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Over the period 1987–1991 an inter-disciplinary five-country group developed the EuroQol instrument, a five-dimensional three-level generic measure subsequently termed the ‘EQ-5D’. It was designed to measure and value health status. The salient features of its development and its consolidation and expansion are discussed. Initial expansion came, in particular, in the form of new language versions. Their development raised translation and semantic issues, experience with which helped feed into the design of two further instruments, the EQ-5D-5L and the youth version EQ-5D-Y. The expanded usage across clinical programmes, disease and condition areas, population surveys, patient-reported outcomes, and value sets is outlined. Valuation has been of continued relevance for the Group as this has allowed its instruments to be utilised as part of the economic appraisal of health programmes and their incorporation into health technology assessments. The future of the Group is considered in the context of: (1) its scientific strategy, (2) changes in the external environment affecting the demand for EQ-5D, and (3) a variety of issues it is facing in the context of the design of the instrument, its use in health technology assessment, and potential new uses for EQ-5D outside of clinical trials and technology appraisal.

Issue Title: The development of new research methods for the valuation of EQ-5D-5L

Objectives Discrete choice experiments (DCEs) can be used to obtain latent scale values for the EQ-5D-Y, but these require anchoring at 0=dead to meet the conventions of quality-adjusted life year (QALY) estimation. The primary aim of this study is to compare four preference elicitation methods for obtaining anchors for latent scale EQ-5D-Y values. Methods Four methods were tested: visual analogue scale (VAS), DCE (with a duration attribute), lag-time time trade-off (TTO) and the location-of-dead (LOD) approach. In computer-assisted personal interviews, UK general public respondents valued EQ-5D-3L health states from an adult perspective and EQ-5D-Y health states from a 10-year-old child perspective. Respondents completed valuation tasks using all four methods, under both perspectives. Results 349 interviews were conducted. Overall, respondents gave lower values under the adult perspective compared to the child perspective, with some variation across methods. The mean TTO value for the worst health state (33333) was about equal to dead in the child perspective and worse than dead in the adult perspective. The mean VAS rescaled value for 33333 was also higher in the child perspective. The DCE produced positive child perspective values and negative adult perspective values, though the models were not consistent. The LOD median rescaled value for 33333 was negative under both perspectives and higher in the child perspective. Discussion There was broad agreement across methods. Potential criteria for selecting a preferred anchoring method are presented. We conclude by discussing the decision-making circumstances under which utilities and QALY estimates for children and adults need to be commensurate to achieve allocative efficiency.

Objectives The study aims to increase knowledge about the performance of the EuroQol-visual analogue scales (EQ-VAS) in the UK NHS patient-reported outcome measures (PROMs) programme, which covers groin hernia, hip and knee replacement and varicose vein surgery, and make suggestions for improved collection, coding and analysis of data. Methods Four hundred scanned images of matched before-and-after EQ-VAS PROMs responses were selected at random. These were classified according to the different ways in which they were completed. Patient-level PROMs programme data linked to Hospital Episode Statistics for all patients from April 2009 to February 2011 were used to analyse the relationship between the EQ-VAS and the EQ-5D profile, index-weighted profile and condition-specific instruments. The linked PROMs and HES data comprise 331,951 anonymised patient records. Results A large majority (95 %) of EQ-VAS responses were completed in an unambiguous way, but only a minority (45 %) conformed strictly to the instructions given, posing challenges for data coding. The EQ-VAS data have a predictable and consistent relationship with the EQ-5D profile, although the correlations between the EQ-VAS and other measures of patient-reported health, both before and after surgery and in the change between them, are weak. Conclusions EQ-VAS data might be improved by providing better guidance on collection and coding. It is argued that the observed differences in results from EQ-VAS and other measures of health reflect the fact that it measures a broader underlying construct of health, arguably providing a means of summarising overall health that is closer to the patient's perspective.

Purpose To investigate the systematic differences in the self-reporting and valuation of overall health and, in particular, pain/discomfort between three countries (England/ UK, Japan, and Spain) on the EQ-5D. Methods Existing datasets were used to explore differences in responses on the EQ-5D descriptive system between Japan (3L and 5L), the UK (3L), England (5L), and Spain (5L), particularly on the dimension of pain/discomfort. The role of different EQ dimensions in determining self-reported overall health scores for the EuroQol visual analog scale (EQ-VAS) was investigated using ordinary least squares regression. Time trade-off (TTO) results from Japanese and UK respondents for the EQ-5D-3L as well as Japanese and English respondents for the EQ-5D-5L were compared using t tests. Results For the EQ-5D-3L, a higher percentage of respondents in Japan than in the UK reported 'no pain/discomfort' (81.6 vs 67.0%, respectively); for the EQ-5D-5L, the proportions were 79.2% in Spain, 73.2% in Japan, and 63-64% in England, after adjusting for age differences in samples. The 'pain/discomfort' dimension had the largest impact on respondents' self-reported EQ-VAS only for EQ-5D-3L in Japan. Using the EQ-5D-3L, Japanese respondents were considerably less willing to trade off time to avoid pain/discomfort than the UK respondents; for example, moving from health state, 11121 (some problems with pain/discomfort) to 11131 (extreme pain/discomfort) represented a decrement of 0.65 on the observed TTO value in the UK compared with 0.15 in Japan. Using the EQ-5D-5L, Japanese respondents were also less willing to trade off time to avoid pain/discomfort than respondents in England; however, the difference in values was much smaller than that observed using EQ-5D-3L data. Conclusions This study provides evidence of between-country differences in the self-reporting and valuation of health, including pain/discomfort, when using EQ-5D in general population samples. The results suggest a need for caution when comparing or aggregating EQ-5D self-reported data in multi-country studies.

How do we measure quality of life and utility of interventions? In this episode of the Value Insider podcast, host Mike Chambers speaks with Prof. Nancy Devlin about incorporating quality of life in value assessment. Prof. Devlin is professor of health economics at the University of Melbourne. Her past roles include Director of Research at the Office of Health Economics (OHE) London, Professor of Health Economics at City University of London, and she has been director of the International Society of Pharmacoeconomics and Outcomes Research (ISPOR). She is the Chair of the Board of the EuroQol Research Foundation, the international research organization which has developed and maintains the EQ-5D patient-reported outcome (PRO) instrument. Prof Devlin explains the value of the patient voice and how it can be measured and taken into account when considering the value of healthcare interventions. Keywords: market access, healthcare reimbursement, health technology assessment, HTA, value demonstration, health economics and outcomes research, payer

Background  The EuroQol Health and Wellbeing Short Version (EQ-HWB-S) instrument has been developed to measure the health and wellbeing of care-recipients and their caregivers for use in economic evaluation.The EQ-HWB-S has nine items, and pilot UK preference weights have now been developed. Objective We aimed to investigate the validity of the instrument in parents of children with and without health conditions. Methods EQ-HWB-S data were sourced from an Australian paediatric multi-instrument comparison study. We analysed the baseline characteristics and response distribution of the EQ-HWB-S items. Assessment of known-group validity was conducted for EQ-HWB-S items, level sum-scores and preference-weighted scores, including partial effects. Known-group analyses included three child health variables and where caregivers reported coronavirus disease 2019 (COVID-19) had impacted their wellbeing. We included analyses across gender, controlled for child and parent demographic variables, and compared scores across child health conditions. Results  Item responses were distributed as expected, with higher skew for mobility and activities. Parents experienced high levels of exhaustion. We detected significant differences between groups for level sum-scores and preference-weighted scores, as hypothesised; all tests were significant ( p  < 0.001), with moderate effect sizes (effect sizes were slightly higher for female than male parents). The regression analysis identified significantly different EQ-HWB-S scores for child health samples compared with the general population after controlling for demographic variables. Differences were observed between child health conditions. Conclusion The EQ-HWB-S is a useful instrument to measure parent quality of life for economic evaluation in this population. Data were limited to one time point; further research should investigate the instrument’s sensitivity to change and test–retest reliability in this population.

Value sets for the EQ-5D-Y-3L published to date appear to have distinctive characteristics compared with value sets for corresponding adult instruments: in many cases, the value for the worst health state is higher and there are fewer values < 0. The aim of this paper is to consider how and why values for child and adult health differ; and what the implications of that are for the use of EQ-5D-Y-3L values in economic evaluations to inform healthcare resource allocation decisions. We posit four potential explanations for the differences in values: (a) The wording of severity labels may mean the worst problems on the EQ-5D-Y-3L are descriptively less severe than those on the EQ-5D-5L; (b) Adults may genuinely consider that children are less badly affected than adults by descriptively similar health issues. That is, for any given health problem, adult respondents in valuation studies consider children’s overall health-related quality of life (HRQoL) on average to be higher than that for adults; (c) Values are being sought by eliciting adults’ stated preferences for HRQoL in another person, rather than in themselves (regardless of whether the ‘other person’ concerned is a child); and (d) The need to elicit preferences for child HRQoL that are anchored at dead = 0 invokes special considerations regarding children’s survival. Existing evidence does not rule out the possibility that (c) and (d) exert an upward bias in values. We consider the implications of that for the interpretation and use of values for pediatric HRQoL. Alternative methods for valuing children’s HRQoL in a manner that is not ‘age specific’ are possible and may help to avoid issues of non-comparability. Use of these methods would place the onus on health technology assessment bodies to reflect any special considerations regarding child quality-adjusted life-year gains.

Purpose The recently developed EQ Health and Wellbeing Instrument (EQ-HWB) is a broad, generic measure of quality-of-life designed to be suitable for caregivers. The aim of this study was to investigate performance and validity of the 9-item version (EQ-HWB-S) for caregivers where families had experienced adverse-life-events. Methods Using survey data from caregivers of children aged 0–8 years attending a community-health centre in 2021–2022, the general performance, feasibility, convergent and known-group validity, responsiveness-to-change, and test–retest reliability of the EQ-HWB-S was assessed. Twelve semi-structured interviews were conducted with survey respondents to assess acceptability and content validity. Results The sample included  234 caregivers at baseline (81% female, mean age 36-years, 38% Australian-born) and 190 at 6-months follow-up. Most EQ-HWB-S item responses were evenly spread, except for ‘Mobility’. The instrument showed good convergent validity with psychological distress (Kessler 6 (K6)) and personal-wellbeing (PWI-A) scales. EQ-HWB-S level sum-scores and preference-weighted scores were significantly different in all known-group analyses, in expected directions, and the instrument was responsive to change. For test–retest reliability, Intraclass Correlation Coefficients were excellent and individual item Kappa scores were moderate. The instrument was well received by interviewees who found the questions clear and relevant. The items were appropriate for parents experiencing adversity and carers of children with additional needs. Conclusion The EQ-HWB-S appeared valid, responsive to change, feasible, and well accepted by caregivers. By demonstrating the validity of the EQ-HWB-S in this hard-to-reach population of caregivers in families experiencing adverse events, this study adds to existing international evidence supporting its use.

Background Sugammadex reduces residual neuromuscular blockade after anaesthesia, potentially preventing postoperative pulmonary complications. However, definitive evidence is lacking. We therefore conducted a feasibility and pilot trial for a large randomised controlled trial of sugammadex, neostigmine, and postoperative pulmonary complications. Methods Patients aged ≥40 years having elective or expedited abdominal or intrathoracic surgery were recruited in Australia and Hong Kong. Perioperative care was at the discretion of clinicians, except for the use of rocuronium and/or vecuronium for neuromuscular blockade and the randomised intervention (sugammadex or neostigmine) for reversal. Feasibility measurements included recruitment, crossover, acceptability, completeness, and workload. Trial coordinator feedback was systematically sought. Patient-reported quality of life was measured using the EQ-5D-5L score. The primary pilot outcome was the incidence of new pulmonary complications up to hospital discharge (or postoperative day 7 if still in hospital). Results Among 150 eligible patients, 120 consented to participate (recruitment rate 80%, 95% confidence interval [CI] 73 to 86%). The randomised intervention was administered without crossover to 115 of 117 patients who received reversal (98%, 95% CI 94 to 100%). The protocol was acceptable or highly acceptable to the anaesthetist in 108 of 116 cases (93%, 95% CI 87 to 97%; missing = 4). Four patients of the 120 patients were lost to follow-up at 3 months (3.3%, 95% CI 0.9 to 8.3%). Case report forms were complete at 3 months for all remaining patients. The median time to complete trial processes was 3.5 h (range 2.5–4.5 h). Trial coordinators reported no barriers to trial processes. Patients were aged 64 (standard deviation 11) years, 70 (58%) were male and 50 (42%) were female, and planned surgeries were thoracic (23 [19%]), upper abdominal (41 [34%]), and lower abdominal (56 [47%]). The primary outcome was observed in 5 (8.5%) of the 59 sugammadex patients and 5 (8.2%) of the 61 neostigmine patients (odds ratio 1.02, 95% CI 0.28 to 3.67). Conclusions A large international randomised controlled trial of sugammadex, neostigmine and postoperative pulmonary complications in adult patients having abdominal and intrathoracic surgery, including collection of cost-effectiveness evidence for Health Technology Appraisal, is feasible. Trial registration Prospectively registered at the Australian and New Zealand Clinical Trials Registry ( ACTRN12620001313921 ) on December 7, 2020. www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380645&isReview=true .