ArticleHealth and quality of life outcomes2020
A qualitative exploration of the content and face validity of preference-based measures within the context of dementia.
Article in Health and quality of life outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
24 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Preference-based measures in people with dementia: a systematic review of psychometric properties.Health and quality of life outcomes · 2026Pooled it
- Understanding the influence of different proxy perspectives in explaining the difference between self-rated and proxy-rated quality of life in people living with dementia: a systematic literature review and meta-analysis.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Pooled it
- Assessing the psychometric performance of EQ-5D-5L in dementia: a systematic review.Health and quality of life outcomes · 2022Pooled it
- A multidomain decision support tool to prevent falls in older people: the FinCH cluster RCT.Health technology assessment (Winchester, England) · 2022Trial
- A Review of the Application of Generic Preference-Based Instruments with Older People Across Care Settings.Applied health economics and health policy · 2026Review
- Content validity, face validity and comprehensiveness of generic quality-of-life measures in adults and children with rare genetic conditions and their carers: a think aloud qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Validation of the ICECAP-O for assessing wellbeing in people with mild dementia in Denmark.Health and quality of life outcomes · 2026Article
- Self-reporting quality of life in mild-to-moderate Alzheimer's disease and Lewy body dementia: Comparing capability and health-focused measures using response process validation.Social science & medicine (1982) · 2026Article
- Treatment priorities from the perspectives of people with dementia with Lewy bodies: a reflexive thematic analysis.Frontiers in dementia · 2026Article
- Uses of the ICECAP measure of capability in adults with neurological health conditions: a scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- How Are Pedagogical Practices Within Medical Education Being Adapted for Autistic Students?Cureus · 2025Review
- Use of the adult social care outcomes toolkit (ASCOT) in research studies: an international scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Engaging Underserved Populations in Health Preference Research: Challenges and Strategies.The patient · 2025Article
- Self-reported quality of life in progressive cognitive decline-let's not throw the baby out with the bathwater.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Translation, cultural adaptation, and content validation of the Hong Kong Chinese version of Self-completion Adult Social Care Outcomes Toolkit (ASCOT-SCT4) for care service users.Health and quality of life outcomes · 2025Article
- How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6-12-year-olds.Health and quality of life outcomes · 2024Article
- Appropriateness of the EQ-HWB for Use in Residential Aged Care: A Proxy Perspective.The patient · 2024Article
- Article
- Content validity of the EQ-HWB and EQ-HWB-S in a sample of Italian patients, informal caregivers and members of the general public.Journal of patient-reported outcomes · 2024Article
- Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundAssessing the cost-effectiveness of interventions for people with dementia, based on cost per quality-adjusted life years (QALYs) gained, requires that the measures used to derive QALYs are preference-based whilst also being valid, feasible to use, comprehensible and acceptable for people with dementia. The aim of this study was to assess the content and face validity of six preference-based measures (PBMs) within the context of dementia.
methodsQualitative focus groups and interviews were conducted with community-dwelling individuals with mild dementia and carers of people with dementia. After exploring participants' understanding of 'quality of life' (QoL), six PBMs were assessed for content and face validity: two measures assessing health-related QoL (EQ-5D-5L and AQoL-8D); two covering broader aspects of capability wellbeing and social care-related QoL (ICECAP-O and ASCOT); and two dementia-specific QoL measures (DEMQOL-U and AD-5D). A random mix of one health-related QoL measure, one wellbeing measure, and one dementia-specific measure was explored in each session. All sessions were audiotaped and transcribed verbatim. Data were analysed thematically.
resultsNine individuals with mild dementia and 17 carers of people with dementia participated across 4 focus groups and 10 interviews. Participants perceived 9 broad QoL domains as relevant to them: Activity, Autonomy, Cognition, Communication, Coping, Emotions, End-of-Life, Physical Functioning, and Relationships. These domains had limited overlap with the content of the six PBMs. Assessment of face validity was summarized into eight themes: (1) ambiguous questions, (2) double -barrelled questions, (3) difficult/abstract questions, (4) judgemental/confronting questions, (5) lack of relevance and comprehensiveness, (6) response options, (7) layout/format and (8) proxy-response. There was no clear preference for one of the six measures explored; participants identified advantages and disadvantages across all measures. Although particularly designed for individuals with dementia, dementia-specific QoL measures were not always favoured over non-specific measures.
conclusionGiven the shortcomings of PBMs identified in this study, further empirical comparative analyses are necessary to guide the selection of PBMs for future dementia research.
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