Funded projects – Table for Download

EuroQol Research Projects – Table for download (You can also see a version of the table with filtering options here)

Project IdTitleAbstractProject PI EmailWorking GroupApproved Budget (EUR)StatusStart YearEnd Year
1735-RAExploring 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-studyIntroduction: 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.goitommolalign49@gmail.comYouth24775Ongoing20242025
1831-EOSponsoring request: Health & Preference workshop at Erasmus University RotterdamPreferences play a central role in healthcare reimbursement decisions, for example informing cost-effectiveness analysis, priority setting, and medical product development. But are preferences as currently elicited to inform these decisions fit-for-purpose, or ‘policy-relevant’? Established literatures in philosophy and behavioural economics challenge this assumption. Relevant preferences would, for example, be well-informed, based on correct reasoning, and due to self-regarding or public-regarding reasons (but not necessarily both). All of these conditions have been contested empirically. This workshop has therefore invited health economists, behavioural economists, and philosophers to make headway on the question: How can we determine whether stated health preferences are policy-relevant, and what should we do if we have good reason to believe they are not? In this workshop, which includes a keynote by Daniel Hausman (Rutgers University), the question of when health policy should be based on health preferences and which challenges exists in the measurement and interpretation of those preference will be explored in three sessions (see below for details). The workshop aims to develop agenda for future interdisciplinary research on policy-relevant preferences in healthcare reimbursement.Valuation2000Ongoing
1741-RAUnravelling the puzzle of low TTO values for establishing a trustworthy EQ-5D-5L value set for SingaporeThis 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.ephln@nus.edu.sgValuation86500Ongoing20242024
1753-PHDExploring response shift in EQ-5D and its implications for healthcare decision making in knee arthroplastyLike 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.Populations and Health Systems67613Ongoing20242026
1783-RAPaving 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.lipman@eshpm.eur.nlValuation, Youth35740Ongoing20242025
1680-RASystem-level PROM collection and EQ instruments: the current state of playAn 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.Populations and Health Systems39000Ongoing20242024
1758-EOThe uniqueness and overlap of the EQ-HWB and the EQ-5D-5L in four diseases, healthy subjects, and caregiversThrough 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.Education and Outreach1248Completed20232023
1694-RABetter understanding of the transition between Y and adult instruments: taking both measurement and valuation differences into accountBackground: 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.roudijk@euroqol.orgValuation, Youth33640Ongoing20232024
1696-RAMeasuring health-related quality of life using the EQ-5D-5L in the general population in Lebanon during the third worst socio-economic crisis in historyThis 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.falsayah@ualberta.caPopulations and Health Systems30500Ongoing20232025
1744-EOISOQOL Annual Conference, Calgary, October 18 - 21; Symposium 7: Measuring and valuing health in children using EuroQol instruments – Challenges and OpportunitiesISOQOL 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.Youth, Education and Outreach11121Completed20232023
1742-EOApplying 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 CarersIn 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.Education and Outreach2370Completed20232023
1738-TVGA visit to APERSU in Alberta for learning and exploring research collaborations aiming to establish an EQ-5D support unit in SIngaporeAPERSU 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.Education and Outreach8590Ongoing20232023
1676-RAEQ-HWB, EQ-5D-5L, and ICECAP-A: A Comparative Study of Health and Wellbeing Measures in Ireland**Background and objective** The current evidence on how well the EQ-HWB and EQ-HBW-S measures perform compared to other instruments is limited. We conducted a cross-sectional study (2023) among the general population of Ireland to explore attitudes towards health and wellbeing. The online survey included the 25-item long form of EQ-HWB, along with other instruments like the EQ-5D-5L and ICECAP-A. By recruiting a nationally representative sample of 1200 Irish people, this study aims to produce further psychometric evidence on the EQ-HWB. **Proposed methods** The exploratory study will look at how three different measures of health and wellbeing perform in the general population in Ireland. Specifically, in this study we propose to: * investigate the dimensionally and the dimension structure of the EQ-HWB, EQ-5D-5L and ICECAP-A using exploratory factor analysis and confirmatory factor analysis. * assess convergent and divergent validity by examining correlation of the EQ-HWB items with the items of the EQ-5D-5L and ICECAP-A. * assess floor and ceiling effects of the EQ-HWB and its items. * undertake known-group differences analyses to explore whether the EQ-HWB is able to discriminate between for example healthy and non-healthy subjects, those with and without caregiving role when compared to the EQ-5D-5L and the ICECAP-A. Findings derived from this study will provide the EuroQol Group with evidence on the EQ-HWB which directly aligns with the Descriptive Systems and EQ-HWB working groups priority areas of research.kinchini@tcd.ieEQ-HWB25000Ongoing20232024
1691-RAPsychometric Validation of the EQ-HWB-S and Potential Cognition Bolt-on Items for the EQ-5D-5L in Dementia Patients in Hong Kong SAR, ChinaCognition 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.clementcwng@cuhk.edu.hkDescriptive Systems, EQ-HWB69650Ongoing20232025
1713-RAAlternative Wordings for the EQ-5D descriptive Systems: Optimising Measurement Excellence - Stage 1 (AWESOME 1)The AWESOME project aims to generate new evidence about and identify possible alternative wordings for the four EQ-5D instruments (Y-3L, Y-5L, 3L and 5L). AWESOME will be split into three stages, where the objective of Stage 1 is to identify conceptual or contextual misunderstandings that may arise in a range of languages during the cognitive debriefing (CD) exercises of the EQ-5D instruments. A qualitative content analysis of CD reports of the Y-3L, Y-5L, 3L and 5L self-complete versions will be undertaken. Overall, 47 youth and 42 adult CD reports, representing different languages/countries and including responses of 712 respondents, will be reviewed that were prepared between January 2018 and April 2023. The proposed analytical framework relies on both deductive and inductive elements. Frequencies of codes and their association with respondents’ characteristics will be analysed to determine how prevalent the misunderstanding is of a certain phrase and whether such a misunderstanding is limited to a certain family of languages, geographic area or age group. Stage 1 of AWESOME is expected to provide a solid foundation for Stage 2 by allowing for a careful selection of issues to be addressed in future work, including suggestions as to the alternatives that could be empirically tested. Stage 1 will further develop the VMC’s comprehensive list of alternative wordings which have been suggested by reviewers during translation exercises (i.e. glossary). This will allow the VMC to standardize any changes for future translation exercises in cases when it is not necessary to institute changes to the English source document.jennifer.jelsma@uct.ac.zaDescriptive Systems, Youth37500Ongoing20232024
1739-EOISOQOL Dissemination of the of the adapted (modified) EQ-5D-Y validation studyPhD 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.Education and Outreach1250Ongoing20232023
1646-RABuilding the health-related quality of life evidence for Bangladesh’s children: piloting EQ-5D-Y Bangla version instrument for BangladeshIn 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.m.sultana@deakin.edu.auYouth12000Ongoing20232024
1612-RAImpact of demographic change on expected value set redundancyAim: 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.mfjonker@hotmail.comValuation22000Completed20232023
1679-RAGarbage in, garbage out? Evaluating the ability of the garbage class MIXL model to identify random response patternsBackground: 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@mfjonker.comValuation55000Ongoing20232024
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-YPurpose 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.Education and Outreach2000Completed20232023
1695-RAImproving DCE design efficiency with (automated) design updatesBackground: 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@mfjonker.comValuation35500Ongoing20232024
1666-VSEstimating EQ-5D-Y-3L Value Set for the kingdom of Saudi Arabia using DCE and c-TTO ValuesIntroduction: 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.ahaljedai@moh.gov.saValuation, Youth0Ongoing20232024
1665-RAEvaluating 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.e.m.mcdool@sheffield.ac.ukEQ-HWB22180Ongoing20252025
1681-RAHealth-Related Quality of Life in children attending specialist health servicesThe 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.Youth47339Ongoing20232025
1710-VSValuation 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.yfantopoulos@gmail.comValuation50000Ongoing20232024
1693-RARAndomized Matched PAirwise Choice Tasks (RAMPACT): making the stand-alone DCE with duration protocol robust to flatliners and validate the protocol’s results with cTTO.Background: A recent study has piloted a protocol for creating value sets for EQ-5D instruments, using DCE duration as a standalone method. This work is still ongoing, but has identified a vulnerability of the DCE duration method as currently implemented. The method is vulnerable to data quality issues, in which case it is impossible to differentiate between respondents that flatline due to task-non-attendance, and respondents that have strong preferences against living in impaired health. This may threaten the aim of comparing the method to the EQ-VT data collected in the same project. Furthermore, the issue can potentially be resolved by randomizing the task layout, allowing us to identify low-quality respondents using model-based approaches. Aims: To test different randomizations of the DCE duration split triplet task layout and to compare the results against cTTO based value sets in the Netherlands. Methods: Three samples, each representative of the Dutch general population, of 500 respondents each will complete an online survey comprising of DCE duration tasks, in which respondents value EQ-5D-3L health states. One sample will use the standard format for DCE duration, as used in the Trinidad and Tobago study protocol, while the two other samples will complete the same choice tasks, for which the layout has been randomized (left versus right, total randomization of the alternatives, respectively). An additional sample of 400 respondents will complete cTTO interviews. The DCE data is analyzed using non-linear mixed logit models with a discount rate, and samples are then compared to between each other, to test whether they yield similar results. The cTTO data is analyzed using a heteroskedastic Tobit model. The three models based on DCE duration data are then compared to the cTTO model, using Bland-Altman plots and by calculating the mean absolute difference.m.jonker@eshpm.eur.nlValuation110570Ongoing20232024
1716-TVGScale 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.Education and Outreach1870Completed20232023
1654-TVGThe 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.Youth9900Completed20232023
1655-EOIHEA Pre-congress session on EQ-5D as a measure of population health, plus sponsorship of 7 LMIC ECR delegates to attend IHEAThe 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.Education and Outreach29000Completed20232023
1539-SGVariability and ease of access in proxy quality of life interviews at the ICUIntensive 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.vander.horst@mumc.nlPopulations and Health Systems50000Ongoing20232025
1587-TVGLearning and promoting health measurement and valuation using EQ instruments across continentsEducation and Outreach18250Ongoing20232023
1627-RAHealth-related quality of life in patients with COVID-19: a protocol for systematic review and meta-analysis of EQ-5D studiesAbstract Introduction: COVID-19 has spread rapidly affecting millions of individuals across the world. While the majority of infected individuals recover, significant proportions of patients experience long-COVID and may suffer severe complications resulting in impaired health-related quality of life (HRQoL). The EQ-5D is becoming the preferred instrument to measure HRQoL. A comprehensive review of the body of available evidence on HRQoL and the factors that influence results of health state utilities could help to better understand HRQoL and contribute to develop tailored interventions. However, despite numerous primary studies on COVID-19 using the EQ-5D, systematic review and meta-analysis is lacking. Therefore, the aim of this systematic review and meta-analysis is to identify and summarize the current available evidence on the HRQoL in patients with COVID-19, measured using EQ-5D instrument. Methods and analysis: A systematic search will be conducted using relevant keywords in PubMed, Embase, Web of Science, Scopus, Cochrane Library, and the EuroQol website that published from December 2019 until January 2023. Published, peer-reviewed, English language studies assessing HRQoL of patients with COVID-19 using the EQ-5D will be included. Data extraction will be conducted using a standardized data extraction form. Study quality and risk of bias will be assessed. The selected study will be reviewed, and the pooled estimate of health utility values will be computed and pooled using a Random effects model. Heterogeneity among included studies will be assessed using visual inspection of forest plots and I2 statistics. Meta-regression will be performed to explore the effects of potential covariates on the HRQoL utility. Further subgroup analyses will be performed based upon relevant variables.Populations and Health Systems24728Ongoing20232024
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@dzne.deDescriptive Systems, EQ-HWB59700Ongoing20232025
1573-RAExploring inequalities in HRQoL in long COVID in Aotearoa New ZealandLong 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@auckland.ac.nzPopulations and Health Systems138600Ongoing20232024
1559-RATesting the validity of the EQ-HWB-s in caregivers of children with health conditionsIntroduction: Measuring quality-of-life in a way that is appropriate and relevant for caregivers is a priority issue that has led to the development of a new measure, the EuroQol Health and Wellbeing instrument (EQ-HWB)(1). The EQ-HWB is a 25-item instrument; a short-form of the EQ-HWB has been derived with 9-items (EQ-HWB-S). The validity and reliability of the instruments now needs to be tested for caregivers in various settings. The proposed study will fill an evidence gap in conceptualising what the EQ-HWB is measuring and describing in relation to caregiver-related quality of life(2), increase our understanding of psychometric knowledge on the instruments in this context, and produce evidence on the use of the instrument in caregivers of children with health conditions. The EQ-HWB-S has been included in the QUOKKA research project’s Paediatric Multi-Instrument Comparison (P-MIC) study(3). Analysis is currently ongoing on the EQ-HWB-S in this dataset; however, the dataset mainly focusses on paediatric instruments, requiring caring burden to be inferred from the severity of the child’s health, and there is little information specific to caregivers. We now have the opportunity to add a survey specific to caregiving using the sample from the P-MIC study where 859 participants have consented to be contacted for further research, to investigate the use of the EQ-HWB and EQ-HWB-S in caregivers of children with health conditions. This project will be novel in that we will collect information specific to caregiving for children with a health condition that will allow us to closely examine the use of the EQ-HWB in this population. We will assess the validity of the instrument in caregivers of children with health conditions and compare the instruments’ performance to an existing instrument designed to measure carer-related quality of life for economic evaluations, the CarerQol (4). This is a unique opportunity due to our access to the P-MIC sample frame. The overall aim of this project is to investigate the validity and reliability of the new EQ-HWB instruments in caregivers of children with health conditions. Aim 1: To determine face and content validity of the EQ-HWB and EQ-HWB-S for caregivers of children with health conditions through ‘think aloud’ and semi-structured interviews. Aim 2: To investigate the validity and reliability of the EQ-HWB and EQ-HWB-S in a sample of caregivers of children with a range of health conditions. Methods: A mixed-methods approach will be taken incorporating qualitative and quantitative analaysis. Sample frame: Participants will be drawn from the “hospital sample” of the QUOKKA P-MIC study. This is a sample of caregivers of children attending the Royal Children’s hospital for their child’s treatment. Of the 1128 cases in this existing sample, 859 participants indicated that they would be interested in further research and could therefore be approached for an interview for Project 1 or to complete the survey in Project 2. Project 1: Qualitative interviews will be conducted to investigate face and content validity of the EQ-HWB items. The interview will be in three stages: 1) a ‘think aloud’ exercise followed by 2) a semi-structured interview to examine participants’ views on the instrument items. 3) Participants will then be asked what aspects of caregiving most affect their quality of life (such as amount of time spent in caregiving and amount of formal and informal support), which will be used to cross check the draft survey inform the questions for the survey in the next phase of the project. Project 2: A sample of 400 participants will take part in a survey aiming to establish the validity of the EQ-HWB in this population. The survey will include information on caregiver characteristics, the EQ-HWB, the CarerQol, and demographic questions. Statistical analysis will include: general performance, acceptability and feasibility (summary of frequency of response, time to complete, self-reported difficulty completing and missing data); known- groups validity (by child health condition, caregiver attributes and caregiver burden); and convergent validity against the CarerQol instrument. A subsample of 50 participants will also receive the EQ-HWB at 2 days post the initial survey to assess test-retest reliability. Outcomes: Results of the project will include 2 reports, one for each of the 2 projects on the validity of the EQ-HWB in this population group. Output will also include presentations to EuroQol working groups and at plenaries, and presentations at national (AHES) and international conferences (either ISPOR or iHEA). These reports will subsequently lead to peer-reviewed journal articles published in high ranking Q1 journals, presenting detailed investigations of the EQ-HWB and the EQ-HWB-S in relation to content and face validity (Project 1) and validity and reliability (Project 2).cate.bailey@unimelb.edu.auDescriptive Systems, EQ-HWB86107Ongoing20232024
1606-RAExamining whether the covid-19 pandemic has affected the Danish general population’s preferences for healthIn a range of countries around the world, EQ-5D value sets on health preferences of the general population are used to guide the prioritisation of scarce healthcare resources. However, questions have been posed about what factors might have an impact on the average health preferences of a population. This might be factors like changes in the population demographic or factors influencing society (Devlin et al. 2022). One societal factor with unknow impact on the health preferences of a population is the covid-19 pandemic. The aim of the present study is to explore whether the average health preferences of the Danish general population have been affected by the covid-19 pandemic. As the data collection for the Danish 5L valuation study was finalised in November 2019 (Jensen et al. 2021), collecting new data on health preferences provide a unique opportunity to assess the impact of covid-19. We propose to use a combination of interviews carried out online via Zoom following the EQ-VT 2.1 protocol and an online DCE survey to explore whether there are any deviations when compared to the Danish 5L data collected before the pandemic. We also propose to ask the respondents permission to contact them again after 3-5 years. This to explore whether (if any) deviations are still present or whether any deviations are an immediate response to a major societal challenge as the covid-19 pandemic. Some studies have examined the consequences of covid-19 on health-related quality of life, but, to the best of our knowledge, no previous studies have explored the impact on health preferences. By using a research design not intended to produce a value set, but to inform whether preferences may change, this study provides valuable insight into the stability of health preferences against a societal factor like the covid-19 pandemic.celga@dcm.aau.dkValuation47789Ongoing20232024
1445-RAAssessment of Impact of an NGO Support Program – The Dara ProjectThis 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.marisaccih@gmail.comDescriptive Systems, EQ-HWB32551Ongoing20232025
1588-RAAn exploratory study on the constructs of health-related quality of life and mental well-being: results from a Belgian population surveyPreference-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.Descriptive Systems16980Completed20232023
1604-RAPopulation health impact of the COVID-19 pandemic (POPCORN): fourth waveThis 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).j.haagsma@erasmusmc.nlPopulations and Health Systems131551Ongoing20232025
1600-RAPopulation norms and inequalities based on EQ-5D-5L general population surveys (POPS 2): Pilot on MethodologyThe 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@med.uni-tuebingen.dePopulations and Health Systems25000Ongoing20232024
1566-RAExamining the psychometric performance of the EQ-HWB in caregivers of persons living with dementia.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. However, its performance in informal caregivers is currently unknown. Caregivers of people living with dementia have the highest time spent on informal care compared to other diseases (1). Using data collected through COCOON, a Dementia Australia funded project, this project aims to investigate the psychometric properties of the EQ-HWB in these caregivers of persons living with dementia. An online survey is currently being developed including demographic questions, informal care-related questions, and a range of quality-of-life measures suitable for caregivers which include the DEMQOL-Carer and CarerQol as well as the the EQ-HWB 25 Both the 25-item (EQ-HWB) and 9 item (EQ-HEB-S) versions will be assessed, noting that the 9 items of the EQ-HWB-S are contained in the longer instrument. We aim to recruit a minimum of 200 participants for the psychometric analysis (2). The psychometric properties of the EQ-HWB and EQ-HWB-S will be assessed in terms of acceptability (missing data), distribution properties (ceiling and floor effects), known groups and convergent validity, and an exploration of the dimensionality using exploratory factor analysis. This high value project offers a unique opportunity for the EuroQol group to gain important information on the psychometric performance of the EQ-HWB and the EQ-HWB-S in caregivers of persons living with dementia compared to well-validated caregiver-specific measures.Descriptive Systems, EQ-HWB24540Ongoing20232024
1575-VSValuation 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@gmail.comValuation, Youth56447Ongoing20232024
1596-RAGetting personal: scoping the potential of using OPUF to develop an EQ-5D-5L-based a decision aid for routine clinical practiceThe 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.p.schneider@sheffield.ac.ukValuation, Populations and Health Systems21880Ongoing20232023
1574-RAAlternative approach to value set construction – accounting for interpersonal utility comparisons taboo based on axiomatic approachBackground 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.michal.jakubczyk@gmail.comValuation19400Completed20232023
1583-RATesting the ordinal relationship between TTO utilities and the ranking of EQ-5D health states : examining the commensurability of preferences in the MVH datasetEstimation 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.Valuation20000Ongoing20232023
1561-RAEQ-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 skin disorder that may largely impact patients’ health-related quality of life (HRQoL), particularly if other organ systems are also involved (e.g., joints, mental health). The Psoriasis Area and Severity Index (PASI) and Dermatology Life Quality Index (DLQI) are the most widely used psoriasis-specific self-report instruments to measure psoriasis severity. However, these may be insensitive to capture the impact of beyond the skin symptoms. The inclusion the EQ-5D, might overcome this limitation. The Swedish National Quality Register for Systemic Treatment of Psoriasis (PsoReg) is a patient-based register. PsoReg collects information on age, sex, BMI, pregnancy status, consumption of tobacco and alcohol, family history, comorbidities, clinical type/degree of psoriasis, historical and current treatment, medication details and its side effects, PROMs (DLQI, PASI, EQ-5D-3L), and patient-perceived discomfort associated with psoriasis. Unique is the option to link to other national registries, e.g., education, health care costs, and sick leave. The current study uses patient data admitted between April 2006 and December 2022 (n=78,691), without linkage. # Research questions • How is EQ-5D associated with the disease-specific DLQI and PASI, both in terms of coverage/overlap, and in 'target' (severity range)? • Assuming that the EQ-5D has unique information (non-overlap), (1) is this specific to particular EQ domains, and (2) is non-overlap specific to particular background characteristics or disease features of the patient. # Significance The primary aim is to determine the added value of EQ-5D to the default disease-specific PROMs in psoriasis (rather than the reverse question!), building on our own research on mental health and costs in psoriasis. This fast track study also prepares for a larger study with PsoReg including comprehensive linkage expanding on the 'added value' concept. Positive collaboration with the register holder can also be a showcase in Sweden supporting expansion of registry-based EQ research.norlander.sun@gmail.comDescriptive Systems, Populations and Health Systems24975Ongoing20232024
1585-RAMaking composite time trade-off method sensitive for worse-than-dead statesObjective 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.michal.jakubczyk@gmail.comValuation89500Completed20232024
1591-RAA Systematic Scoping Review to Sythesise Evidence on Health-Related Quality of Life Measures in AfricaDespite 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.begashaw531@gmail.comPopulations and Health Systems, Education and Outreach22200Ongoing20232023
1578-RARedundancy in HRQoL algorithms: conceptual and empirical challengesThe use of preference-based value sets in HTA and elsewhere is large and growing, and the validity of results generated using such analyses depend on whether the preference-based value sets are reflective of contemporary preferences. There are a number of reasons why value sets might become increasingly redundant over time, relating to changing preferences, changing demographic characateristics, and development of methods to better elicit and model preferences. Conversely, decision-makers may value consistency in value sets, and require a very clear signal to switch use to some other value set. This proposal brings together experts from within and outside the EuroQol Group to build a conceptual framework for consideration of these issues, and will lay out a roadmap to help researchers and policy makers. This will identify the range of factors which might indicate value sets to be redundant, and identify research pathway s that might measure and evaluate such factors. We will explore the perspectives on these matters that already exist in the literature, and build in the views of our world-leading methodologists and practitioners in our Expert Advisory Panel.Valuation39750Ongoing20222023
1572-RAAcceptability, validity and responsiveness of the EQ-5D-3L in people with multiple sclerosis: A psychometric analysis of data from the UK MS Register**Background**: Over the last two decades, concerns have been raised about the responsiveness of the EQ-5D to detect health changes and intervention effects. Such evidence is especially lacking for people living with Multiple Sclerosis (MS), likely due to the scarcity of suitable sources of longitudinal data. In addition, the content validity of the EQ-5D has been questioned in relation to MS, and indications regarding construct validity are mixed. **Aim of research**: To assess the psychometric properties of the EQ-5D-3L in people with MS in terms of acceptability, content, convergent and discriminative validity, and responsiveness. **Proposed methods**: Analysis will be undertaken using data from the UK MS Register, a prospective, longitudinal, cohort study with n=10,600 current participants. Since 2011, the UK MS Register has collected data biannually on a range of socio-demographic and clinical characteristics, and patient-reported outcome measures including the EQ-5D-3L, MS-specific measures of health-related quality of life and disability, the preference-based Multiple Sclerosis Impact Scale-Eight Dimensions (MSIS-8D), and further symptom-specific scales. The EQ-5D-3L will be evaluated in terms of acceptability (missing values), distribution properties (floor and ceiling effects), convergent (Spearman's correlation) and discriminative validity (one-way ANOVA, independent t-tests, standardised effect sizes and absolute mean values), and responsiveness (standardised response means and effect sizes and paired t-tests). All analyses will be conducted in comparison to the disease-specific and preference-based MSIS-8D. **Benefits to the group**: The study will provide evidence of the psychometric performance of the EQ-5D-3L in MS, a long-term condition that has major impacts on physical, psychological and cognitive components of health-related quality of life. This study will also reveal how the EQ-5D-3L performs compared to the disease-specific MSIS-8D. Finally, this study results will provide the necessary groundwork for future investigations of the EQ-5D-5L in this population.e.goodwin@exeter.ac.ukDescriptive Systems24941Ongoing20232024
1602-RAThe effect of perspective, duration and views on life after death on valuation of severe states of EQ-5D-Y-3LObjectives 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.attema@eshpm.eur.nlValuation, Youth38990Ongoing20232024
1582-RADiscrepancies between EQ-5D-5L self- and proxy ratings in dementiaBackground: 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@dzne.deDescriptive Systems24700Ongoing20232024
1507-VSCompletion of the Covid-stranded Norwegian EQ-5D-5L valuation study# Background Under the leadership of Andrew Garrat, a Norwegian EQ-5D-5L valuation study based on vanilla EQVT (using EQ-PVT) was funded in full and conducted by the Norwegian National Institute of Public Health (NIPH). EuroQol members Knut Stavem and Kim Rand assisted. Everything was on track, and data collection roughly half-way complete when NIPH was redirected to handling the pandemic lockdown in March 2020. Data collection was halted and the study team was reassigned. Over time, the trained interviewers found other jobs, the remaining team went on to other tasks, and the PhD student attached to the project adjusted aims to issues related to representativeness and sample size in valuation studies. At NIPH, leadership support and interest in the valuation study has eroded, and there is now no realistic chance that NIPH will provide the necessary resources to re-initiate. Data collection was mostly complete in two out of five study locations, and partially complete in a third. The collected data covers populations in the southern part of Norway, but not the rest. In a Norwegian setting, geographic representativeness is crucial. Remaining data collection would target regions currently not covered. # Proposal We propose to set up a project to complete the study, ideally by completing data collection as originally planned. Jim Shaw at BMS has indicated willingness to provide funding to support data collection through Maths in Health. In order to maintain project anchoring in a public institution, we propose to set up a management project at the Health Services Resarch Centre, Akershus University Hospital, in which we compensate NIPH for time spent by PI Andrew Garrat for project management and leadership, and provide some time for analyses and writing up a manuscript. ***EDITED*** Plan A below is in effect; Maths in Health has negotitated funding from BMS to support the data collection element, which is about to begin. Oversight, analyses, reporting, etc. will be handled at Akershus University Hospital. PI Andrew Garratt will be "bought" from the Norwegian institute of public health in a 20% position for 6 months to take a lead on this. An updated budget, totalling 49000 including EQVT setup has been uploaded to reflect the current setup. No other changes have been made to this proposal submission. ***END OF EDITED PARAGAPH*** **Plan A** If we successfully negotiate data collection funding from BMS, Maths in Health would be responsible for the practical aspects of data collection, including training of interviewers, logistics, and recruitment. Project oversight, ethical (re-)approval, recruitment plans, analyses and reporting would be handled by the team at Akershus University Hospital. Quality control would be shared between MiH and the University Hospital team. Time from funding agreement with BMS to submission of manuscript would be less than 18 months, likely less than 1 year. **Plan B** If data collection negotiations with BMS are not successful, the alternative is to conduct a low-cost add-on study to achieve better geographic representativeness. The plan would be to recruit 1000-2000 adult general population respondents from the whole of Norway to a self-administered DCE-only study. This new dataset would be combined with the available cTTO + DCE data from the previous data collection in a hybrid model variant set up to (in principle) compensate for the lack of geographic representativeness of the currently available data. Tentative quotes from market research companies covering Norway indicate that recruitment of a nationally representative general population sample to an online EQVT-DCE study would come in at ~35-45K Euros, meaning that this plan B approach would be feasible based exclusively on EuroQol funding. While we believe that a resulting value set would be adopted for use in Norwegian HTA, the apparent legitimacy would not be as great as if we were able to complete the original data collection.Valuation49000Ongoing20222024
1504-RATesting 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.Recently, the PIs had concluded a systematic review of qualitative evidence on lived experience among patients with sleep breathing disorder which provided rich qualitative data on how the condition impacted patients’ lives from their perspectives. Based on results of this review, we think that existing sleep bolt-on may not be optimal for use as a PROM in this patient population. At the same time, we had also identified several relevant dimensions which are absent in the standard EQ-5D descriptive system. However, there are existing bolt-ons available, such as relationship, energy/tiredness, and memory/concentration. Therefore, we propose testing in 2 phases all these potentially useful bolt-ons in a clinical population with sleep and sleep breathing disorder. In phase one, we will work with clinicians and patients to assess the content validity in terms of relevancy, comprehensibility, and comprehensiveness of EQ-5D together with the bolt-ons. In phase two, 200 patients with sleep and sleep breathing disorders will be interviewed with EQ-5D-5L and two sleep bolt-on variants plus other bolt-ons relevant for the condition, together with condition-specific PROMs. The bolt-ons will be compared with standard EQ-5D-5L and condition-specific PROMs for their ceiling effects, and sensitivity (using F-statistic and AUC) to severity of sleep and sleep breathing disorder. We hope this project will help improve existing bolt-ons particularly the sleep bolt-on, and inform the EuroQol Group of the potentials of the bolt-ons for use as PROMs in therapeutic areas, where the standard EQ-5D alone is considered inadequate.ephln@nus.edu.sgDescriptive Systems55860Ongoing20232024
1517-RAEQ-5D for proxy assessment of nursing home residents: A systematic review of feasibility and measurement propertiesBackground: Elderly are the fastest growing age group in most developed countries and are significant users of long-term care facilities such as nursing homes. The health and well-being of nursing home residents is a vital goal of nursing home care, with health-related quality of life (HRQoL) being widely identified as a quality measure. However, as many nursing home residents suffer from dementia, their HRQoL may only be assessed by observers such as nursing home staff and family members. The EQ-5D is a commonly used generic HRQoL measure and its proxy version has been tested and used in the nursing home setting. Aims: This review aims to synthesize evidence on the feasibility and measurement properties of the proxy-reported EQ-5D for assessing nursing home residents worldwide. Methods: A comprehensive search of eight databases will be conducted from 1990 to November 2021. Two independent reviewers will perform the study selection, data extraction and risk of bias assessment. Any disagreements will be resolved via discussion with a third reviewer. Data analysis: The evidence from the included studies with measurement properties will be aggregated. The quality of EQ-5D will be determined and rated as 'sufficient (+)', 'inconsistent (±)', or 'insufficient (−)' if ≥75%, 25%–74% and <25% of the relevant studies had a 'positive' rating, respectively. The overall quality of the evidence for each population will be rated using modified GRADE criteria. Where possible, random-effects meta-analysis, subgroup analysis, and meta-regression was conducted to explore factors affecting the measurement properties and supplement the COSMIN-derived summaries, respectively.ephln@nus.edu.sgDescriptive Systems25000Ongoing20222023
1481-PHDIncorporating informal carers' quality of life in health economic evaluation using the EQ-5DWhile, 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.Descriptive Systems, Valuation101000Ongoing20232027
1534-EOOrganizing 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.Education and Outreach7680Completed20222022
1487-RATerror Management Theory: a new observation window on TTO and VASWe 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.stalmeier@radboudumc.nlValuation65150Ongoing20222027
344-VSTesting the feasibility and acceptability of the EQ-5D-Y-3L valuation protocol in adolescents and adults in PakistanRecently, 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.madeehamalik15@gmail.comValuation89507Ongoing20222024
1505-RAPhase-2 study of the Global HTA Agency Survey projectThe views of the HTA agencies on HTA methods can have a significant influence on the generation and use of EQ-5D data. In 2019 we proposed an EuroQol research project to assess the current practices, views and needs of HTA agencies around the world with regard to the use of utility data. The Exec approved the budget for the phase-1 study which aimed to develop and pilot a survey for future roll-out. Here we proposed the phase-2 study. The overall aim is to understand HTA practitioners’ practices, preferences and views regarding measurement and use of health-state values. We will conduct an online survey of personnel in HTA agencies (the survey we developed in phase-1). We will use a 2-stage sampling and recruitment procedure to survey 50 HTA agencies. Both statistical and content analysis will be performed. Findings will be reported to the EuroQol Group and globally at ISPOR meetings.Education and Outreach57500Ongoing20222023
1495-RAA qualitative examination of the content validity of the EQ-5D in patients with Duchenne Muscular DystrophyThe objective of this qualitative study is to examine the content validity of the EQ-5D in a sample of patients with Duchenne muscular dystrophy (DMD) in China. Research team will collaborate with Beijing Dear Mom & Dad DMD patient centre, the biggest DMD patient organization in China, to recruit participants. A total of 30 participants, including 15 adult patients and 15 caregivers of children and adolescent patients, who met our inclusion criteria, will be invited to participate in the web-based one-on-one interview. The interview will include the concept elicitation to identify patient-perceived DMD impact, and cognitive debriefing to assess relevance and acceptability of the EQ-5D-5L and EQ-5D-Y, respectively. The feedback of cognitive-debriefing on the content of the measures will be descriptively summarized. The concept-elicitation data will be analysed thematically.richard.xu@polyu.edu.hkDescriptive Systems30550Ongoing20222025
1530-RARe(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.michal.jakubczyk@gmail.comValuation11400Completed20222022
180-RAA fast-track proposal for supporting a fresh PhD graduate to do post-doc research work on EQ-5DThis 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.Others20000Ongoing20202021
1447-RAInvestigating the dimensionality of wellbeing instruments and their added value in explaining health and wellbeingBackground: 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.vandenakker@lumc.nlDescriptive Systems24540Completed20222023
1524-VSUK valuation of the EQ-5D-5LBackground: 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.d.rowen@sheffield.ac.ukValuation738214Ongoing20222024
466-RATesting the validity of EQ-5D-5L respiratory bolt-ons in a large Australian datasetObjectives: 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@uts.edu.auDescriptive Systems24070Completed20222023
1479-TVGResearch 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).Populations and Health Systems11490Completed20222022
1497-RAValues for EQ-5D-Y-3L: a comparative analysis of value sets and meta-analysis of international valuation dataBackground: 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@unimelb.edu.auValuation, Youth56000Ongoing20222024
1489-RAEstimating interactions between the health domains in stand-alone DCE valuation studiesOBJECTIVE: 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@mfjonker.comValuation44500Completed20222023
1514-RAComparing Measurement Properties of the EQ Health and Wellbeing Experimental Version (Long and Short) and the EQ-5D-5L in the Italian PopulationObjectives: 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.mkuhar2@uic.eduDescriptive Systems, EQ-HWB24900Completed20222023
1455-RAA 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.e.m.mcdool@sheffield.ac.ukDescriptive Systems, Valuation20420Completed20222023
1462-PHDExamining 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).Valuation, Youth283328Ongoing20232027
1494-RAAn investigation of differential item functioning related to age, gender and education in the EQ-5D-5L using ordinal logistic regressionObjectives: 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.hpenton16@gmail.comDescriptive Systems, Populations and Health Systems24750Ongoing20222023
1493-RAAn investigation into the psychometric performance of the EQ-PSO in patients with atopic dermatitis in the UK and GermanyThe 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.hannahpenton@openhealthgroup.comDescriptive Systems49950Ongoing20222023
1484-RAThe impact of traffic-light color coding in discrete choice health-state valuationsPrevious 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@mfjonker.comValuation11200Completed20222022
1483-TVGScientific 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.Populations and Health Systems5750Completed20222022
1465-VSDeveloping a value set for the EQ-5D-5L in United Arab EmiratesWe 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.s@ccho-ma.comValuation, Populations and Health Systems77360Completed20222024
1463-PHDReporting heterogeneity in health description and valuation: identification, correction, and sourcesEuroQol 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).Populations and Health Systems253328Ongoing20222026
206-RAEstimating an EQ-5D-Y-3L value set in the United KingdomThe 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.Youth360500Ongoing20232025
1475-RAExploring the content validity of the EQ-PSO bolt-ons in chronic skin conditions other than psoriasisBackground: Two psoriasis-specific bolt-ons (skin irritation and self-confidence) have been proposed for the EQ-5D-5L. The two bolt-on dimensions may be relevant in other chronic dermatological conditions; however, evidence on their validity is only available in psoriasis patients. Objective: To conduct qualitative research to explore the content validity of the EQ-5D-5L and EQ-PSO bolt-ons in skin conditions other than psoriasis. The study will also explore the content validity in individuals of different ethnicities. Methods: A targeted literature review will be conducted to identify prevalent skin conditions where the domains may be relevant. The review will aim to identify two chronic skin conditions to focus on. A qualitative study will then be conducted to explore the content validity of the EQ-PSO bolt-ons in the selected conditions. Individual interviews will be conducted until data saturation is reached, which is expected to be when 15-25 interviews with patients with each condition have been conducted. Recruitment will aim to include individuals with the selected conditions, including patients of different socioeconomic background, severities and ethnicities, in the UK. The interviews will aim to assess the three elements of content validity: comprehensiveness, comprehensibility and relevance. Interviews will consist of concept elicitation questions to explore important areas of health-related quality of life in the selected skin conditions and cognitive interview questions about the relevance of and potential overlaps between dimensions, appropriateness of wording and recall period, and important health concepts not captured by the EQ-5D-5L and EQ-PSO bolt-ons. Data will be analysed using thematic and content analysis.andrew.lloyd@acasterlloyd.comDescriptive Systems80760Ongoing20222024
1404-RARevised 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 valuationTitle: Are there any challenges in valuing Y-5L arising from the descriptive system? A multi-country study A DCE study was undertaken in 5 countries: Australia, Canada, China, Netherlands and Spain. Data were collected from both adolescents and adults, with the primary aim of determining whether the respondents had any difficulty determining the intended ordinal structure of the Y-5L descriptive system when states from it are presented in valuation tasks. Tasks included included latent scale DCE. In 4 countries, adult respondents were also presented with DCE tasks including duration and dead. In one country, these additional tasks were also asked of adolescents 16 years and older. In addition to the DCE tasks, all respondents completed a response scaling task, where they placed the level labels on a VAS. Data collection was completed in 2023. The principal paper from the project, addressing the study aims, was presented at the 2023 Rome Plenary (Pan et al 2023). That paper is currently being prepared for submission to Value in Health in December 2023. At the request of the Exec and YPWG, early results from both DCE and response scaling were summarised in a slide deck presented to the Exec in 2023, and a memo highlighting findings in relation to the Y-5L descriptive system has been prepared by the YPWG and DSWG. The data from this project will be used by the study team to produce further analyses for 4 further papers (planned for 2024), including an international comparison of the data from 5 countries (Roudijk et al); a comparison of the DCE with duration data for Y-5L and Y-3L in Australia (Pan et al); analysis of the Canadian data, including adolescents' response to duration/dead tasks. Insights from this project are also informing work which is now underway in preparation for valuation of Y-5L.Valuation, Youth169563Ongoing20222023
1499-SGFast and flexible MIXL model estimation using Automatic DifferentationAim: 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@mfjonker.comValuation5400Ongoing20222022
1413-RAFitting mixed logit models with a garbage class instead of manually screening for respondents with low data qualityOBJECTIVES: 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@mfjonker.comValuation25000Completed20222022
1411-VSValuing health‐related quality of life: An EQ‐5D‐5L value set for MoroccoBackground: 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.ab.marfak@gmail.comValuation21000Ongoing20222024
1414-EOThe First EuroQol Latin American Academy MeetingThis 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.Education and Outreach98113Completed20222022
365-RAMeasuring Health-Related Quality of Life (HRQoL) in the Youngest PopulationThe 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.Youth475039Ongoing20222025
404-RABetter 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.michal.jakubczyk@gmail.comValuation39404Completed20222023
1543-RAVMC 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.Others20900Ongoing20222024
427-RAConceptualising bolt-ons: identifying key questionsThe 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.csampson@ohe.orgDescriptive Systems, Valuation42840Ongoing20222024
428-RAUnderstanding 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.pan1@unimelbe.edu.auDescriptive Systems46540Ongoing20232024
450-RADeveloping tools (Stata, R and Excel) for calculating utility values, analysing and reporting data from the EQ-5D family of instrumentsWe 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.jramos@mathsinhealth.comDescriptive Systems, Populations and Health Systems, Youth, Education and Outreach78320Completed20222023
435-RAEmploying Episodic Future Thinking to reduce the distortion of time preference in TTOPrevious 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.attema@eshpm.eur.nlValuation37470Completed20222023
426-RAHealth-Related Quality of Life in children dependent on technology for breathingObjectives: 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.Youth38855Completed20212023
432-RAUsing the online personal utility functions (OPUF) tool to explore issues in the valuation of EQ-5D-YThe valuation of EQ-5D-Y is associated with a wide range of methodological considerations. Whilst a valuation protocol exists, discussions around the most appropriate approaches to valuation have continued and a considerable amount of methodological research is ongoing. Two key considerations are the choice of valuation methodology and the perspective to use in valuation exercises. The personal utility function approach was introduced as a more direct and reflective valuation method compared to existing alternatives and has recently been developed as an online tool (OPUF). The OPUF tool has several advantages over other methods: 1) it can produce individual-level utility functions; 2) relatively few participants are needed to derive a value set; and 3) it produces a value set using a single method, with values being anchored using an innovative trading technique that locates dead within the descriptive system for each respondent (the LOD task). This project aims to utilize the OPUF tool to explore issues relating to the valuation of EQ-5D-Y health states, which can provide several useful insights. Firstly, the LOD task can be used to anchor DCE data and may avoid some of the issues observed with TTO data, potentially providing a useful and less resource-intensive alternative. Secondly, the impact of different perspectives on EQ-5D-Y value sets can be examined further, and heterogeneity can be explored in greater detail than in past/ongoing studies. Alongside these key objectives, the study would also enable a methodological comparison between OPUF and DCE, further contributing to the development of this promising valuation method.dmott@ohe.orgValuation, Youth72150Ongoing20222023
460-RAPopulation health impact of the COVID-19 pandemic (POPCORN): third waveThis 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.j.haagsma@erasmusmc.nlPopulations and Health Systems111160Ongoing20222024
452-RABehavioural Groups for composite TTO dataFor 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.moppe@mathsinhealth.comValuation45760Ongoing20222022
429-RAAssessing the suitability of the EQ-5D-Y for children and adolescents with intellectual disabilityBackground: 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@telethonkids.org.auDescriptive Systems, Youth69921Completed20222023
462-RAEQ-5D 3L in the 2017 National Health Survey for ChileThe 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.vzarateb@gmail.comPopulations and Health Systems14840Ongoing20212022
442-RAEQ-HWB and EQ-HWB-S in Indonesia: content validity, interviewer administered version, and test-retestThe EuroQol Group developed an instrument intended to measure health and social care related quality of life, called EQ Health and Wellbeing instrument (EQ-HWB). It has long (25 items) and short (9 items) version intended to capture a broader range of symptoms and functioning aspects which may be relevant to general public members, patients, their families, social care users and carers. Further research is needed to validate EQ-HWB and compare it with existing instruments. This study tried to collect evidence about: (i) content and face validity, (ii) develop the Interviewer Assisted (IA) version and check its agreement with the self-completion version, (iii) test-retest reliability of the Indonesian EQ-HWB and EQ-HWB-S. The present study will be added into another EuroQol funded project aimed to validate the IA version of EQ-5D-5L. After translating the two EQ-HWB versions into Indonesian language, we will interview 45 respondents (15 literate, 15 illiterate-low literacy and 15 patients) with varying socio-demographics using a think-aloud concurrent protocol. The full sample of literate groups will complete the IA and SC versions together to obtain agreement of the versions. All respondents will complete the EQ_HWB and EQ-HWB-S two times with 2 weeks interval for test-retest. Interview data will be analyzed using a thematic analysis approach. Agreement between the IA and SC dimensions’ responses and test-retest reliability will be assessed by Weighted Kappa (Kw).fredrick.purba@unpad.ac.idEQ-HWB24825Ongoing20222023
449-RAAssessing the health of Ethiopian Adolescents using the EQ-5D-Y-3L: A cross-sectional studyIntroduction: 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).goitommolalign49@gmail.comYouth25000Ongoing20222023
444-RAComparing the psychometric properties of the EQ-5D-3L and EQ-5D-5L in Chinese patients with pompe diseaseObjective: 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.richard.xu@polyu.edu.hkDescriptive Systems24160Completed20222023
402-RAThe ceiling effects of EQ-5D in general population health surveys: A systematic review and meta-regressionBackground: Both 3L and 5L have quite high ceiling effects (i.e. reporting full health “11111”) which may negatively affect the sensitivity to changes or differences in the assessed population's health-related quality of life. The ceiling effects are generally high and vary between studies, countries and versions (3L and 5L) when EQ-5D is used in health surveys of general populations. Aims: To quantify the range of the ceiling effects of EQ-5D instruments in general population health surveys and ascertain the factors causing the variations in the ceiling effects. Methods: A comprehensive search of eight databases will be conducted from Jan 1990 to October 2021. Two independent reviewers will perform the study selection, data extraction and risk of bias assessment. Meta-analysis of proportions will be performed using the function *Metaprop* of Stata. Ceiling effects will be calculated by dividing the number of participants reporting '11111' using 3L or 5L by the total sample size. The DerSimonian and Laird random-effects model will be used to account for substantial between-study heterogeneity. The Freeman-Tukey double arcsine transformation will be used to stabilise the prevalence variance. Subgroup analyses and univariable meta-regression will be used to ascertain the factors affecting the magnitude of the ceiling effects and quantify the identified factor's effect sizes. Multivariable meta-regression analysis will be conducted using a forward stepwise procedure of adding variables with p < 0.05, starting with the smallest p-value to achieve parsimonious model. **The project falls within research theme #4 of DSWG in the 12th Joint Call for Proposals.**Descriptive Systems25000Ongoing20212022
420-RACORFU: a COVID-19 follow-up studyBackground: 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.Populations and Health Systems15660Ongoing20222023
416-RAMind the gap. Psychological distance in EQ-5D-Y valuationObjectives 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.lipman@eshpm.eur.nlValuation, Youth24890Completed20222023
415-RAModelling 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@mfjonker.comDescriptive Systems25000Completed20212022
396-RACorrespondence 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.Descriptive Systems24620Ongoing20222024
401-RATesting content validity of the EQ-5D-Y in ChinaEQ-5D-Y is a preference-based instrument designed for measuring and valuing health-related quality of life (HRQOL) of respondents aged 8-18 years old. It has demonstrated satisfactory measurement properties in children/adolescents with and without certain health conditions in China, and has gained more and more popularity in HRQOL researches. However, its content validity has not been assessed in China yet. Hence, the study aimed to assess the content validity of the EQ-5D-Y in general and diseased children/adolescents in China. Children and adolescents with various health conditions (e.g., anemia, dermopathy, asthma, congenital heart disease and leukemia) in a tertiary hospital in Shanghai, China would be recruited to self-complete the EQ-5D-Y questionnaire and then have a semi-structured interview. The first section of the interview consisted of a series of open-ended questions to elicit concepts and understanding on health, and then respondents would answer questions about the relevance and comprehensiveness of the descriptive system in the second sections. Thematic analysis employing open, focused and axial coding was used to identify the themes and subthemes from the interviews. Each question item and corresponding responses would be entered into Nvivo, and all the scripts would be analyzed by sections in accordance with the questions.Youth18800Ongoing20212023
409-RADeveloping a value set for the EQ-5D-Y-3L in the United StatesThis 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.Valuation, Youth174740Ongoing20212023
398-RATo what extent does EQ-5D reflect the health concepts of Chinese: a scoping reviewIntroduction 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@hotmail.comDescriptive Systems21240Completed20212022
234-VSValuing Health-Related Quality of Life: Developing an EQ-5D-5L Value Set for GhanaIntroduction: 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@chere.uts.edu.auValuation55779Completed20212023
299-RAValidation 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.vince.lau@ualberta.caDescriptive Systems, Valuation, Populations and Health Systems39680Ongoing20212025
370-RAA research programme to support and strengthen the use of EQ-5D instruments in China**Background** China is a strategically important country for EQ-5D instruments in terms of both market size, potential growth in use of HRQoL, and influence across the region. There has already been some use of EQ-5D instruments in China, but there are also some important impediments (e.g., high ceiling effects) and emerging threats (e.g., Chinese-developed HRQoL measures and SF-6Dv2 Chinese value sets) which may limit more widespread use of EQ-5D instruments. **Aim** The overall aim of this programme of work is to support the use of the EQ-5D instruments, to ensure their relevance and maximise their usefulness, and to engage their large-scale users in China. **Data** Our primary data source is Nanjing CDC adult survey which used 3L and SF-12v2 in 2020, and switched to 5L in 2021, covering 30,000 respondents each year. Working in collaboration with CDC, we will add methodological components to the survey in 2021. We will also use the nationally representative National Health Services Surveys (NHSS) data which uses 3L, and collect existing datasets containing both 3L and 5L from Chinese researchers for secondary analysis. **Studies** The programme of work consists five studies: (1) Exploring the effects of data collection mode and processes on the ceiling effects of 3L; (2) Comparing 3L and 5L in general population; (3) Validation of the international 3L-5L crosswalk algorithms; (4) Comparing EQ-5D and SF-6Dv2 in general population; (5) Developing a good practice guideline. We will use both qualitative and quantitative methods as described in detail in the proposal.Descriptive Systems, Populations and Health Systems143900Ongoing20212024
389-RAA head-to-head comparison of measurement properties of EQ-5D-Y-3L and EQ-5D-Y-5L in children and adolescents with heart diseasesCongenital heart disease (CHD) is one of the most common birth defects globally, with a long-term impact on health-related quality of life (HRQoL). The EQ-5D-Y was adapted from EQ-5D through a rigorous adaptation process with inputs from children and adolescences. This approach facilitates the comparison of HRQoL in adults and younger populations, using the same domains of HRQoL. While the first version of EQ-5D-Y uses a 3-level response (EQ-5D-Y-3L), recently, a 5-level EQ-5D-Y (EQ-5D-Y-5L) was developed to reduce the ceiling effects and to enhance sensitivity. But the evidence on comparing the measurement properties of these two instruments is limited with mixed findings. Furthermore, there are no reported studies for evaluating the measurement properties of either of these two instruments in pediatric patients with CHD. We aim head-to-head comparison of measurement properties of EQ-5D-Y-3L and EQ-5D-Y-5L in pediatric patients (age 8-18 years) with CHD. The study will recruit a total of 200 patients for psychometric validation from pediatric cardiology outpatient clinics of two major public hospitals in Singapore. The patients will self-administer EQ-5D-Y-3L, EQ-5D-Y-5L, along with non-preference-based generic (PedsQL Generic Core) and disease-specific (PedsQL Cardiac Module) HRQoL instruments at baseline, 2 weeks (for test-rest reliability) and 6 months (for responsiveness). Measurement properties (discriminative ability, test-retest reliability, convergent validity, ease of use, and responsiveness) will be evaluated and compared between EQ-5D-Y-3L and EQ-5D-Y-5L. The findings of our study will guide the selection of a preference-based HRQoL instrument for clinical research and reimbursement policy decision-making in children and adolescents with CHD.mihir.gandhi@scri.cris.sgYouth25000Ongoing20212024
377-VSEQ-5D-5L Slovenia national value setThe 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.katka.rupel@gmail.comValuation24620Completed20212022
304-PHDThe sequential relief of child health problems: a preference path elicited by a kaizen taskIn a paired comparison for child health valuation, respondents are commonly asked to choose between two children who are suffering (e.g., Child A versus Child B). To make this choice, respondents face a heartbreaking dilemma, causing some to feel guilty for abandoning one child, to question their role as accomplices, and to challenge the merits of the investigation. Instead of choosing between children, an alternative task may show a single profile and ask the respondent to improve the child’s health by sequentially relieving problems. Although such evidence is statistically identical to its multinomial counterpart, this kaizen task (i.e., the Japanese term for continuous improvement) is more realistic, similar to clinical decision-making that personalizes treatment to best meet a patient’s changing needs. In the proposed PhD project, we hypothesize that responses to paired comparisons and kaizen tasks agree but that the kaizen task will be preferred by respondents and will render more precise values through a shorter survey, regardless of the child’s age and problem duration. Our aims include: 1. To develop and implement a kaizen task for child health valuation and compare the preference evidence, response times, and respondent feedback between paired comparisons and kaizen tasks. Craig et al. (2015) conducted the first EQ-5D-Y valuation and published their value set in *Health Economics* (attached). Based on its paired comparison results and subsequent work, Drs. Craig, Rand, and Hartman developed a kaizen task for EQ-5D-5L valuation (under review). Currently, Drs. Craig and Rivero-Arias are collecting preference evidence from paired comparisons and kaizen tasks in their study of children’s surgery outcomes. This first aim extends this line of independent research through primary data collection using LimeSurvey in collaboration with the EuroQol Research Foundation. 2. To assess the effects of child age and problem duration on the preference evidence and their agreement. The 2015 study found that the value of EQ-5D-Y outcomes varies by child age (9 and 11) and problem duration (1 and 2 years) due to the potential implications for child development. Likewise, it is possible that response time, respondent feedback, and task agreement vary by child age and problem duration. For this second aim, a second wave of primary data collection will test for these hypothesized differential effects. 3. To examine individual heterogeneity in the preference evidence and their discordance by task. Respondents may differ in their preferences as well as the agreement between their paired comparison and kaizen task responses. If heterogeneity or discordance exists, it is important to understand their source, which may lead to further innovations. Using the data collected, we will conduct latent-class analyses to test for heterogeneity in the preference evidence and discordance by task. If funded, this three-year PhD project will begin with a systematic literature review (Paper #1) followed by two waves of primary data collection (Papers #2 and #3) and latent-class analyses of respondent heterogeneity (Paper #4). Each aim will be accomplished in collaboration with the EuroQol Office using LimeSurvey and R code, which will facilitate dissemination and integration for future research.Valuation, Education and Outreach102150Ongoing20222025
316-EOThe EQ-5D-5L value set for Italy – Dissemination and OutreachFollowing 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.Valuation, Education and Outreach17440Completed20222022
295-RAThe 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.EQ-HWB61758Completed20212023
309-RAIllustrating the empirical impact of applying different value sets: easy-to-read graphs and tables for stakeholdersAim: 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.krand@mathsinhealth.comValuation31400Ongoing20212022
310-RACANDOUR study: Using EQ-5D-5L to assess the impact of global use of COVID-19 vaccines on health-related quality of lifeAround 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.philip.clarke@ndph.ox.ac.ukPopulations and Health Systems99518Ongoing20212023
289-RACOVID-19 and EQ-5D-5L health state valuationBackground: 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.e.j.d.webb@leeds.ac.ukValuation24950Completed20212022
354-RAContent 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 ItalyBackground: 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.Descriptive Systems, EQ-HWB24760Completed20212022
348-PHDThe social value of avoiding poor health states in childrenAims: 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.Valuation, Youth117903Ongoing20222025
343-RAThe Psychometric Properties of the EQ-5D-5L among Ethiopian Cervical Cancer Patients: A Longitudinal StudyBackground: 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@aau.edu.etDescriptive Systems23387Completed20212023
317-RAInvestigating 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 studyIntroduction: 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.Descriptive Systems25720Ongoing20212023
315-RAThe 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.j.haagsma@erasmusmc.nlDescriptive Systems16080Completed20212022
358-RA{(RRM + RUM) + DCE} *EQ-5D-5L = PreferenceObjective: 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.Valuation26820Completed20212023
319-RAAn examination of the psychometric performance of the EQ-5D in haemophilia: A systematic literature reviewBackground: 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@qcmedica.comDescriptive Systems25000Completed20212023
355-RAFeasibility, reliability and validity and of the EQ-5D-Y (3L&5L) in children and adolescents with ADHDBackground 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@gmail.coYouth24950Ongoing20212023
335-RAAn extensive pilot phase in the Egyptian EQ-5D-5L valuation study - Lessons learnedBackground: 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@pharma.cu.edu.egValuation14400Completed20212021
302-EOIntroduction to Latent Classes in Health Valuation: A Workshop ProposalSupported 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).Education and Outreach22540Completed20222022
349-RAPsychometric 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@dzne.deDescriptive Systems24240Completed20212023
361-RAMulti instrument comparison study extension: focus on EuroQol instruments, psychometric protocols, psychometric analysis and view to international replicationThis project was completed for the 3 themes: THEME A- Addition of new samples 1. Extend the samples of children currently included in the QUOKKA study (more conditions, more serious conditions and conditions expected to rapidly change). 2. Conduct descriptive analyses of the performance of EuroQol instruments (EQ-TIPS, EQ-5D-Y (3L and 5L), EQ-5D-Y (3L and 5L) adapted for age 2-4 years, EQ-5D adult version for use in children >12 years, EQ-HWB for carers, EQ-5D 3L, and 5L) in these populations of children. 3. Directly test proxy versus self-report psychometric performance of EQ-5D-Y (3L and 5L). THEME B- Psychometric analysis 1. To build on the existing QUOKKA P-MIC study and test the psychometric performance of EuroQol instruments that are currently included in, or have been added (under Theme A above) 2. Analysis of psychometric performance to develop and test an explorative crosswalk (or mapping function) between the EQ-5D-Y-3L and EQ-5D-Y-5L as the first step in required international data collection and analysis. 3. To work with key stakeholders and develop an international protocol for the psychometric testing of EuroQol instruments. This will inform other work across EuroQol to develop processes for moving instruments through EuroQol’s IP stages (experimental, beta and approved) that is being jointly led by BM. This is particularly important for instruments for children and carers with a number in development. THEME C- International protocol Future international extension protocolYouth392247Ongoing20212023
342-RAUnderstanding the views of Canadians on valuing health for children and adolescentsObjectives: 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.fengxie@mcmaster.caValuation, Youth44925Completed20212023
367-RAPopulation Health Primary Data Collection ProjectThe intent of this proposal is to create research infrastructure for the EQ group, not a specific research project. As such, we have not specified concrete research questions at this time. Rather, our intent is to maximize the infrastructure that would support future research projects which have specific research objectives/questions. A roster of various projects/objectives/questions would be developed throughout the project, but particularly during year 1, by soliciting specific objectives and measures from the membership and EQ Working Groups. Developing a large research infrastructure such as this could (or perhaps, should) be guided by multiple research objectives, as the volume of data could support a variety of research interests. For the proposed project, the breadth of potential research topics would be characterized under two broad domains: 1. Population Health Status - Developing country-specific population norms - Disease burden in general population - Social determinants of health and population health inequities - Personal health behaviours/attitudes and health status - Health care system expectations/experience - Local (i.e., regional, within country) or International comparisons (for all of above) 2. Comparative performance/Validation of instruments - EQ-5D-5L - EQ-HWB - Selected ‘bolt-on’ dimensions Beyond these initial ideas, suggestions for specific research objectives/questions would be invited from EQ membership/Working Groups. These suggestions would then be discussed, debated and decided by the Project Team. Ideally suggested specific research questions would be supported by specific measures to be included in the surveys. Some allowance for country-specific data collection would be desirable.jeffreyj@ualberta.caPopulations and Health Systems1439446Ongoing20212024
352-RAExploring 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 SwedenSeveral 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.regard@sll.sePopulations and Health Systems70870Ongoing20212025
357-RAA comparative investigation of inequality measures for EQ-5D outcomesBackground: 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.hhbailey@gmail.comPopulations and Health Systems57200Ongoing20212024
321-VSA 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.ephln@nus.edu.sgValuation, Youth147810Ongoing20222023
330-PHDEvaluation of the EQ-5D-Y as a child PROM in tertiary hospitals for high impact childhood conditionsIncreasingly 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.Youth124858Ongoing20222025
285-PHDTo capitalize on the clinical value of EQ-5D - communicating and predicting patient outcomes on the individual patient levelTo 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.Descriptive Systems, Valuation, Populations and Health Systems185161Ongoing20212027
313-PHDMeasuring and valuing health for children and adolescents in EthiopiaEthiopia 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.Valuation, Youth115000Ongoing20212024
356-PHDMethodological 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.Valuation, EQ-HWB258185Ongoing20242028
287-PHDMeasuring Health-Related Quality of Life in Orthopedic Clinical Practice**General** In this PhD-project the broad potential of EQ-5D in Orthopedics is demonstrated, thereby enhancing use of the Dutch arthroplasty registry; it also adds a registry (in scoliosis, a chronic condition). By working from within the setting and with a multi-facetted program we believe we will add to wider implementation in practice, beyond the mere data collection in registries. Two projects have already started, in part sponsored by EQ. The proposal has been reviewed by members of the LSA working group. **Collaborations formed** The proposed research program not only enables a PhD achievement of the candidate, but will also build up an expertise center at the department of Orthopedics at the Erasmus Medical Center (EMC) on the best use of the EQ-5D, given the use at stake, and other available outcome measures. Direct links to the department of Public Health (Haagsma, EMC), other clinical centers, the Dutch registry (LROI) are formed. Also, it internationally reaches out (APERSU; not restricted to this), within feasible limits. This program invests in long-term stakeholder engagement. **Working packages** The proposal includes 5 projects resulting in at least 6 peer-reviewed papers. Key element is level-participation of users, and a strong validation component using other questionnaires and clinical outcomes/decisions. The below mentioned projects function as seeding projects; they will develop new projects for junior researchers/students. 1) *Systematic review on use of PROMs specifically EQ-5D as quality improving tool, with a focus on Orthopedics* The study will provide lessons for the EQ-group to further widen use via e.g. teaching or research. 2) *Using Dutch arthroplasty registry data to show EQ-5D inequalities in Orthopedics* The first study to incorporate findings from the EQUIMETRICS project, providing evidence either supporting or refuting the suitability of the EQ instrument compared to other disease-specific measures in measuring Health Inequities. Methods will be shared at an appropriate time. 3) *Using Dutch arthroplasty registry data to study the impact of COVID-19 in Orthopedics* Besides the societal relevance of reporting an impact this study will show the relative performance of EQ-5D to assess such an impact in comparison to other widely spread measures (e.g. the Oxford set). 4) *A sub-study from the POPCORN-survey to illustrate the COVID-19 impact in the general population with joint disease* The EQ-5D is used as population metric to evaluate health-related quality of life during a pandemic; the evidence will strengthen the position of the EQ-5D/EQ-VAS in this regard. 5) *A registry founding project in scoliosis children in which also the performance of the EQ-5D-A is compared to the EQ-5D-Y* This project will show whether the Youth version translates longitudinally into the Adult version, enabling longitudinal follow-up. **PhD-candidate** The PhD candidate has a double qualification (medicine, health economics) and is currently working as physician at the a.o. COVID-19-ward, aiming to become an orthopedic surgeon in the future. We regard this broad background as one of the unique features. His COVID-19 expertise could benefit the current EQ work in that direction (he already supported the POPCORN wave 2 questionnaire on long-term COVID-19 follow-up).Populations and Health Systems, Youth112680Ongoing20212024
345-PHDStatistical methods for handling and analyzing EQ-5D-5L data in randomized clinical trialsThere 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.Others90000Ongoing20202025
329-RAEQ 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.Descriptive Systems, Populations and Health Systems55230Completed20212022
318-RAMeasurement properties of the EQ-5D-5L among non-small cell lung cancer patients on active treatments in ChinaBackground: 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.jinxuejing2018@163.comDescriptive Systems, Populations and Health Systems39040Ongoing20212022
339-RASystematic 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@gmail.comDescriptive Systems34390Ongoing20212024
337-RAMeasurement properties of the EQ-5D in diseases of the upper respiratory tract: a systematic review**Aims:** To perform a systematic review on EQ-5D (EQ-5D-3L or EQ-5D-5L) psychometric properties in diseases of the upper respiratory tract (including such anatomical areas as nose, pharynx, and larynx). **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@gmail.comDescriptive Systems29865Ongoing20212024
326-RAA feasibility study of applying PAPRIKA to the EQ-HWBBackground: The EQ Health and Wellbeing Short (EQ-HWB-S) is a new measure developed for use in the evaluation of health and social care interventions. Composite time trade-off (cTTO) and discrete choice experiments (DCE) are currently being used to value the measure. However, these methods are cognitively challenging, and combined with the challenge of imagining EQ-HWB-S states, there are concerns about how well respondents engage with the tasks. One approach to minimise burden is an adaptive DCE using the Potentially All Pairwise RanKings of all possible Alternatives (PAPRIKA) method which constrains what respondents see to two dimensions with a separate binary search to identify the location of 'dead'. The aim of this study is to assess the feasibility and applicability of PAPRIKA to value the EQ-HWB-S. Method: A mixed method study with members of the general public will be undertaken inclduing:1) qualitative interviews (n=16) to assess views of PAPRIKA and provide information to develop the online survey; 2) an online PAPRIKA survey (n=300); 3) follow-up interviews (n=24) of those who complete the online survey. Qualitative data will be analysed using a framework approach to identify feasibility and applicability of this approach to EQ-HWB-S. Quantitative data will be analysed and compared to data from the on-going EQ-HWB-S cTTO and DCE study. Results from the study will inform on the feasibility of the approach which offers an alternative to valuing the EQ-HWB-S and potentially bolt-ons are a larger pool of items from the EQ-HWB which has 25 items.c.mukuria@sheffield.ac.ukValuation, EQ-HWB52460Ongoing20212023
320-VSResubmission of pre-approved EQ Project 20190450: Re-estimating the EQ-5D-5L value set for ChinaObjectives: 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.ephln@nus.edu.sgValuation147810Completed20212023
322-RAInvestigating the development of a multi layered “Deep Dive” measure of health-related quality of life based on the EQ-5D: A pilot studyThere 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.Descriptive Systems40280Ongoing20212022
351-RABehind the scenes: a mixed method investigation of the impact of quality control procedures on interviewers performanceBackground. 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@unibocconi.itValuation38140Completed20212022
227-RAComparison of the Afaan-Oromo language version of the EQ-5D-Y-3L and the EQ-5D-Y-5L performance among children and adolescents in EthiopiaIntroduction: In the 10th Euro-Qol joint call for proposals, the Younger Populations Working Group (YPWG) welcomes proposals aiming to validate the five-level EQ-5D-Y in non-English speaking countries, as well as testing the psychometric properties of the extended version in different health conditions. With the already established HTA in Ethiopia and clinicians and researchers interest in measuring health-related quality of life (HRQoL), this research will have crucial implications on measuring HRQoL outcomes, resource allocation, and planning of health care interventions in child and youth populations in Ethiopia. Objectives: To culturally adapt the self-complete versions of the EQ-5D-Y-3L and EQ-5D-Y-5L into Afaan-Oromo (spoken by 35 million native speakers) and to assess and compare the instruments’ psychometric properties in healthy, and children and adolescents with a range of health conditions. • Methods: Both the Y-3L and Y-5L instruments will be translated into Afaan-Oromo following the procedures set by the Euro-Qol Group’s VMC guidelines. Data will be collected from main-stream schools in Addis Ababa and from Tikur Anbessa Specialized Hospital (TASH). Participants will be asked to complete the two versions of the EQ-5D-Y instrument. Descriptive statistics will be used to describe the characteristics for the five separate dimensions of EQ-5D-Y-3L/5L and EQ-VAS. The feasibility, test-retest reliability and known groups’ validity of the EQ-5D-Y-3L and EQ-5D-Y-5L self-complete versions will be tested in a cross-sectional study in paediatric patients aged 8–15 years with any of three health conditions, acute lymphocytic leukemia, congestive heart failure, and asthma (n≈100 for each condition) and healthy children’s (school) (n≈200).goitommolalign49@gmail.comYouth22080Ongoing20212022
274-RATesting the psychometric properties of two respiratory bolt-onsA key goal of the EuroQol Group is to continuously improve the EQ-5D descriptive system. One of the ways is to utilize dimensional bolt-ons that may better capture the health-related quality of life (HRQoL) of patients with certain diseases. Recently, Hoogendoorn et al. had developed two respiratory bolt-on dimensions to improve the responsiveness of EQ-5D in assessing respiratory diseases, such as chronic obstructive pulmonary disease (COPD) and asthma. The importance and feasibility of the two bolt-ons have been demonstrated in a valuation study. However, their psychometric properties are unknown. Therefore, we propose to test the construct validity, test-retest reliability and responsiveness of the two respiratory bolt-ons in patients with COPD and asthma. This study will piggyback on an existing EuroQol research project to prospectively collect data from patients with COPD and asthma (n=200) using the two respiratory bolt-ons. The construct validity of the two bolt-ons will be assessed in the form of convergent validity and known-groups validity by examining their association with clinical variables and a disease-specific HRQoL measure. The test-retest reliability of the bolt-ons will be assessed using patients whose health status are known to be stable over time and responsiveness will be assessed using patients with improved or worsened health status. This project will provide the first evidence for the psychometric properties of two respiratory bolt-ons. Such evidence will be useful to inform the decision on the movement from the beta version to the approved version as well as future research for the two bolt-ons.Descriptive Systems24790Ongoing20212022
282-RARandomised equivalence study to compare online interviews versus face-to-face interviews to value the EQ-5D-5L using cTTO: Australian armIntroduction: 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.Valuation182848Completed20212022
243-RAThe relationship between the EQ-5D-5L “anxiety/depression” dimension and anxiety and depression symptomsBackground: The EQ-5D-5L “anxiety/depression” (A/D) dimension is a so-called composite dimension. The forced single response relies on the respondent's ability to choose a level when the levels of the anxiety and depression problems, taken apart, may differ. This study investigates the properties and use of the A/D dimension. Study aims: The aims of this study are: (1) to establish empirically the descriptive aggregation rules of respondents to report health; (2) to investigate the relationship between the composite A/D dimension, separate anxiety (A) and depression (D) dimensions and anxiety and depression symptoms as measured with the Generalized Anxiety Disorder–7 (GAD-7) and Patient Health Questionnaire–9 (PHQ-9). Methods: This study is a secondary data-analysis of data from the POPCORN study. These data were collected using a web-based survey among general population samples from 9 countries (total n=24,689). The primary outcome measures of our study are the EQ-5D-5L A/D dimension level score, separate A and D dimension level scores (5L) and the PHQ-9 and GAD-7 score. We will use head-to-head comparisons to compare outcomes of the EQ-5D-5L A/D domain with the separate A and D domains. We will examine the frequency of reported problems on the composite AD dimension and separate A and D dimensions by constructing cross tables with AD and A and D. We will assess the Spearman rank correlation coefficient to examine the convergent validity of the AD dimension and the A and D dimension and the GAD-7 and the PHQ-9.j.haagsma@erasmusmc.nlDescriptive Systems19560Ongoing20212023
198-RAGoing beyond life expectancy– Examining health inequalities in quality adjusted life expectancy (QALE) in AustraliaWe 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@deakin.edu.auPopulations and Health Systems24640Completed20212022
235-RADo EQ-5D valuations differ in palliative care settings? A discrete choice experimentEvidence suggests that people value health differently in different social care contexts. If this is true, EQ-5D values may be sensitive to the context in which they have been obtained. Therefore, it is important to understand how EQ-5D values might vary, given the context. A debate has recently focused on the health state values elicited from the general population when used to assess palliative and end-of-life interventions. We argue that the trade-off between different domains of EQ-5D may change fundamentally as people progressed through different palliative health care states. This study proposes to contribute to the growing literature on the prioritisation of health care by exploring the valuation of EQ-5D-5L (EQ-5D) in palliative situations using a discrete choice experiment (DCE). Palliative situations will be described and contextualised using a vignette model of presentation, developed by a 3-stage iterative process, including exploratory qualitative work, expert panel discussion, and pilot testing. A DCE will elicit preferences for EQ-5D health states in the context of the palliative care vignettes.irina.kinchin@chere.uts.edu.auValuation47600Ongoing20212024
245-RAThe search for a task to measure time preference in EQ-5D valuation: systematic review, experiment and application to stand-alone DCEBackground: 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.lipman@eshpm.eur.nlValuation134400Ongoing20212024
20210010Translating 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.Others1898Completed20212022
236-RADoes 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.attema@eshpm.eur.nlValuation, Youth39360Completed20212021
232-RAMeasurement properties of EQ-5D-Y and other commonly used generic preference-based measures for children and adolescents: a systematic reviewBackground & 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.ephln@nus.edu.sgDescriptive Systems, Youth22800Completed20212021
217-EOPromoting and Supporting the use of EQ-5D instruments in ChinaSince 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.Education and Outreach22400Ongoing20212022
20200060Grant to develop the outcomes-research component of the intended Capacity-2 studyCapacity-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.Populations and Health Systems29500Ongoing2020
229-RAExamining the psychometric properties of a split version of the EQ-5D-5L anxiety/depression dimension in patients with anxiety and/or depressionThe 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.Descriptive Systems24780Completed20212022
209-RABuilding in latent class support to xreg R package – simplifying access to linear and non-linear, latent class, random effects, censored/interval, and hybrid regression methodsThe ‘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.krand@mathsinhealth.comValuation22700Ongoing20222024
194-RAAssessing 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@flinders.edu.auDescriptive Systems, Populations and Health Systems97287Completed20212022
223-RAContent validity and measurement properties of the EQ-5D-3L and EQ-5D-5L in epilepsy patients in a low-income settingAbstract 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.melestekie@gmail.comDescriptive Systems24167Ongoing20212021
214-RAMeasurement 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@gmail.comDescriptive Systems, Youth31140Completed20212021
221-RATesting two alternative TTO methods for valuation of EQ-5D-Y health states by trading life years in adulthoodIntroduction: 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_cn@126.comValuation, Youth49760Completed20212021
244-RAThe 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 caregiversBackground: 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.bernhard.michalowsky@dzne.deDescriptive Systems49060Completed20202023
196-RAValidity of the EQ-5D-3L and EQ-5D-5L in advanced MelanomaThere 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.franken@imta.eur.nlDescriptive Systems25000Ongoing20212022
216-RAExploring the validity of EQ-5D-5L in Indigenous people of CanadaBackground. 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@ualberta.caDescriptive Systems119441Ongoing20212023
215-2020RATranslating the ‘Methods for analysing and reporting EQ-5D data’ into ChineseThe interests of using EQ-5D is growing rapidly in China. Many Chinese studies were published on Chinese journals. Unlike the studies published in English journals, the studies published in Chinese received little attention from the EuroQol Group. Moreover, both the reviewers and editors of the Chinese journals often lack sufficient knowledge about EQ-5D. For such reasons, the use of EQ-5D including data collection, data analysis and report were often not well prepared or conducted in many studies published on Chinese journals. Although many Chinese EuroQol members have been trying to help the local researchers/users as best as they could, there are always some users could not get assistance when they need. Recently, Devlin et al published a book ‘*Methods for analysing and reporting EQ-5D data’*. We felt this could be extremely helpful for users. However, due to limited English fluency for some Chinese researchers, especially those who chose to publish on Chinese journals, the original English version may not be well understood easily. Hence, in this project, we aim to translate the book into Chinese together by a group of Chinese EuroQol members, and make it available for all interested users.zhihao_yang_cn@126.comEducation and Outreach26530Ongoing20212023
225-RAAssessing and comparing psychometric properties of both 3L/5L of EQ-5D-Y and adult EQ-5D versions in adolescents with prevalent disease conditions in EthiopiaIntroduction: 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.abrishg20@gmail.comDescriptive Systems, Youth24693Completed20212021
242-RAInterviewer Administered and Self-Complete versions of EQ-5D-5L: agreement and psychometric propertiesThe 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.purba@unpad.ac.idDescriptive Systems44370Ongoing20212022
224-RAA review of the impact of a one day versus a seven-day recall period on domains from the EQ-5D and EQ-HWB instrumentsMethod: 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.tessa.peasgood@unimelb.edu.auDescriptive Systems24720Completed20212021
222-RAPilot 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 pandemicObjective: 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.Valuation171453Completed20202022
128-RAA global survey of HTA agencies for their views on health utility instruments and data: protocol developmentOrganizations 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.ephln@nus.edu.sgOthers50400Completed20202022
192-VSValuation of the EQ-5D-Y in HungaryBackground: 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@uni-corvinus.huValuation, Youth2800Completed20202022
188-RAA comparison of proxy 1 and proxy 2 of EQ-5D-Y: validity, reliability and responsivenessWhen 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.Youth22120Ongoing20202024
20200050Startup & support cost for the UK 5L valuation studyValuation18312Completed20202021
82-RAValuing 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.koonalshah@phmr.comValuation, Youth126330Completed20202023
104-RAUsing TTO data to anchor DCE data and produce EQ-5D-Y value sets: comparing alternative approaches using existing and simulated dataThe 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.dmott@ohe.orgValuation, Youth24860Completed20202020
145-RAPatient 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)j.bonsel@erasmusmc.nlPopulations and Health Systems14680Ongoing20212024
134-RAValuing well-being alongside health: What can and should be done? Project number 20190750 (Revised)Recent research has focussed on widening the classification system used to measure health to capture aspects beyond health to focus on dimensions such as quality of life. This presents challenges for the methods used to elicit utility values as well as around the scope of the QALY itself and its role in informing cost-effectiveness analyses. This PhD will contribute to methodological developments and understanding in the area of eliciting preferences for states that combine both health and wellbeing and that may contain a large number of both overlapping and independent dimensions. The feasibility and appropriateness of different preference elicitation methods for use to value a widened classification system have not been fully explored. The PhD will involve a literature review and primary research using a mixed methods approach involving both qualitative and quantitative research. In particular, the PhD will explore how discrete choice experiments (DCE) can be designed and undertaken to meet the challenges raised through a widened classification system including overlapping concepts and a large number of dimensions (potentially beyond the number that can be considered all at the same by a research participant). This will include both quantitative aspects of design alongside qualitative exploration of how participants undertake the DCE tasks, what influences their choices, and whether they understand the tasks. Towards the end of the project an online survey will be used to determine the feasibility of the use of DCE using a design building upon the findings from the qualitative research.Valuation132598Ongoing20202024
138-RAPreference heterogeneity in health valuation: Peru EQ-VT dataBackground: 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.suzanakarim@mail.usf.eduValuation24480Completed20202022
76-RAA PhD grant to investigate the valuation of worse-than-dead health statesHealth 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.ephln@nus.edu.sgValuation150000Ongoing20212025
111-RADeveloping and testing a version of EQ-5D-Y for use in children aged 2-5 years using a mixed methods approachBackground: 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@unimelb.edu.auYouth87200Completed20202023
148-RACombining health and social outcomes using the EQ-5D-5L and the ASCOT – development of a pilot value setTo 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 care-related 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@chere.uts.edu.auDescriptive Systems, Valuation55540Ongoing20202024
133-RAAssessment 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-9DThe 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.abrishg20@gmail.comYouth72199Ongoing20222023
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.sd@she-consulting.beValuation, Youth138130Ongoing20202021
69-RAA mixed methods approach to testing alternative recall periods for EQ-5D (2nd revision)Improving EQ-5D descriptive systems is an important task of the Descriptive System Working Group (DSWG) of the EuroQol Group, and it has been explored through increasing levels and dimensions. This project explores whether changing the time frame, or recall period, of EQ-5D may improve its sensitivity for patients whose symptoms are episodic. The project will be carried out in two phases. In phase 1, we will work with clinicians and patients to identify two new recall periods that may enhance the ability of EQ-5D to capture the effect of episodic symptoms on health. In phase 2, patients with asthma or COPD will be interviewed with EQ-5D-5L and an EQ-5D-5L variant, and the St George Respiratory Questionnaire. The EQ-5D-5L variants will be compared with EQ-5D-5L for their ceiling effects and sensitivity (using F-statistic and AUC). This project will inform the EuroQol Group of alternative recall periods that may help further improve the current EQ-5D descriptive systems.Descriptive Systems65280Ongoing20202022
89-RAInvestigating 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.abrishg20@gmail.comDescriptive Systems23960Ongoing20222023
151-RADoes 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.j.haagsma@erasmusmc.nlDescriptive Systems13400Ongoing20202023
109-RAImproving predictive precision in valuation studies using non-parametric techniquesBackground: 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@sickkids.caValuation32000Completed20202021
137-RANavigating antithrombotic therapies with the EQ-5D: An analysis of the COMPASS TrialThe 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.fengxie@mcmaster.caOthers22740Completed20202020
79-RAThe psychometric properties, feasibility and usefulness of the EQ-5D-5L in Ethiopian stroke patients- A mixed-methods longitudinal studyStroke 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@mu.edu.etDescriptive Systems24000Completed20202021
100-RAValuation of the EQ-5D-3L-Y in the Netherlands and an investigation on different proxy perspectivesBackground: 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.Valuation, Youth81427Completed20202021
157-RATowards 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.janssen@euroqol.orgPopulations and Health Systems68890Completed20202023
91-RAEQ-5D-5L in productivity assessment according to the type of occupationEQ-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.konbeata@gmail.comDescriptive Systems24226Completed20202021
83-VSAn Australian Value Set for the EQ-5D-YThe aim of the work is to develop an Australian value set for the 3-level EQ-5D-Y. Australia is a major market for EuroQol, with widespread use of generic instruments. While the EQ-5D-Y is used, other pediatric instruments (particularly the CHU-9D) are more widely employed, largely because they have existing value sets. This project will develop this value set for the EQ-5D-Y-3L using the recently accepted protocol, combining face-to-face TTO tasks and online DCE. Interviews will take place in three Australian centres/states (Perth (Western Australia), Melbourne (Victoria), and Sydney (New South Wales)), and in regional centres in each of the three states. Rigorous quality control methods will be used to minimise interviewer effects. We will extend the standard methodology by allowing exploration of different ways of anchoring the latent scale DCE data using the TTO data (or not). This will be done using the TTO data exclusively (either the worst health state 33333 or all the TTO data), or by including additional paired DCE tasks containing either duration or dead, both of which can be used as anchoring devices.richard.norman@curtin.edu.auValuation, Youth135918Ongoing20202023
96-EOKnowledge translation for the use of EQ-5D as a PROM for routine outcome measurement in health systemsOur 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.Populations and Health Systems, Education and Outreach24116Completed20202021
92-2020RAInvestigating the effect of interaction terms in modelling EQ-5D value set and its impact on sample size requirements using three VAS saturated dataA 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_cn@126.comValuation30580Ongoing20202023
85-RAComparing the psychometric properties of EQ-5D-Y-5L and EQ-5D-Y-3L in children with osteogenesis imperfecta in ChinaThe 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.richardhxu@cuhk.edu.hkYouth16295Completed20202022
119-RAA qualitative study on the content validity of the EQ-5D-5L and EQ-PSO bolt-on in patients with psoriasis in HungaryObjectives: 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@gmail.comDescriptive Systems24990Completed20202021
127-RADeveloping Scoring Methods for the 25-item EQALY InstrumentThe 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@med.uni-tuebingen.deDescriptive Systems, EQ-HWB81430Completed20202021
84-RAAssessing the impact of COVID-19 on population health using the longitudinal panel surveys in the US, Sweden and Norway1. 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 vaccinationningyan426@hotmail.comPopulations and Health Systems24480Completed20202020
74-RAGeneral public EQ-5D measurement before and during general Covid-19 quarantine in SpainIn order to limit the spread of Covid-19, many countries, Spain included, have implemented unprecedented restrictions, such as quarantines, curfew, isolation, school closings, restricted opening hours in stores, business closures, etc. The impact of such measures on the (HR)QoL of the general public is unknown. On March 15th 2020, the Spanish government implemented “nationwide lockdown” (general curfew) for at least two weeks. We have a general population baseline using EQ-5D-5L-Y from 500 general population adult individuals in from the preceding weekend. This provides an unusual scientific opportunity. We propose to conduct 3-5 EQ-5D-5L follow-up surveys in Spain, each targeting 500 general public adults, to track the HRQoL of the population as a function of time in quarantine. Each of these surveys come at a cost of 1,5K Euros. We propose to do two follow-ups under the planned curfew, starting immediately, and one a week after the curfew is lifted. However, we wish to conduct more follow-ups if the curfew is extended, every two weeks. Results comparing the pre-quarantine survey and the two first in-quarantine surveys will be submitted to a high-ranking journal ASAP. Depending on findings and other developments, a follow-up paper may be produced after the lockdown is lifted.jramos@axentiva.comPopulations and Health Systems16920Ongoing20202020
2016030A 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.Others210714Completed20152017
20190510Design 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 researchersThe 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.Populations and Health Systems156995Ongoing20212023
60-VSGenerating an EQ-5D-3L value set for the Hashemite kingdom of JordanPCR174 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.Valuation13940Ongoing20202022
59-VSValuing Health-State: An EQ-5D-5L Value Set for Uzbekistan populationIntroduction: 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@yahoo.comValuation57200Ongoing20202024
20200020Establishment of a UK EuroQol Group and initial 1 day meetingWe propose to organise a one-daymeeting in the UK for researchers with an interest in the development and application of theEQ-5Dor other EuroQol measures. The meeting is designed to be researcher-led and aimed at UK and Ireland based researchers primarily. This is a day to discuss EQ-5D related research issues (e.g. DCE/TTO valuation, E-QALY development, non-economic applications of EQ-5D etc , as examples) rather than the use of the tool in clinical studies. The intention and purpose here is to 1.Support the development of early career researchers/ students who are interested in EQ-5D application & methods2.Provide a forum for non-EuroQol members to discuss and debate their EQ-5D related research (with a focus on methods rather than use of the tool)3.Provide a day for academic researchers, NICE/ SMC employees, industry and others to networkand so therefore facilitate more EQ-5D related research in the UKEducation and Outreach18180Ongoing20202022
20200010Describing the Worse than Dead in Youth ValuationPurposeTrading 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.Valuation, Youth13366Ongoing20202021
20191070A comparison of methods to evaluate DCE response qualityObjectives: 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.Valuation42840Completed20202020
20190900An investigation of the ‘shrinking factor’ model for predicting vision and cognition bolt-on values elicited from the general publicObjective: 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.Descriptive Systems, Valuation56400Ongoing20202023
20191210Testing of the ranking exercise -EUQ2137080 (TRF2191) - English (US) | Face Validity ResultsThis 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.Others24000Completed20192020
20190580Severity 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.Valuation383641Ongoing20202025
20191110Meeting Asia Policy Makers at HTAi 2020Efficient 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.Education and Outreach19800Ongoing20202023
20191000Testing the appropriateness of EQ-5D in a socioeconomically disadvantaged populationHealth 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.Descriptive Systems12550Ongoing20202020
20191020Estimating an EQ-5D-Y value set for ChinaIntroduction: 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.Valuation, Youth45540Completed20202021
20180750Developing a value set for the child-friendly EQ-5D health-related quality of life instrument EQ-5D-Y in Hong KongThe EQ-5D-Y is currently useto assess health-related quality of life of health states experienced by young populations.However, no country-specific EQ-5D-Y value set is currently availableand recent research has shown that just applying adult value sets to EQ-5D-Y states is not appropriate.Developingvaluation studies for younger population presents challenges to study design and normative problems not present or important in adult valuations.In The proposed study aims to develop avalue set for theEQ-5D-Y in HKfollowing the recommended valuation proposal for EQ-5D-Y studies by the EuroQol Group. The study will include a discrete choice experiment (DCE) exercise to estimate the relative importance associated to each EQ-5D-Y level in each dimension, and a composite time-trade off (C-TTO) 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 will be administered face-to-face in computer-assisted personal interviews by trained interviewersusing the EQ-PVTplatform.DCE and c-TTO responses will be collected using adults from the general population and two different perspectives: adults responding the elicitation tasks from a child perspective and adult’s own perspective. Preferences for both perspectives and elicitation mode will be compared to identify differences and potential impact in real practice. The final value set will be estimated using responses from the child perspective.Valuation, Youth0Ongoing20192021
20191010Psychometric properties, feasibility and usefulness of the extended EQ-5D-Y-5L in children with prevalent disease conditions in EthiopiaBackground: 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.Youth23550Completed20192020
20190980Exploring experiences among adults and adolescents of health state valuation for the EQ-5D-Y-3L - a qualitative studyPurpose: 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-offYouth17900Completed20202021
20191180Improved 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 instrumentsAims: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.Valuation87931Ongoing20202021
20191040Learning from 5L valuation studies : Investigating differences in preference structures5L 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.Valuation20000Completed20192020
20180301Extension to 20180300: What aspects of quality of life are important to people with experience of cognitive or visual impairment? A qualitative investigationThere 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.Descriptive Systems14800Completed20202022
20190151extension of 20190150: Exploring non-iterative time trade-off methods for valuation of EQ-5D-5L health states: an on-line experimentThis proposal is an extension of analready approved study proposal EQ-Project 20190150R1: Exploring non-iterative time trade-off methods for valuation of EQ-5D-5L health states. In that proposal, we aimed to test two non-iterative time trade-off methods (non-stopping and open-ended time trade-off)using face-to-face interview. Encouraged by the discussions of the online cTTO study in the Brussels Plenary Meeting, we felt the non-iterative TTO methods may have the potential advantages for online administration.Therefore,in this proposal, we aim to develop and test the online version ofthese two non-iterative TTO methods, as anadditional component of the approved study.Valuation23350Ongoing20202023
20191030Investigating response heterogeneity in the EQ-5DSystematicdifferences 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 datasetsPopulations and Health Systems52400Ongoing20202024
20190780Valuation 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 factorsRespondents’ location; 13 mainregions of KSA Different age groupsGenderEducationEmploymentEligible 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 developmentIRB submissionsRespondents’ recruitment, field Interviews, data collection &quality checksData analysis & reportingValuation0Ongoing20192021
20190600Does EQ-5D cover the most undesirable health problems in different cultures? A study of seven countries using a mixed methodsWhen 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 inDescriptive Systems172632Ongoing20202023
20180710Valuation of EQ-5D-5L in Uganda and exploration of a ‘lite’ protocolThe 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.Valuation47579Completed20202021
20190920Understanding 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.Youth38000Completed20202021
20191050Using EQ-5D to inform real-world decision making : a cross-sectoral perspectiveMultiple 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.Education and Outreach11390Ongoing20192023
20190440Proposal of the 2nd EuroQol Asia Academy MeetingEQ-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.Education and Outreach67500Completed20222022
20190370Compare the TTO and DCE modelling results on individual levelBackground 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.Valuation33720Completed20192020
20170491Valuing Health-Related Quality of Life: An EQ-5D-5L Value Set for Belgium: Request for budget extentionThe 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.Valuation0Completed20172019
20190630EUROQOL Satellite Symposium - Applying Quality of life Measurements for Clinical and Economic Researchn 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 decisionEducation and Outreach17976Completed20222022
20190670Cross-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 ProxyBackground 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.Descriptive Systems, Youth8851Completed20192020
20190230R1Preference heterogeneity in health valuationTo 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.Valuation42950Completed20192020
20190350A comparison of DCEs with choice sets of size 2 and DCEs with various choice set sizes for the valuation of the EQ-5DRecent 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.Valuation14675Completed20192020
20190130The performance of EQ-5D-5L in various disease groups with different durationsThe recall period of ‘today’ used in EQ-5D is different with other health-related quality of life questionnaires, for instance using‘pasttwo weeks’ or ‘during the past 4 weeks.’ Different types of illness: chronic, acute and periodic attackimpacted HRQOL of its patient in different ways. Yet no previous investigation comparing different recall periods with the one being used in EQ-5D and how they will affect the way patients/respondents respond to EQ-5D.A sample of 675 patientsfrom 9groups: 50 patients with tuberculosis, 75 HIV/AIDS, 100 T2DM, 75 dengue, 75 typhoid, 75 traumatic injury, 75 asthma, 75 Allergic rhinitis, and75 psoriasiswill be invited to participate in this study. For the chronic ones (Tb, HIV/AIDS, T2DM), patients will complete severalrecall period versions(i.e.today, past week, past month) in the first month, followed by monthly data completionfor 5 months. For the acute ones (dengue, typhoid, traumatic injury), two consecutive data collection will be done: the first day of hospitalization and the day of hospital discharge. Recall period to be asked are: ‘today’and ‘since the first day you are hospitalized’. For the periodic attackones (asthma, allergic rhinitis, psoriasis), modified recall period will be ‘last time you experienced the illness’in two times data collection. A subset of each group will be interviewed in-depth to elaborate what do they think and how do they decided when they completed the EQ-5D-5L using the different recall periods. Feasibility, test-retest, responsiveness, and correlation with relevant disease specific will be analyzed between different recall periods and severity level. This investigation will provide insight of how EQ-5D performs in these various diseases with regard to difference of duration and fluctuations of severity.Descriptive Systems35600Ongoing20192023
20190290Malaysian EQ‐5D‐5L Value Set Symposium and WorkshopA 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.Education and Outreach20097Completed20192019
20190470Bringing Patients Back to the PROM. Development and delivery of a workshop to promote the use of the EQ-5D to inform patientsA 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.Populations and Health Systems36450Completed20202020
20190310Extending the QALY Valuation Study in EnglandObjective: 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.Valuation201450Completed20202020
20180340R1Trickling 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.Valuation14600Completed20192019
20190690Understanding the routine collection and use of EQ-5D data in large-scale applications within the healthcare system (Apersu supports)See attached reportPopulations and Health Systems241000Ongoing20202023
20190200Validation of the Chichewa versions of the EQ-5D-Y-3L and the EQ-5D-Y-5L in MalawiObjectives 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.Descriptive Systems14200Completed20192020
20190430Efficient designs for valuation studies that use DCEs with mapping to TTO health statesThere 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.Valuation39917Ongoing20202023
20190020QALY 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).Descriptive Systems15000Completed20192019
20180470Chronic disease, co-morbidities and health-related quality of life in a representative sample of the New Zealand populationEarlier 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.Valuation9700Completed20192019
20180450Extending the QALY – Psychometric testing of the items in Germany to support the item selection for the new measureObjectives: 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.Descriptive Systems, EQ-HWB16900Completed20192019
20180670EQ-5D-3L as an outcome indicator: analysis of its performance in a longitudinal study of patients receiving palliative careIt 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.k.spencer@leeds.ac.ukPopulations and Health Systems17532Completed20192019
20180310Non-parametric approach to valuing the EQ-5D-5LIn 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.Valuation28600Completed20182019
20190260Budget transfer from international Psychometric surveys to TUOSData collection budget to test the psychometric performance of candidate items for the EQALY measure. Linked to projects: 20180600, 20180580; 20180520; 20180460 and 2018 0450Descriptive Systems, EQ-HWB76216Completed2018
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 inequalityStudy aims:Explorationin a large 3-country dataset(UK, IT, NL):(part 1) the potential of the EQ-5Das an outcomemeasure in health inequality analysis, relative to an Overall Health Satisfaction (OHS) measure(as used in population surveys) and EQ-VAS;(part 2)the potential of the EQ-5Das determinantin income inequalityanalysis,as opposed to Health Satisfaction and EQ-VAS.Throughout the study 3L -5L comparisons are included, and an investigation of possible differences between countries and translations. Partof the study process is a consultation of the Health Inequalities SIG.Standard techniques are usedto describe and analyze inequalities(Gini; Concentration Index, Slope Index of Equality (SII), Relative Index of Equality (RII); decomposition analysis).Results are set against available literature both in terms ofcountry inequalities level and psychometrics with regard to 3L vs 5L.This study on focusses on the performanceof EQ-5Din this area, noton comparing methodologicalapproachesto inequality analysis.Methods:Three representative population datasets are available(each n>3500),for which country-specific value setsareavailable (except for 5L in onecountry).All analysis will be performed with and withoutstandardizationaccording to theEuropeanStandard Population. Part 1. A. Comparison of country-specific differences in health status, measured with the EQ-5D (Level SumScore, utility), by country (UK vs. Netherlands vs. Italy); in terms of descriptive statistics,and in terms of inequalities.B. Stratification of respondents according to health complaints; re-assessment of average health leveland inequalities. A. and B. will result in the reference data for C.C.Repeat the preceding analyses with OHS and EQ-VAS to assess congruence with EQ-5D results. D. Deductionfrom the results whichEQ-5D outcome choice performs best (across countries), and whether 3L or 5L shows better results.From country-specific patterns of inequalities (3L-5L) and additional analysis on distributionsit will be assessedwhether differential response functioning and/or translation bias exists,and if it influences previous conclusionson inequalities.Differencesbetween results according to the Level Sum Score (LSS)and the country-specific utilities are tested. Part 2.A. Determination of EQ-5D impact (in terms of dimension, categorized LSS, deciles of utility-score; the continuous scores of LSSor utility; 3L vs.5L) on household income as suchand on income distribution(men/women separately). B. Determination of best performing use of the EQ-5D (ranked data). We will check the EQ-VAS as determinantsimilarly. Part 3(during Part 1/2). Presentation of preliminary results and choices during face to face health inequalities special interest group (HISIG)meetingto further discussion on best use of EQ-5D. Results:Performance of EQ-5D in equality analysis (relative to other measures) as outcome and as determinant; within this: performance of options within EQ-5D, e.g. 3L vs. 5L. Additional: information on potentialbias through language and other effects. Further: discussion support of the HISIG.Populations and Health Systems69700Ongoing20192024
20180350Extending the QALY Valuation Study in the UK: A feasibility study of applying different valuation methods to a health and wellbeing classification systemOBJECTIVES: 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.Valuation48775Completed20192020
20180770An EQ-5D-5L value set for the Swedish populationThe 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)Valuation80000Ongoing20192021
20180260Testing the robustness of the German EQ-5D-5L value set for people with health impairmentsObjectives: 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@uni-bielefeld.deValuation14400Completed20182019
20180490Test of the minimal number of C-TTO states in the valuation protocol of the EQ-5D-3L-YBackground 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.Valuation, Youth29609Completed20192020
20180620Validation and Comparison of the Psychometric Properties of the EQ-5D-3L-Y and EQ-5D-5L-Y in the United StatesAim: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).Youth29200Ongoing20192023
20180730Validation of the UK English version of EQ-5D-Y-5L in South AfricaBackground: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.Youth45680Completed20192020
20180300Development and psychometric testing of EQ-5D-5L bolt-on descriptors for vision and cognition: A study in the UK and AustraliaThe 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.Descriptive Systems118785Ongoing20192024
20170520Development of health-related quality of life (EQ-5D-5L) value set for IndiaThe 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.Valuation0Ongoing20172019
20180290Generation of an EQ-5D-5L value set for the Mexican populationAim: 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.Valuation0Completed20182020
20180170R1Evaluation of routinely Measured PATtient reported outcomes in HemodialYsis care (EMPATHY) Trial: A Cluster Randomized Controlled TrialThe 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.Populations and Health Systems46983Completed20182020
20180130The EQ-5D-5L valuation study in EgyptBackground: 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.Valuation0Completed20182020
20180040R1NARelative 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.Valuation8800Completed20182023
20180150Furthering the DCE research agenda: Comparing anchoring and design methods for the valuation of EQ-5DRecently there has been debate within the EuroQoL Executive Committee and Valuation Working Group (VWG) about whether it is appropriate to use DCE as a stand-alone valuation method, and a form of DCE with durationwould potentially be a strong alternative. Two approaches that have been recently with promising resultsinclude presentingtriplets including pairs of EQ-5D-5L health states with duration, and a third option of either ‘immediate death’or ‘full health’. Questions about the optimal way to design the experiment are also important, and the two triplet methods have used theoretical (generator based) and algorithm-basedapproaches to selectingan efficient design.Further workabout these methods is requiredto support the executive committee in their decision making around the use of DCE. To inform this, the EQ-VT studiescurrently being carried out in Denmark and Peru have included an additionalset of questionsat the end of the face-to-face EQ-VT interview to collect data onboth approaches developed using both methods of generating the designed experiment. This results in four designsfor testing:1.Tripletswith immediate death developed usingagenerator design(usual method)2.Tripletswith immediate death using an efficient algorithmicdesign3.Tripletswith full health developed using agenerator design 4.Tripletswith full health developed using an efficient algorithmicdesign(usual method)The aim of this proposal isto requestfunding support for further analysis and dissemination of thedata from thePeruvian and Danish triplet add on studiesthat arecurrently underway.Valuation14800Ongoing20182019
20180190MSc student project placements on a EuroQol-related topicBy 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.Valuation, Education and Outreach7100Completed20182018
20180140Validity, Responsiveness and Test-Retest of EQ-5D-3L-Y and EQ-5D-5L-Y and their proxy versions in Pediatric Patients in IndonesiaThe 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 moderateYouth35263Completed20182022
20180160Testing 4 cognition bolt-on items in a community dwelling elderly groupIn responseto the 5thjoint call for proposals, we would like to submit this proposal to test 4bolt-on items for cognition. Several studies have identified cognition and vision as areas where the EQ-5D may be strengthened with bolt-on items in order to achieve wider usage. Some research has been conducted for cognition bolt-on candidates, but the measurement properties of cognition bolt-on items are hardly tested. In this study, we aim to test 4 candidate cognition bolt-on items for their psychometric properties and added value to the EQ-5D-5L in a community dwelling elderly group (N=500 to 600). We focus on discriminatory power of the cognition items and the new index score that may be generated from a cognition bolt-on EQ-5D-5L.Descriptive Systems16000Ongoing20182019
20180070R1Use EQ‐PVT to develop a cancer patient preferences based EQ‐5D‐5L value setObjectives: 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.Valuation10250Completed20182019
20170640Testing the potential of multiplicative models for efficient EQ-5D bolton/off valuation study designPrediction 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.Descriptive Systems, Valuation42300Completed20182019
20170310R2Interval 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.Valuation22375Completed20172023
20170530A Chinese value set for the EQ-5D-YThe 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 ChinaValuation14450Completed20182018
20170470Recent 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 ChoiceExperimentsEQ-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.Others12602Completed20172017
20170230Estimating the EQ-5D-5L Value Set for the PhilippinesThe 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.Valuation25080Ongoing20172024
20170290Testing and comparing the Spanish version of EQ-5D-3L-Y and EQ-5D-5L-Y in general and cancer young populationBackground. There is a need to compare the performance of EQ-5D-3L-Y and EQ-5D-5L-Y, and there is no validation of none of them in young patients with cancer, one of the most relevant and prevalent market in children. The aim is to assess and compare the psychometric properties of the Spanish version of EQ-5D-Y of to classification system (5 and 3 levels) and its validation in general and young children with cancer.Participants 1400 children and adolescents (8-18 years old) from primary and secondary school of Extremadura, Castilla-León and Andalucía (Region of Spain) and 100 children with cancer from Region Associations of Cancer respectively will take part of the study. Methods. A core set of questionnaire will apply to assess the HRQoL composed by EQ-5D-(3L&5L)-Y, Kidscreen-27, SDQ questionnaire, Cantril Ladder and VAS. Statistics descriptive, missing values and reliability method will perform to analyses the aim of this research. To compare the performance of 3L-Y AND 5L-Y will apply the Shannon index and the Shannon Evenness indexto assess discriminatory power in the VAS for each level of dimension in both 3L and 5L questionnaires.Youth14900Ongoing20172023
20170360PROMs 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 affectedBackground 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.Populations and Health Systems33350Ongoing20172018
20170280Revisiting EQ-5D-3L tariffs – An international collaboration between Slovenia end PortugalIntroduction: 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.Valuation15000Completed20172017
20170330Psychometric validation of the Chinese version of EQ‐5D‐Y for China in three medical conditionsAim: The Chinese version of EQ‐5D‐Y for china was recently developed accroding to the EuroQol Group’s translation guidelines. However, the measurement properties of this new EQ‐5D‐Y langauge version is unknown.This study aims to pscychometrically validate the Chinese version of EQ‐5D‐Y for China in three patient populations, including children and adolescents with juvenile idiopathic arthritis, congenital heart disease, and childhood leukemia. Methods: The Chinese EQ‐5D‐Y questionnaire will be administered together with Pediatric Quality of Life Inventory (PedsQL, a valdiated HRQOL instrument in China) to children and adolescents with juvenile idiopathic arthritis, congenital heart disease,and childhood leukemia (100 cases for each condition) seen in two tertiary hosptials in Shanghai, China.Clinical data of the study samples will be retrieved from medical records and the young patients who are in stable health status will be asked to complete the EQ‐5D‐Y questionnaire a second time within a week. A group of 200 healthy school children and adolecents will be asked to complete the EQ‐5D‐Y anf PedsQL questionnaires. Validity will be assessed by testing a priori hypotheses relating EQ‐5D‐Y to PedsQL and clinical measures. Test‐retest reliability will be evaluated using Cohen’s kappa statistic for the 5 EQ‐5D‐Y dimensions and the intra‐class correlation coefficient for the index score (using the EQ‐5D‐3L value set for China since no EQ‐5D‐Y value sets are avaialble) and EQ‐VASYouth31900Ongoing20172018
20170180An EQ-VT study of heart disease patientsOriginally 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.Valuation0Completed20172018
20170010Guidance on methods for analysing data from EQ-5D instrumentsAt the heart of the EuroQol Group’s vision and mission statements is an ambition “to support individuals and organizations across the world seeking to use those instruments” and “to actively promote the transfer of knowledge and evidence regarding the use, analysis, and interpretation of measures developed by the EuroQol Group” http://www.euroqol.org/euroqol/mission.html. Yet, despite nearly 30 years of the use of EQ-5D and related instruments developed by the EuroQol Group across the world, we have never provided comprehensive guidance to users on how to analyse the EQ-5D data they have collected. The User Guides focus on the collection of data. Brief guidance is available to users of EQ-5D value sets (Devlin and Parkin 2006 ). Krabbe and Weijnen (2003) touch on some ways of analysing EQ-5D profile data, but it is not a current reflection of available methods. Despite widespread use of EQ-5D, it has been noted that the data “are often under-reported, and inadequately analysed. The bottom line is – if you collect these data from your patients, you should be committed to making sure you learn as much as possible from what they tell you” (Devlin 2016 ). A particularly common weakness is to restrict analysis to the EQ Index, without analysing the profile data or EQ-VAS. The aim of this project is to produce “Guidance on analysing EQ-5D data”, drawing together the various ways in which EQ-5D data (EQ-5D profiles, EQ-VAS and EQ Index) can be analysed and reported, and providing clear guidance to users. The Guidance will be accompanied by open-source code in R, STATA, SPSS and SAS, to ensure it is as accessible as possible to all potential users, and the production of a slide deck which can be used in training workshops and webinars. Our goal is to ensure that, where EQ-5D data are collected, whether from patients or the general public, users are encouraged to make full use of those data to gain insights that ultimately help to improve patient care and peoples’ health.Education and Outreach36225Ongoing20172017
20170020Comparison of different model specifications for the frequentist estimation of random effect hybridThe 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’.Valuation22200Ongoing20172023
2016650A qualitative approach to understanding what aspects of health are important to people Ð Australian extensionThe March 2016 call for proposals states the following: “given that the EuroQol Group operatesglobally, generalizability of the importance of dimensions of health is not only relevant between different types of populations but also across cultures/countries”.Recently a project with the same team as this proposal (PI Koonal Shah)titled “A qualitative approach to understanding what aspects of health are important to people” was funded. Key aims of that project includedevelopingand piloting an approach to identifywhat aspects of healthare important to people and to obtain the views of patients and members of the public about what aspects of health are important to them. The project includes four stages:Stage 1: Review of English language definitions of key conceptsStage 2: Development of a survey designed to understand what aspects of health are important to people, with piloting in a focus groupStage 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, Stage 4: Checking / triangulation of the stage 3 results using a second focus groupGiven the need to understand what aspects of health are important to people internationally, the aim of this research project is to extend the Shah et al proposal to repeat Stage 3 with an Australian population (including general population and patient groups) using the same survey.Both the DSWG and exec reviewer noted that a limitation of the Shah et al project was that it was UK only. This extension is designed to address those concerns by covering a different culture and region.The study is a low cost extension to collect data from a second English speaking country using the same methodology(in line with DSWG recommendations), and will inform the ongoing research agenda around the measurement of health and health-related quality of life beyond the existing EQ-5D descriptive system.Descriptive Systems19750Ongoing20172017
2016750EQ-5D-5L in pregnancy. Antenatal and postnatal HRQOL, the impact of poor outThe 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).Populations and Health Systems14950Ongoing20162017
2016710Going beyond health related quality of life – towards a broader QALY measure for use across sectorsAbstract 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.Descriptive Systems94367Completed20172018
2016640Building values sets based on TTO results by averaging model predictions and actually observed meansTo 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.Valuation23400Completed20172023
2016610A 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-5LObjectives: 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.Descriptive Systems14850Ongoing20162019
2016580The feasibility of using the EQ-VT program to conduct the EQ-5D-5L valuation study in rural ChinaBackgroundThe 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.Valuation15000Ongoing20162023
2016540Health utilities used in economic evaluations of cancer treatmentsCost-utility analysis has been widely used in economic evaluations for cancer treatments, which is required to inform coverage and reimbursement decisions in many countries. Health utilities are a key set of measures to capture health benefits to which many economic evaluations are often found sensitive. We will use cost utility analyses included in the Tufts CEA Registry to identify the source studies on health utilities for cancer patients. By reviewing and extracting all these source studies, we aim to 1) understand to what extent the EQ-5D has been used to measure health utility in oncology cost utility analysis; and 2) identify whether or not the use of health utilities in oncology economic evaluations has been appropriate. Proper use of health utilities for cancer economic evaluation is extremely important given their implication in resource allocation decision-making.Populations and Health Systems14958Ongoing20162017
2016460TTO valuation sets for EQ-5D-3L – country comparisonThe 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.pcubi-molla@ohe.orgValuation46000Ongoing2016
2016260Comparing DCE designs that can be used to value EQ-5D-5LThe use of Discrete Choice Experiments (DCE) to estimate values for EQ-5D has grown in recent years. To estimate the parameters with confidence, a key feature of these studies is the method used to select the choice sets to be valued. However studies comparing designsdeveloped for the purpose of valuing EQ-5D that usedifferent construction methods and different software have not been carried out. Also the impact of sample size across designshas also not been fully investigated. The aim of this project is to use simulation methods and primary data to compare three prominent approaches to the design of DCE studies usingEQ-5D-5L.The approaches are:Approach 1: An optimal generator developed design Approach 2: An Ngene developed D-Optimal design with zero priors using a modified Federov swapping algorithmApproach 3: An Ngene developed D-Optimal design with non-zero priors using a modified Federov swapping algorithmWe willtest the approaches using a DCE presenting pairs ofEQ-5D-5L profiles. Three designs for each approach including 100 choice setswill be developed.Firstly all designswill be explored using simulationto assessthe ability of each design to return an unbiased estimate of each of a number ofan assumed set of coefficients. Secondly, data will be collected online for thedesign from each of the three approaches that the simulation testing suggests is the most efficient. This will allow for primary data comparisons of the models across the approaches and in comparison to the results from the simulation stage.Valuation34000Ongoing20162017
2016230The use and research of EQ-5D instruments in East and South-East Asia: a systematic reviewThe use and research of EQ-5D in Asia are both increasing. However,it is not entirely clear how strong is the increase or what populations have be involved. Furthermore, for the use of the instrument in the region, what are the primary and secondary purposes of usage is unknown; for the research of the instrument, how EQ-5D has been assessed and to what extent it has been found to be appropriate for use in Asians are still elusive. The aims of this project are 1) to describe the use of EQ-5D, and 2) to summarize the measurement properties of EQ-5D in east and south-east Asian populations where the vast majority of the researchand use of EQ-5D in Asia is from. To achieve the study aims, we propose asystematic review approach to identify and analyse the relevant publications in the literature.A systematic literature review(SLR), following the Cochrane guideline, willbe conducted. The search will target at relevant publications using data fromthe following Asian-Pacificcountries: China(includingHong Kong), Indonesia, Japan, Malaysia, the Philippines, Singapore, South Korea, Taiwan, Thailand, and Vietnam. Atwo-stage SLR has been designed: a review covering major electronic databases will be conducted first as stage one; following by stage two where non-English papers published in local peer-reviewed journals which are not indexed in the major electronic databaseswill be hand-searched. The search will cover the period from 1995 to 2015, with no language restriction.Education and Outreach74000Ongoing20162017
2016410The impact of color coding and the optimal degree of overlap in discrete choice experiments2016410 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.Valuation19375Completed20162016
2016250The relationship between the EQ-5D and surgical outcomes in a large Australian registry of percutaneous intervention patientsQuality 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.Populations and Health Systems15000Completed20162022
2016280Valuing EQ-5D-5L in Australia: A comparison of the EQ-VT protocol and DCE with durationThe 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.Valuation80000Ongoing20162024
20160502-day entry level course describing development and current status of EQ-5D "technologies" for Russianot availableEducation and Outreach4350Ongoing20162016
2015090Revisiting the MVH study: new methods for modelling UK valuations for the EQ-5D-3LBackground: 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.Valuation36000Completed20152016
2015250Intercept 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: In all published EQ-5D tariffs, both for the -3L and the -5L versions, the drop in HRQoL associated with the movement from state 11111 to the second best state is greater by two orders of magnitude than any other single incremental impairment. One hypothesis that has been proposed is that this drop is related to the wording of “full” or “perfect health”, as opposed to the less perfect state 11111. However, when tested, this hypothesis has not found support in empirical data. That leaves two primary candidate explanations for the drop: it might reflect “true” preferences, or it may be an artefact stemming from a tendency among respondents in valuation studies to strengthen contrast in the valuation tasks.Valuation34750Ongoing20152017
2015420A City-wide survey of HrQoL in children using EQ-5D-YYouth15274Ongoing20152015
2015120Making LIFE simple: Exploration of a hybrid of best-worst scaling and visual analogue scale in valuing EQ-5D-5LThe 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.Valuation59450Completed20152017
2013300The impact of framing effects on EQ-5D-5L valuationsDiscrete 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.Valuation172300Ongoing20142015
2013220Feasibility of the use of EQ-5D in quantitative benefit-risk assessmentAim: 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.Others33000Ongoing20132014
2016590Extension of Variability in DCE Results Ð October 2016Background: 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.Valuation9500Completed20162017
201802702nd EQ-5D training workshop for ChinaA 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.Education and Outreach9400Completed20182018
2013170Further 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.Valuation80145Completed2013
20170480Valuing Health-State: An EQ-5D-5L Value Set for EthiopiansObjectives: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.Valuation28833Completed2017
20180320User-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. 2019Valuation15750Completed2019
20190940Health state utility rescaling and interpersonal comparisonsFunding 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.Valuation12200Completed2020
2014080Comparison of the EQ-5D-5L to measures of well-being and capability in an older populationFormal 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.Others75616Completed2014
20170460Comparison between EQ-5D-3L-Y and EQ-5D-5L-Y in a patient population in Hong KongThis 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.Descriptive Systems, Youth1850Completed20172018
2015050Important aspects of (full) health not captured by EQ-5DBackground: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.Valuation7500Completed2015
2015280EQ-5D-3L in Hematologic Malignant Neoplasms: a Systematic Review of Health State Utility ValuesBACKGROUND: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.Descriptive Systems14800Completed2015
20190030Use of the VAS in the EQ-5D-YBackground: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.Descriptive Systems, Youth9239Completed2019
2015110Estimation of the EQ-5D-5L value set for PortugalAims: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.Valuation47000Completed2015
20170670Extending the QALY project – testing the face and content validity of candidate items within the Australian contextSummary 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.Descriptive Systems, EQ-HWB14963Completed20182018
2014220Temporal variation in population health in Englandnot availablePopulations and Health Systems7500Completed2014
2014070EQVT iteration experimentTTO 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.Valuation159450Completed2014
20180240Developing and testing a new Stata command to calculate country-specific index values from EQ-5D-5L responsesThe 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.Valuation7550Completed20182018
2016370A qualitative approach to understanding what aspects of health are important to peopleThe aims of this research project are:To understand what concepts and definitions should form the basis for a EuroQol generic classification systemTo 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 themTo 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 wellbeingStage 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 groupStage 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 importanceStage 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.Descriptive Systems86500Completed20172018
2012020German tariff for EQ-5D-5LThe 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.Valuation62505Completed2012
2013020A Korean valuation study for the EQ-5D-5LBackground 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.Valuation34500Completed20132016
20170630Understanding Self-perceived Health in Latin AmericaBackground: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.Populations and Health Systems89890Completed2018
20180250The EQ-5D-5L INSTRUMENT: PAST, PRESENT AND FUTUREA 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”.Others9660Completed2018
78-RAMeasuring population health status at a time of national crisisThis online survey is primarily designed to establish normative EQ-5D-5L reference values for the general population of the UK. These will be compared with pre-existing sources, including the UK 5L valuation study. Given that the new survey is being conducted just as impact of the COVID-19 virus emergency is emerging, it is expected that these new data will provide an estimate of this public health “shock”. So as to further maximise the scientific value of the survey, 3 versions of the survey will be used each incorporating a different version of EQ-5D (5L / 3L and Y). It is hoped that by fielding these alternative versions we can test their general correspondence in measuring population health. Given the likely effect of the COVID-19 emergency in influencing self-reported health status a final element has been included in the survey instrument which records an explicit value for the best / worst EQ-5D health states (11111 & 55555) and “dead” using the standard 0-100 EQ-VAS rating scale. This element has previously been used in online valuation surveys of the 3L and 5L forms of EQ-5D. The values for the 2 marker states and difference between them, together with the observed value for “dead” captured by the proposed new survey will be compared with corresponding data from the 2 pre-COVID-19 studies.p.kind@leeds.ac.ukPopulations and Health Systems33807Ongoing20202022
20180430EuroQol 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.Education and Outreach48825Completed20192019
20190910Case-mix adjustment of EQ-5D health profiles for the purpose of hospital performance assessmentThere 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.Populations and Health Systems34660Completed2020
2013060Testing 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 studyYouth2880Completed2013
2016090Developments in preference-based measures of health: scoring approaches and guidanceSummary 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.Education and Outreach13050Completed20162016
2015070Comparing 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.Valuation8500Completed2015
2013200Extension of the labels within the EQ-5D-YThe 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.Youth135400Completed2013
2012060Valuation of EQ-5D-5L health states for healthcare decision making in SingaporeBackground: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 timeValuation29337Completed2013
20180060Testing the face and content validity of E‐QALY domains and items: a study of the Chinese populationThis 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.Descriptive Systems, EQ-HWB15000Completed20182018
2015180Exploring 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.Valuation87870Completed2015
20180600Initial psychometric testing of E-QALY and 3L-5L comparison in ChinaInterim 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 publicationDescriptive Systems, EQ-HWB26400Completed2018
2016070EuroQol workshops back-to-back with ISPOR 7th Asia-Pacific Conference in Singapore on September 3, 2016One 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)Education and Outreach70926Completed20162016
20180660Developing an EQ-5D-3L Value Set and Population Norms for Pakistan – A Pilot StudyIntroduction: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.Valuation19720Completed20192020
20190490ISPOR Issue Panel on child health valuationTitle: 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.Youth, Education and Outreach7600Completed20192019
20180641Insight into the higher health state valuation for children compared to adults: effect of 3 valuation methods. Request for budget extensionINTRODUCTION: 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.Youth14838Completed20192020
2015320A fuzzy approach to time trade-off experiment in EQ-5D-3L valuationAbstractUtilities 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.Valuation27500Completed2016
20190810travel scholarship for Olivia ErnstssonEducation and Outreach7819Completed2019
20180330Is 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 bAbstract 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.Descriptive Systems62073Completed20192020
2014060Separation of the BTD and WTD task in TTOBACKGROUND: 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.Valuation61750Completed2014
2015030Order effects in the EQ-5D item responsesBackground: 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.Valuation35560Completed2015
20190460Valuation of the EQ-5D-5L in ItalyBackgroundItalyis 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.Valuation83950Completed2020
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 studyIntroduction: 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.Youth14875Completed20162016
75-EOPresenting E-QALY study results in 2020 ISOQOLThe 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.
Descriptive Systems19400Completed
20180280EQ-5D-Y valuation study in JapanAs 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.Youth0Completed20182019
2013260Project Save TTO valuationsnot availableValuation10000Completed2013
169-RAValue sets for EQ-5D-5L: A compendium, comparative review & user guideBackground: 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.Valuation89072Completed2020
2014090Prevention 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.Valuation75000Completed2014
2015240EQ-5D-5L VALUATION IN POLANDObjective 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.Valuation80000Completed2015
20170540Validity 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).Youth24510Completed2018
2012010The EQ-5D-5L Valuation Study in ChinaBackground: 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.Valuation61875Completed2012
2016150Two MSc student project placements on EuroQol-related topicsBackground: 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.Valuation10400Completed2016
2016480Analysis 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.Valuation39100Completed2016
71-RADoes the scoring matter? The impact of using different EQ-5D scoring methods on cost-utility results1. 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.j.e.bosmans@vu.nlValuation24440Completed2020
2014160Comparing valuation of the EQ-5D-Y and the EQ-5D-3L: The impact of wording and perspectiveIntroduction: 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.Youth167070Completed2014
2014120LSHA WorkshopPopulations and Health Systems10000Completed2014
20190840Aversion to inequalities in health by EQ-5D domainBACKGROUND: 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 lifeOthers6678Completed2019
2013130The Relationship between Time, Sequencing, and Precision: Considerations for Choice ExperimentsObjective: 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.Valuation24899Completed2013
2015380Alberta EQ-5D end-user conference and APERSU Scientific Advisory Committee meeting fall 2015The 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.Education and Outreach15000Completed2015
2013050Assessing test-retest reliability of the EuroQol Group Valuation Technology in valuing the EQ-5D-5Lnot available yetValuation69332Completed20132013
20170210Testing 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.Descriptive Systems, Valuation9313Completed2017
20170660Extending the QALY. Stage 3: Testing face and content validity with patients, social-care users and carers in ArgentinThe 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.Descriptive Systems, EQ-HWB15000Completed20182018
2016510ISPOR Workshop: DETERMINING UTILITY OF MULTI-ATTRIBUTE HEALTH STATES: NEW MEASUREMENT AND ANALYTIC APPROACHESWe 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.Valuation9885Completed20162016
2016420A 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.Education and Outreach29300Completed20162017
2014050Hong Kong participation BTD-WTD split experimentValuation9443Completed2014
2016020EQ DCE: Crowdsourcing innovation in valuation specificationABSTRACT 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.Valuation123632Completed2016
20180650An international meeting of health system users of EQ-5D in routine outcomes measurementThis 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.Populations and Health Systems, Education and Outreach29815Completed20192019
2013210HTA and quality of life measurement in patientsOthers0Completed2013
2015400Development of EQ-5D-Y-3L norms data based on a general population sample of children and adolescents in Swedennot availableYouth29950Completed20152016
2014020Supplementary funding 5L value set study England: LSEValuation57794Completed2014
2015310The impact of duration on EQ‐5D‐5L value sets derived from a Discrete Choice Experimentnot availableValuation31200Completed2015
20180560Non-Linear Time Preferences in Discrete Choice ExperimentsIntroduction 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.Valuation14800Completed20192019
2016220An individual-level comparison of EQ-5D-5L values derived from paired comparison and best-worst dataIntroduction: 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;Valuation38250Completed20162017
20190500Funding 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)Education and Outreach74030Completed20202020
2013070Deriving 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.Valuation50796Completed2013
20180610An investigation of constructing EQ-5D-5L value sets by censoring time-trade off data at 0One study submitted to the EuroQol Plenary meeting for discussion.2.One manuscript submitted to an International peer-reviewed journal for publication.Valuation14200Completed2018
20190410US population norms for the EQ-5D-5LAim: 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.Valuation17600Completed2019
2015060EuroQol past, present & future publicationEducation and Outreach13500Completed2015
2016200Clik 2016Populations and Health Systems16535Completed2016
2016120A 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 studynot availableYouth5000Completed20162016
2015080Valuing EQ-5D-3L health states in a representative sample of the Colombian population : a proposed retest extensionValuation0Ongoing2015
2013090Course Title: Discrete choice for health state valuationCourse offered to EQ members in 2013. Faculty: Estehr de Bekker-Grob, Marcel Jonker, Elly StolkEducation and Outreach9450Completed20132013
2016010Writing up a manuscript titled 'Estimating a time trade-off EQ-5D-5L value set for China' for publicationBackground: 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.\Valuation4500Completed2016
2012040Bolt-on proposalOver 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.Descriptive Systems40950Completed20122013
2012050Extension EQ-5D-5L study England for other UK countriesEarlier 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.Valuation51226Completed20192020
20190960An exploratory analysis of the Pain/Discomfort dimension of the EQ-5D-5L in people living with physical and mental health conditionsResearch 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.Descriptive Systems15000Completed2020
2015040Using routine collection of the EQ-5D to enhance shared decision making: a proof of concept studyThe 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 surgeryPopulations and Health Systems9400Completed2015
2015430The impact of overlap and color coding on response efficiency in discrete choice experimentsObjective 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.Valuation59725Completed2015
20190080R1Correcting bias in time trade-off within the EuroQol Valuation TechnologyBackground: 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.Valuation46750Completed2019
2016240Assessment of the EQ-5D-5L compared to EQ-5D-3L and generation of population norms in EnglandThere 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 5LDescriptive Systems16000Completed20162016
2013310Test of reference dependency in EQ-5D-5L health state valuationsBackground: 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.Valuation28200Completed2013
2013120Rescaling relative health-state values from discrete choice experiments unbiased onto the QALY metricBackground: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.Valuation30000Completed20132016
2016340Uses and applications of EQ-5D in Latin America & the Caribbean - Systematic Review and bibliometric studynot availableEducation and Outreach14992Completed2016
2015470International Analysis of Income-related Inequity in Self-assessed Health Using the EQ-5Dnot availabePopulations and Health Systems15000Completed20152016
2009018measuring population health status using a web-based implementation of EQ-5DOthers9488Completed
2016180Exploring the possibilities for developing a EuroQol instrument for use in very young children: a workshop on feasibility, relevant issues, and potential methodologyLiterature 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)Youth14821Completed2016
2016110EQ-5D-5L valuation in Poland: a methodological extensionObjective 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.Valuation29850Completed2015
20170600Comparatively 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 approachesIntroduction: 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.Descriptive Systems29700Completed20182018
2016210Measuring concordance between patient and proxy raters of EQ-5D using fuzzy set theoryBACKGROUND: 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.Valuation7500Completed20162016
20190250Psychometric testing of proxy EQ-5D-5L-Y in caregivers of paediatric patients with idiopathic scoliosisProxyEQ-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.Youth7300Completed2019
142-RAPerformance of the EQ-5D-Y Interviewer Administered Version in young children aged 5-8 yearsBackground: 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.victor_janine@yahoo.comYouth38392Completed2020
2015300QALY-balanced DCE designs for health state evaluationsBackground: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.Valuation49250Completed2015
2016390Analyzing 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.Populations and Health Systems15000Completed20162017
20190150R1Exploring non-iterative time trade-off methods for valuation of EQ-5D-5L health statesIntroduction: 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.Valuation68600Completed2019
2014130Understanding the relationship between health behaviors, attitudes and perceptions of HRQL using the EQ-5DBackground: 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.Valuation21000Completed2014
2015370EQ-5D: the ABC approach to measuring and valuing health in Latin America (W15 workshop: 5th ISPOR Latin America meeting/Chile 2015EQ-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.Education and Outreach22900Completed20152015
20170650Comparison of the performance of an integrated Interviewer Administered EQ-5D-5L version with the Face to Face and Telephone Interviewer administered versionsAim: 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 RenkersDescriptive Systems14956Completed20172018
2016570Anchoring discrete choice experiment values at 0=death for the EQ-5D-YAbstractObjectives: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.Valuation111090Completed
20180510Valuing the EQ-5D-Y-3L in Germany, Spain and SloveniaThere 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 countryValuation, Youth95840Completed2019
2014110Assessing the health of the general population in England: how do the EQ-5D 3L and 5L versions compare?not availableValuation8250Completed2014
20191120Population 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.Populations and Health Systems15000Completed2020
20170610Legitimacy, use (and mis‐use) of Minimally Important Differences (MIDs) with the EQ-­‐5D: A systematic reviewWe 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.Populations and Health Systems16882Completed20182019
2014010Valuing 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.Valuation89950Completed2014
2016100Valuation of EQ-5D-5L for the Malaysian populationObjectives‐ 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.Valuation60193Completed2015
20170220An EQ-5D-5L value set for the Vietnam populationData 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.Valuation35775Completed20172018
20190830travel scholarship for Xueyun ZengEducation and Outreach6190Completed2019
2015170Monitoring neurotrauma patient outcomes in Bandung, Indonesia: A feasibility studyIntroduction: 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.Populations and Health Systems54157Completed2015
20170250Cross-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 AfricaJuvenile 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.Youth4850Completed20172017
2015410Writing a manuscript titled 'valuation of health outcomes using the time trade-off technique: the EuroQol protocols' for publication in the journal of PharmacoeconomicsThe 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.Valuation13912Completed2015
2013150Non-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 datasetsSince 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