OBJECTIVES:The EQ Health and Well-being (EQ-HWB-9) is a preference-weighted instrument with an interim value set for assessing health and well-being in patients, social care users, and carers. This study evaluated the experimental (2022) version's psychometric properties and compared it with established measures in a UK general population sample. METHODS:Data were drawn from a large cross-sectional survey of the UK general population (n = 11 383). Ceiling/floor effects were assessed at item (>50% extreme responses) and instrument (>15% at min/max score) levels. Convergent validity was assessed using Spearman correlations between EQ-HWB-9 items and conceptually similar items from the Short Warwick-Edinburgh Mental Well-being Scale, ICEpop CAPability measure for Adults, Health Utilities Index Mark 3 (HUI3), Office for National Statistics 4 Personal Well-being Questions, and Systems-science In Public Health and Health Economics Research. Pearson correlations were used for utility scores. Known-group validity was assessed using effect sizes (ES) to examine differences by mental well-being, disability, life satisfaction, caregiving status, self-reported health, and age. Agreement with comparator instruments was assessed using Bland-Altman plots and Lin's concordance correlation coefficient. RESULTS:Potential ceiling effects were noted for EQ-HWB-9 mobility and activity items, but not at the instrument level. Strong correlations (rs≥0.5, p<.001) with measures hypothesized a priori to assess related constructs (Short Warwick-Edinburgh Mental Well-being Scale, ICEpop CAPability measure for Adults, HUI3, Office for National Statistics 4 Personal Well-being Questions, and Systems-science In Public Health and Health Economics Research) supported convergent validity. The EQ-HWB-9 effectively distinguished between relevant population subgroups (ES ≥0.8). Agreement with HUI3 utilities was higher (concordance correlation coefficients >0.75) than with other comparators. CONCLUSIONS:The EQ-HWB-9 shows strong psychometric performance and is supported for use in UK health and well-being assessments.

Objectives The EQ-HWB-S (EQ Health and Wellbeing Short version) is a new generic measure of health, social care and carer related quality of life, specifically developed to generate utility values. However, its nine dimensions pose a challenge for creating value sets using traditional elicitation techniques, such as time trade-off. A promising alternative method, called Online elicitation of Personal Utility Functions (OPUF) has recently been proposed. The aim of this study was to test the feasibility of using OPUF to create a value set for the EQ-HWB-S. Methods We adapted the OPUF tool for the EQ-HWB-S, and piloted it in convenience samples from the UK and Germany. We then conducted an explorative valuation study in both countries in March 2023. We recruited a total of 658 respondents, in four samples: UK (n = 328) and German (n = 110) general population, and German rheumatic disease (n = 110) and diabetes (n = 110) patients. Feasibility was assessed based on completion times, data quality, logical consistency, and respondents’ feedback. A demo version of the English OPUF survey is available at: https://valorem.health/eqen-demo Results Median completion times ranged from 11 to 16 minutes across samples. The OPUF approach yielded well-ordered value set coefficients in all four samples, with precision comparable to a larger EQ-VT study (n = 520). Pain, mobility, and daily activities were the three most important dimensions across all samples. The OPUF-derived UK value set differed from the EQ-VT pilot value set in relative dimension weights, intermediate level positions, and overall scaling. Conclusion The OPUF approach was feasible for creating value sets for the EQ-HWB-S in four relatively small samples, including two patient groups. While further validation is needed, OPUF may offer a viable alternative or supplement to traditional valuation techniques for eliciting health state preferences, particularly in settings with limited resources or when eliciting preferences from specific groups.

OBJECTIVES:The Vision Impairment in Low Luminance-Utility Index (VILL-UI) is a novel preference-weighted measure for use in patients with age-related macular degeneration (AMD). No evidence exists on its psychometric performance nor its performance in comparison with the generic preference-weighted measure, EQ-5D-5L, commonly used in economic evaluation. This study compares the psychometric performance of VILL-UI with EQ-5D-5L in patients with AMD. METHODS:Assessments of feasibility, convergent/divergent validity, and known-group validity of VILL-UI and EQ-5D-5L are undertaken using MACUSTAR data at baseline, 12, 24, and 36 months. Analyses are undertaken separately using UK and German preference weights for both measures. RESULTS:The sample with complete responses (n = 586) had mean age 71.9 years (standard deviation 6.9), 65.2% women, with predominantly intermediate AMD (87.2%). VILL-UI and EQ-5D-5L are feasible for completion, although VILL-UI has fewer usable responses due to its response options (baseline 89% vs 100%). EQ-5D-5L has high ceiling effects, with around one-third of participants reporting the best health state compared with under 8% for VILL-UI. Convergent validity between EQ-5D-5L and VILL-UI utilities and dimensions in which a relationship is expected is low, with divergent validity demonstrated where expected. VILL-UI detected statistically significant differences in known groups for visual acuity, visual function, and AMD stage across most time points, with little evidence of known-group validity for EQ-5D-5L. CONCLUSIONS:VILL-UI is appropriate for use in future AMD studies to inform economic evaluation. VILL-UI has superior performance to EQ-5D-5L for known-group validity and has fewer ceiling effects but has fewer usable responses.

Objectives: Hypoglycemia affects the health-related quality of life (HRQoL) of people living with diabetes (PwD), and existing preference-weighted measures do not capture all important aspects. The study aimed to generate a preference-weighted measure capturing the HRQoL Methods: Items for the health-state classification system were selected from the hypoglycemiaspecific Hypo-RESOLVE QoL measure using relevance in cognitive interviews, translatability, suitability for valuation, endorsement by patient advisors and experts, and psychometric performance in a large survey of PwD. Second, an online valuation survey using discrete choice experiment (DCE) with survival attribute was conducted with members of the UK public. DCE data were modeled using conditional logit analysis and results scaled to produce preference weights for the classification system on a scale in which 1 is equivalent to full health, 0 is equivalent to dead, and below 0 is worse than dead. Results: The health-state classification system consists of 8 items reflecting the factors of the HypoRESOLVE QoL (psychological, social, and physical aspects). The valuation survey was completed by 1000 members of the UK public, representative for age and sex. Good understanding of DCE tasks was demonstrated. The item "do what I want to do in my life" had the largest preference weight, and "find it hard to stop thinking about my glucose levels" had the smallest. Conclusions: This study generated Hypo-RESOLVE QoL-8D, a preference-weighted measure capturing the HRQoL impact of hypoglycemia in PwD, with UK general public preference weights. The measure can be generated from Hypo-RESOLVE QoL data.

PURPOSE:Online elicitation of Personal Utility Functions (OPUF) is an innovative approach to valuing health states. OPUF uses a combination of ranking, swing-weighting, levels-rating and anchoring dead tasks. Little is known about how participants interpret and engage with OPUF tasks. This study aimed to address this gap. METHOD:Cognitive debrief interviews, which included 'think-aloud' and probing questions, were undertaken in the UK to understand how members of the public engage with OPUF when used to value the EQ-HWB-S (EQ Health and Wellbeing Short version). Coding drew upon a Framework approach, with final codes including an assessment of how participants engaged with each of the five OPUF tasks based on whether (1) they completed as expected, (2) minor concerns were identified or (3) major concerns were identified. The presence of major concerns was judged to undermine the validity of responses. RESULTS:All 27 interviews were identified to have at least minor concern and 18 (67%) were identified as having major concerns. Major concerns were identified in four of the tasks: ranking (in 19% of interviews), swing-weighting (30%), levels-rating (56%), anchoring dead task (48%). Older participants were more likely to have major errors. CONCLUSION:Think-aloud and probing interviews with 27 participants completing the OPUF identified multiple concerns, to the extent that their data is unlikely to be a valid reflection of their preferences. The extent of concerns identified here suggests the need for interviewer led data collection within OPUF to ensure data quality.

This paper considers the development and evolution of the short-form 6 dimensions (SF-6D), a generic preference-weighted measure consisting of a health classification with accompanying value set that was developed from one of the widest used health related quality of life measures, the SF-36 health survey. This enabled health state utility values to be directly generated from SF-36 and SF-12 data for a range of purposes, including to produce quality adjusted life years for use in economic evaluation of healthcare interventions across a range of different conditions and treatments. This paper considers the rationale for the development of the measure, the development process, performance and how the SF-6D has evolved since its conception. This includes the development of an updated version, SF-6D version 2 (SF-6Dv2), which was generated to deal with some criticisms of the first version, and now includes a standalone version for inclusion in studies without relying on use of SF-36 or SF-12. Valuation methods have also evolved, from standard gamble in-person interviews to online discrete choice experiment surveys. International work related to the SF-6Dv1 and SF-6Dv2 is considered. We also consider recommendations for use, highlighting key psychometric evidence and reimbursement agency recommendations.

BACKGROUND AND OBJECTIVES:The assessment of health-related quality of life (HRQoL) in patients with amyotrophic lateral sclerosis (ALS) is heterogeneous and inconsistent. The objectives of this study were (1) to develop a comprehensive conceptual framework of HRQoL in ALS and (2) map the content of existing patient-reported outcome measures (PROMs) used in ALS to this novel framework. METHODS:Our model of HRQoL in ALS (Health-related Quality of life in Amyotrophic Lateral Sclerosis, QuALS) was developed from a systematic literature review and consultative input from key stakeholders (patients, carers, and health care professionals). Five electronic databases were searched in April 2022. Primary studies of any design that assessed HRQoL in ALS by using a multi-item PROM and/or qualitative methods were identified. Using an a priori framework, HRQoL themes were extracted and iteratively modified from the content of each PROM and qualitative study quotations identified in the literature. The conceptual framework was ratified by stakeholders with lived experience and clinical experts. The QuALS framework was used to map the content of identified PROMs and qualitative studies based on thematic coverage. RESULTS:QuALS covers 3 high-level domains of HRQoL (physical, psychological, and social functioning) and consists of 7 themes (Activities; Physical Health; Autonomy; Cognition; Feelings and Emotions; Self-identity; Relationships), characterized by 42 subthemes. Of 8,220 studies identified, 274 were included in the review that informed QuALS. In these studies, 111 PROMs were used to assess at least 1 aspect of HRQoL, and 11 studies used qualitative methods. Of the 3 high-level domains, physical functioning was the most commonly assessed, particularly within ALS-specific PROMs where almost one-quarter of PROMs exclusively assessed physical functioning. None of the PROMs or qualitative studies identified assessed all aspects of HRQoL in the QuALS framework. DISCUSSION:This study presents a new comprehensive conceptual framework of HRQoL in ALS (QuALS), informed by a robust systematic review of existing literature and stakeholder input, incorporating lived experience. QuALS provides a valuable resource for researchers and clinicians interested in taking a holistic approach to assessing and understanding the full impact of ALS on HRQoL and how this may be affected by treatments.

OBJECTIVES:This study assessed the psychometric performance and construct validity of the EQ Health and Wellbeing Short (EQ-HWB-S), using a validated measure, the EQ-5D-5L, as a comparator. METHODS:The experimental version of the EQ-HWB-S was compared with the EQ-5D-5L to assess the psychometric performance of the measures. Data were drawn from the valuation stages of the Extending the Quality-Adjusted Life-Year project (UK general population, n = 429) and the EQ-5D-5L UK valuation pilot study (UK general population, n = 248). Construct validity was assessed based on convergent validity, using Spearman correlations and Pearson correlations. Known-group validity was assessed by estimating effect sizes to assess the ability of the EQ-HWB-S and EQ-5D-5L to discriminate between known groups based on "healthy" status, presence of a long-term condition, health and life satisfaction, age, and employment status. The degree of agreement in utility values across instruments was also evaluated using Bland-Altman plots. RESULTS:Strong associations (rs ≥ 0.5, P < .001) were found between conceptually overlapping dimensions and the utility scores of the EQ-HWB-S and EQ-5D-5L. The instruments performed comparably in discriminating between known groups including healthy versus unhealthy groups (based on the visual analog scale ≥ 80), long-term condition (vs no long-term condition), and above versus below average health and life satisfaction and employed (vs unemployed and long-term sick). CONCLUSIONS:The EQ-HWB-S performs favorably with utility values successfully discriminating between groups in which differences are expected. Convergence between the EQ-HWB-S and EQ-5D-5L is evident, especially between conceptually overlapping dimensions.

BackgroundLysosomal storage diseases (LSDs) are a group of rare inherited metabolic disorders, consisting of over 70 diseases that are characterised by lysosomal dysfunction. Due to their varied and progressive symptoms, LSDs have a continual impact on patients' health-related quality of life (HRQoL). Several recently published studies have provided insight into the HRQoL of individuals with LSDs. However, it is challenging to meaningfully synthesise this evidence, since studies often focus upon a particular type of LSD and / or utilise different self-report questionnaires or patient-reported outcome measures (PROMs) to assess HRQoL.AimsThe aim of this study was to review the published literature in LSDs, to identify the PROMs which have been used to assess HRQoL and generate a conceptual map of HRQoL domains measured in individuals diagnosed with LSDs.MethodsThree electronic databases were searched in March 2022. Primary studies of any design which utilised multi-item PROMs to assess at least one aspect of HRQoL in individuals with LSDs since 2017 were identified. Data were extracted to assess both the characteristics of each study and of the PROMs utilised within each study. The extraction of HRQoL domains and synthesis were informed by an a priori framework, inductively modified to reflect data emerging from the identified literature. Selection and extraction was undertaken independently by two reviewers; discrepancies were ratified by a third reviewer.ResultsSixty nine studies were identified which were published 2017-2022, with a combined total of 52 PROMs (71 variants) used to assess HRQoL in individuals with LSDs. The final extracted HRQoL framework included 7 domains (Activities; Physical sensations; Autonomy; Cognition; Feelings and emotions; Self-identity; Relationships), characterised by 37 sub-domains.ConclusionsThis review highlights the breadth and variety of HRQoL domains assessed in individuals with LSDs, across three broad domains of physical, psychological and social functioning. The resultant framework and mapped PROMs will aid researchers and clinicians in the selection of PROMs to assess aspects of HRQoL in people living with LSDs, based on their conceptual coverage.

Background and ObjectivesThe assessment of health-related quality of life (HRQoL) in patients with amyotrophic lateral sclerosis (ALS) is heterogeneous and inconsistent. The objectives of this study were (1) to develop a comprehensive conceptual framework of HRQoL in ALS and (2) map the content of existing patient-reported outcome measures (PROMs) used in ALS to this novel framework.MethodsOur model of HRQoL in ALS (Health-related Quality of life in Amyotrophic Lateral Sclerosis, QuALS) was developed from a systematic literature review and consultative input from key stakeholders (patients, carers, and health care professionals). Five electronic databases were searched in April 2022. Primary studies of any design that assessed HRQoL in ALS by using a multi-item PROM and/or qualitative methods were identified. Using an a priori framework, HRQoL themes were extracted and iteratively modified from the content of each PROM and qualitative study quotations identified in the literature. The conceptual framework was ratified by stakeholders with lived experience and clinical experts. The QuALS framework was used to map the content of identified PROMs and qualitative studies based on thematic coverage.ResultsQuALS covers 3 high-level domains of HRQoL (physical, psychological, and social functioning) and consists of 7 themes (Activities; Physical Health; Autonomy; Cognition; Feelings and Emotions; Self-identity; Relationships), characterized by 42 subthemes. Of 8,220 studies identified, 274 were included in the review that informed QuALS. In these studies, 111 PROMs were used to assess at least 1 aspect of HRQoL, and 11 studies used qualitative methods. Of the 3 high-level domains, physical functioning was the most commonly assessed, particularly within ALS-specific PROMs where almost one-quarter of PROMs exclusively assessed physical functioning. None of the PROMs or qualitative studies identified assessed all aspects of HRQoL in the QuALS framework.DiscussionThis study presents a new comprehensive conceptual framework of HRQoL in ALS (QuALS), informed by a robust systematic review of existing literature and stakeholder input, incorporating lived experience. QuALS provides a valuable resource for researchers and clinicians interested in taking a holistic approach to assessing and understanding the full impact of ALS on HRQoL and how this may be affected by treatments.

Objectives: The EQ Health and Wellbeing Short (EQ-HWB-S) is a new generic measure that covers health and wellbeing developed for use in economic evaluation in health and social care. The aim was to test the feasibility of using composite time trade-off (cTTO) and a discrete choice experiment (DCE) based on an international protocol to derive utilities for the EQ-HWB-S and to generate a pilot value set.Methods: A representative UK general population was recruited. Online videoconference interviews were undertaken where cTTO and DCE tasks were administered using EuroQol Portable Valuation Technology. Quality control (QC) was used to assess interviewers' performance. Data were modeled using Tobit, probit, and hybrid models. Feasibility was assessed based on the distribution of data, participants, and reports of understanding from the interviewer, QC and modeling results.Results: cTTO and DCE data were available for 520 participants. Demographic characteristics were broadly representative of the UK general population. Interviewers met QC requirements. cTTO values ranged between-1 to 1 with increasing disutility associated with more severe states. Participants understood the tasks and the EQ-HWB-S states; and the interviewers reported high levels of understanding and engagement. The hybrid Tobit heteroscedastic model was selected for the pilot value set with values ranging from-0.384 to 1. Pain, mobility, daily activities, and sad/depressed had the largest disutilities, followed by loneliness, anxiety, exhaustion, control, and cognition in the selected model.Conclusions: EQ-HWB-S can be valued using cTTO and DCE. Further methodological work is recommended to develop a valuation protocol specific to the EQ-HWB-S.

The international protocol for valuing EQ-5D-5L focuses upon prescribed preference elicitation methods and design. However, there are no recommendations around sampling, recruitment, data analysis or modelling to generate the EQ-5D-5L value set. This review examines methods used to generate international EQ-5D-5L values sets, across sampling, recruitment, data analysis, modelling, assessing model performance and selection of the recommended value set. All published EQ-5D-5L value sets were identified by a systematic search and confirmed by the EuroQol Group. Data were extracted to assess sampling, recruitment, preference elicitation techniques and design, data analysis, modelling, assessing model performance, and vale set selection. These are summarised in tables. The review included 29 studies with 27 value sets generated using time-trade-off (TTO) data (n = 10) only or using a hybrid model that combines TTO and discrete choice experiment data (n = 17). TTO data were most commonly estimated using a heteroscedastic Tobit model with censoring at − 1, and the hybrid model using a specially created program. Model performance was generally assessed using goodness of fit, logical consistency and significance of coefficients, suitability of the model for the data characteristics and parsimony, though not all selected models account for the specific characteristics of the data. Different assessments of model performance and reasoning are provided for the selection of the recommended value set for a country. This raises the question of valid criteria for selecting a recommended value set and whether this should rely upon researchers’ recommendations when value sets are often used to inform public policy.

We use sequence analysis to compare the different trajectories that individuals take through the education system and into work and identify the characteristics that could be used to target those who are at most risk of poorer labour market outcomes. As well as age 16 exam performance, we find that parental advice, aspirations, and attitudes towards HE are important predictors of the pathways through education and into work. However, these pathways are not strongly determined at the end of compulsory education, and thus there are still opportunities for individuals to change their trajectory even after leaving school.

The underrepresentation of women in Science, Technology, Engineering and Maths (STEM) occupations is a world-wide phenomenon. The UK is simultaneously encountering a shortage of STEM skills. While gender imbalances in STEM study in higher education and A-level study are widely documented, gender imbalances are apparent in vocational post-16 education, though the existence and causes of these imbalances have received little attention. This paper uses administrative data to explore the extent of gender imbalances in STEM qualifications attempted and achieved in vocational post-16 education routes. Gender differentials in the uptake of vocational STEM qualifications are much starker than they are in A-levels and the roles of ability, socio-economic status and school characteristics in explaining gender differentials differ with the education route taken, though their power in explaining these gaps is limited.

The EQ Health and Wellbeing Short (EQ-HWB-S) is a new generic measure that covers aspects of health and wellbeing. It has been developed for use in cost utility analysis for interventions which may impact patients, social care users or informal carers. The 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. 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. 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. EQ-HWB-S can be valued using cTTO and DCE administered using EQ-VT. The results offer an opportunity to test the validity of the EQ-HWB-S utilities. Further methodological work is recommended to develop a valuation protocol specific to the EQ-HWB-S.

Background This paper describes the first evaluation of the construct validity and performance of the newly developed preference-based measure of health, the SF-6D version 2 (SF-6Dv2). Method Utilising data from the Multi-Instrument Comparison (MIC) project (n = 7932), we explored the descriptive differences in utility values between the SF-6Dv2 and the SF-6D and evaluated the known group validity of both measures by testing the statistical significance of differences in utility values and calculating the effect sizes across known groups. The convergent validity of the SF-6Dv2 was explored by examining whether the SF-6Dv2 is related to alternative validated measures, including the EQ-5D-5L and AQoL-8D. Results Differences between the utility values of the SF-6Dv2 and SF-6D were evident; utilities were generally lower for the SF-6Dv2, with larger standard deviations resulting in larger absolute differences between groups. The SF-6Dv2 performed well in terms of known-group validity and successfully distinguished disease severity and between the disease and healthy groups, outperforming the SF-6D in some but not all groups. Convergent validity analyses indicated strong associations between the SF-6Dv2 and the SF-6D, EQ-5D-5L and AQoL-8D utilities. Conclusions The psychometric performance of the SF-6Dv2 is favourable with respect to known group validity and convergent validity, but does not seem to have improved, compared with the SF-6D. However, the new method of valuation has had a substantial impact on the size of absolute differences in utility values, which could impact quality-adjusted life-year results. The economic evaluation of health interventions may therefore be influenced by the choice of the SF-6Dv2 over the SF-6D.