ASSESSING THE CONTENT VALIDITY OF THE PROXY VERSION OF THE EQ-HWB-9 IN DEMENTIA: A QUALITATIVE STUDY...
Author(s)
Sofoora K. Usman, MSc, BBA1, Kathleen Doherty, PhD2, Margo Bryan, Other3, Jill Carlton, PhD4, Tim Luckett, PhD5, Brendan Mulhern, PhD6, Carrie-Anne Ng, PhD6, Richard Norman, BA, MSc, PhD7, Jessica Roydhouse, PhD1.
1Menzies Institute for Medical Research, University of Tasmania, Hobart, Australia, 2Wicking Dementia Research and Education Centre, University of Tasmania, Hobart, Australia, 3Lived Experience Partner, Hobart, Australia, 4Sheffield Centre for Health and Related Research, University of Sheffield, Sheffield, United Kingdom, 5Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, Australia, 6Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, Australia, 7School of Population Health, Curtin University, Perth, Australia.
1Menzies Institute for Medical Research, University of Tasmania, Hobart, Australia, 2Wicking Dementia Research and Education Centre, University of Tasmania, Hobart, Australia, 3Lived Experience Partner, Hobart, Australia, 4Sheffield Centre for Health and Related Research, University of Sheffield, Sheffield, United Kingdom, 5Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, Australia, 6Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, Australia, 7School of Population Health, Curtin University, Perth, Australia.
OBJECTIVES: The EQ-HWB-9 is a generic health and wellbeing measure with a 7-day recall period. The EQ-HWB-9 asks proxies to report their observation of the person (proxy-proxy perspective). Whilst proxy reporting is common in clinical contexts, understanding of proxy perspective-taking in practice and use of the recall period is poorly understood. Objectives To examine 1) how carers of people living with dementia interpret the 7-day recall period, 2) carer perspective-taking, and 3) content validity for the EQ-HWB-9 (V2.0).
METHODS: A qualitative study was conducted with informal carers of people living with dementia in Australia. Carers were recruited among participants of an online course in dementia and participated in think-aloud cognitive interviews. Carers were asked to provide their thoughts on the recall period and the perspective they used when completing the EQ-HWB-9. A COSMIN-informed coding framework was applied, to assess content validity (i.e., comprehension, difficulty answering, relevance, and applicability).
RESULTS: Twenty-two carers completed interviews. For most participants, the 7-day period appeared suitable. However, some participants who did not see the person with dementia as often found longer periods more useful. Others had concerns about the interview occurring in an atypical period that would not reflect the person’s usual health or well-being. Most participants used a mix of proxy perspectives. Few items had concerns raised due to relevance or acceptability. Two participants suggested modifications to the response options to allow for uncertainty(e.g: NA or “I don’t know”). Carers felt less observable items were harder to report (e.g., pain and sadness).
CONCLUSIONS: The EQ-HWB-9 demonstrated good performance overall, and its 7-day recall period appeared appropriate for this population and context, but few carers adhered strictly to the proxy-proxy perspective. Instructions to improve perspective-taking adherence should be evaluated and considered. Although 7 days seems suitable, guidance on choosing proxies who visit the person frequently may be useful.
METHODS: A qualitative study was conducted with informal carers of people living with dementia in Australia. Carers were recruited among participants of an online course in dementia and participated in think-aloud cognitive interviews. Carers were asked to provide their thoughts on the recall period and the perspective they used when completing the EQ-HWB-9. A COSMIN-informed coding framework was applied, to assess content validity (i.e., comprehension, difficulty answering, relevance, and applicability).
RESULTS: Twenty-two carers completed interviews. For most participants, the 7-day period appeared suitable. However, some participants who did not see the person with dementia as often found longer periods more useful. Others had concerns about the interview occurring in an atypical period that would not reflect the person’s usual health or well-being. Most participants used a mix of proxy perspectives. Few items had concerns raised due to relevance or acceptability. Two participants suggested modifications to the response options to allow for uncertainty(e.g: NA or “I don’t know”). Carers felt less observable items were harder to report (e.g., pain and sadness).
CONCLUSIONS: The EQ-HWB-9 demonstrated good performance overall, and its 7-day recall period appeared appropriate for this population and context, but few carers adhered strictly to the proxy-proxy perspective. Instructions to improve perspective-taking adherence should be evaluated and considered. Although 7 days seems suitable, guidance on choosing proxies who visit the person frequently may be useful.
Conference/Value in Health Info
2026-09, ISPOR Asia Pacific 2026, Bangkok, Thailand
Value in Health, Volume 55, Issue S1
Code
PCR29
Topic
Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Geriatrics, SDC: Neurological Disorders