does the paper add to existing knowledge? This study provides novel information on the impact of using EQ-5D-3L and EQ-5D-5L value sets or (reverse) crosswalks on cost-utility outcomes for different health conditions (i.e., depression, low back pain, osteoarthritis, and cancer), different disease severity levels (i.e., mild, moderate, and severe), different treatment effect sizes (i.e., small, medium, and large), and different countries (i.e., the Netherlands, the United States, and Japan). The results indicate that the choice of utility scoring method can have a relevant impact on the probability of cost-effectiveness, especially when treatment effect sizes are small. 3. What insights does the paper provide for informing health care-related decision making? Crosswalks may be used when value sets are missing for a specific country or jurisdiction. However, our findings indicate that reimbursement decisions may change depending on the use of either value sets or (reverse) crosswalks. Therefore, when EQ-5D value sets are not available, rresearchers and decision-makers should be aware that the use of (reverse) crosswalk can impact the decision, especially in situations with small effect sizes. | Judith Bosmans | Valuation | 24440 | Completed | 2020 | |
| 2014120 | LSHA Workshop | Paul Kind | Populations and Health Systems | 10000 | Completed | 2014 | ||
| 2014220 | Temporal variation in population health in England | not available | Paul Kind | Populations and Health Systems | 7500 | Completed | 2014 | |
| 2015080 | Valuing EQ-5D-3L health states in a representative sample of the Colombian population : a proposed retest extension | Paul Kind | Valuation | 0 | Ongoing | 2015 | ||
| 2014190 | Understanding relationships between the EQ-5D and Personal Well-being | not available | Sarah Derrett | Others | 9997 | Completed | 2014 | |
| 77-RA | Public health impact of the COVID-19 pandemia: inequity of its effects and the role of health policies. | The Population health impact of the COVID-19 pandemic (POPCORN) study, sponsored by the EuroQol, explored the impact of the COVID-19 pandemic on health-related quality of life (HRQL) and mental well-being of the general adult population of nine countries and investigate the role of individual and country level factors. Data were collected in the first phase of the pandemic (Spring 2020). Results showed that stringency of government response (at country level) had a small positive relation with HRQL and a strong negative relation with mental well-being, although the magnitude of effects differed for healthy persons and diseased persons. Moreover, the youngest age group (18-29 years old) had lowest mental well-being. Results among a sub-group of respondents from New York State showed that the negative impact of the pandemic was aggravated in diseased persons, in part through limited access to health care. | Juanita Haagsma | Populations and Health Systems | 173280 | Completed | 2020 | |
| 2016200 | Clik 2016 | Paul Kind | Populations and Health Systems | 16535 | Completed | 2016 | ||
| 120-RA | The role of time and lexicographic preferences in valuation of EQ-5D-Y for health states better and worse than dead. | Background: There is evidence that adapted wording influences the utility assigned to health states derived from EQ-5D-Y, compared to health states derived from EQ-5D-3L. As a result, EuroQol has proposed a valuation protocol for EQ-5D-Y (Ramos-Goni et al., 2020). In this protocol, instead of an individual perspective as is usual in EQ-5D-5L valuation, adults value health states that are described to affect a 10-year-old child (i.e. a proxy perspective). Aim: Our study aims to explore the degree to which time and lexicographic avoidance of immediate death can explain why EQ-5D-Y utilities elicited with a proxy perspective are generally higher than those from an individual perspective. We answer the following research questions: 1) What is the influence of time preferences on EQ-5D-Y utilities and can this influence be corrected for? 2) What is the difference between EQ-5D-Y utilities elicited by composite Time Trade-off (cTTO) and EQ-5D-Y utilities elicited by lead-time TTO exclusively? 3) If a difference exists, is this related to time preferences, lexicographic preference for immediate death (PFID), or both? Methods: We measure time preferences for each individual (i.e. discounting of a 10-year-old child’s life years) by means of the direct method. The role of lexicographic PFID will be assessed by comparing TTO utilities for 2 severe and 2 mild health states elicited in two experimental arms: cTTO is and lead-time TTO only. The role of time and lexicographic preferences can be studied by comparing these 2 arms before and after correcting for time preferences. | Stefan A. Lipman | Valuation, Youth | 25050 | Completed | 2020 | 2021 |
| 2014080 | Comparison of the EQ-5D-5L to measures of well-being and capability in an older population | Formal and informal social care support is an important input for individuals with long term conditions (LTCs) as they can help maintain well-being even where health is not improving. Health related quality of life measures such as EQ-5D may capture some of the impact of social care but may miss out on aspects such as independence and control and new measures such as the ICECAP-O, ASCOT or well-being have been recommended as alternatives. The overall aim of this study is to compare the new 5 level version of EQ-5D to these new ‘beyond health measures’ in a longitudinal study in order to examine the extent to which EQ-5D already captures the ‘beyond health’ domains covered in these measures. LTCs are more prevalent in older populations therefore participants aged over 65 with and without LTCs will be recruited from the South Yorkshire Cohort, an on-going study, and followed up for a year. The EQ-5D as well as the measures that go beyond health will be administered in a survey alongside health and social service use questions. The psychometric properties of the EQ-5D-5L viz. reliability, validity and responsiveness will be tested against several indicators. The ability of the EQ-5D-5L to predict well-being compared to the other measures will also be tested. Results will provide information on the performance of the EQ-5D-5L in a large elderly population as well as whether it captures aspects that go beyond health such as social care use. | John Brazier | Others | 75616 | Completed | 2014 | |
| 20200030 | travel scholarship Lucky Ngwira | Background & aims: Preference-based measurements (instruments) of childhood health-related quality of life (HRQoL) in sub-Saharan Africa (sSA) are limited. This work set out: i) to explore how the existing instruments are adapted for use in sSA; ii) to establish if the adaptation process aligns with local health perceptions in Malawi; and iii) psychometrically validate the adapted instruments. Methods: Step 1: Cross-cultural adaptation of childhood preference-based HRQoL instruments The adaptation process included the following two stages. i) Translation Two independent translators forward and backward translated selected instruments (EQ-5D-Y, EQ-5D-Y-5L, PedsQL™ 4.0 child self-report, and PedsQL™ 4.0 teen self-report) into Chichewa language for Malawi. The translated versions were piloted (cognitive interviews) in a sample of participants (n=38), aged 8-17years from the main referral hospital and primary and secondary schools within Blantyre city, the commercial capital of Malawi. ii) Cognitive interviews process a) Self completion of the questionnaire For the EQ-5D-Y-5L only, a card exercise was employed to assess the correct hierarchical ranking of response options. All the Chichewa translated instruments were administered to different sets of participants for self-completion. If necessary, children who struggled to understand instruction for self-completion of the questionnaires were given assistance but not on how to respond to them. b) Cognitive interviews Each child participating in the interviews then took part in a one-to-one interview about their understanding of the questionnaire. The interviews were open ended, and participants were asked to comment on how they understood each question and response options. Following piloting and making necessary changes, pre-final Chichewa versions were sent to developers for approval. Step 2: Psychometric validation The approved Chichewa versions were administered to a larger sample (n=298, age 8-17 years) consisting of healthy (n=95) and sick (chronic and acute, n=194) children to assess psychometric performance. The EQ-5D-Y and EQ-5D-Y-5L have five dimensions each with three and five response options respectively. The PedsQL™ 4.0 has 23 items and five response options each. The EQ-5D-Y and EQ-5D-Y-5L scores were generated in two different ways. HRQoL sum scores were generated by adding numeric values of response levels and utility scores were generated using USA utility values to evaluate psychometric performance and utility performance (empirical validity) respectively. The PedsQL™ 4.0 scores were generated following an algorithm provided by the instrument developers. The instruments performance were then assessed using standardized psychometric criteria: item performance (missing data >5%); internal consistency reliability (Cronbach's alpha =0.7); and validity (convergent of EQ-5D-Y sum scores and PedsQL™ 4.0 scores >0.4; discriminant: no association between HRQoL scores with gender & grade; known groups between healthy and sick groups: effect size >0.5). Additionally, since the EQ-5D-Y and EQ-5D-Y-5L are utility instruments, they were assessed for empirical validity (relative efficiency of the EQ-5D-Y-5L relative to the EQ-5D-Y, where >1 means the former performing better than the latter). Content validity was later evaluated by firstly developing a conceptual framework for health from four focus group discussions (FGDs) composed of 6-12 participants, aged 8-17 years. The framework was conceptualized using axial and selective coding FGDs to generate main concepts which were considered important by children and adolescents in a Malawian setting. The concepts from the model were compared against those of the existing EQ-5D-Y dimensions to assess if the EQ-5D-Y contains all the relevant dimensions that children and adolescent consider important in this setting. Results: Ten preference-based HRQoL instruments were identified and none of these had been developed in low- and/or middle- income countries. Of these, only two (HUI3 and EQ-5D-Y had been used in a sSA setting. : i) EQ-5D-Y (preference-based), and ii) PedsQL™ 4.0 self-report (non preference-based) were selected for cross-cultural adaptation into Chichewa and subsequently psychometrically validated in a Malawian setting. i) Translation There were several conceptual and linguistic problems identified from the translation process. Most of these were identified and resolved by translators during the consensus process. However, translation issues such as those referring to ‘life’, ‘health’, and ‘healthy’ were problematic. Some translation issues including those pertaining to qualifiers for responses and dimension equivalence were only resolved during cognitive interviews. ii) Cognitive interviews process a) Self-completion of the questionnaires Children, 0.7) for all instruments. The correlation of EQ-5D-Y (EQ-5D-Y-5L) sum scores and PedsQL™ 4.0 overall scores was >0.4, providing evidence of convergent validity; but the correlation between some of the EQ-5D-Y dimensions and PedsQL™ 4.0 self-report sub-scales was mixed. There was no association between HRQoL scores with gender and age but the association with school grade (p<0.05) showed lack of discriminant validity. For empirical validity, the EQ-5D-Y-5L was 31%-91% less efficient than the EQ-5D-Y at detecting differences in health status using external measures. Discussion and conclusion: Health, life and healthy were complex terms to translate, and even with help from cognitive interviews these were found to be problematic. The cognitive interviews were instrumental in isolating translation problems and appropriate hierarchical ordering. The psychometric findings demonstrate that the Chichewa (Malawi) PedsQL™ 4.0 child self-report and PedsQL™ 4.0 teen self-report established reliability, but evidence of their validity was mixed. While the PedsQL™ 4.0 child self-report met most psychometric criteria, the missing data and lack of known-groups validity means this should be used with caution in younger children and in those with different health conditions. The study did not find much difference between the EQ-5D-Y and EQ-5D-Y-5L in terms of missing data, reliability and known-group validity. The EQ-5D-Y had problems with known-groups validity. The EQ-5D-Y-5L demonstrated reliability and validity except discriminant validity with grade. Whereas the EQ-5D-Y-5L performed better than the EQ-5D-Y in terms of discriminant validity, the latter outperformed the EQ-5D-Y-5L in the utilization of response options as well as in terms of empirical validity. The EQ-5D-Y and EQ-5D-Y-5L were found to be reliable for use among children and adolescents in relation to economic evaluation. However, psychometric testing is required for test re-test reliability and responsiveness that could not be carried out in this study due to COVID-19 restrictions. In conclusion, this research produced Chichewa EQ-5D youth versions which have potential for use in this setting among children and adolescents in Malawi but with caveats. | Lucky Ngwira | Others | 14700 | Completed | 2020 |
Last update: Feb 12, 2024