Adapting the ICECAP-O for people living with dementia
Research type
Research Study
Full title
Adapting the ICECAP-O capability-wellbeing questionnaire for people living with dementia and carers. A cognitive interview study.
IRAS ID
345715
Contact name
Katie Breheny
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 6 months, 31 days
Research summary
The ICECAP-O questionnaire measures capability-wellbeing in older adults. It was designed to be used in economic evaluations of health and social care initiatives, providing evidence of ‘value for money’. The measures were designed to be self-completed, but ‘proxies’ (e.g. a family member or paid carer) can complete it on behalf on the individual if they are unable to complete the measure themselves. However, proxy completion introduces several issues, including choosing the ‘best’ proxy, and proxies routinely rating quality of life and wellbeing worse than the individual.
Ideally people living with dementia (PLWD) will complete the ICECAP-O themselves, if we are confident that the individual understands and completes the measure as the developers intended. This allows us to evaluate services from the users’ perspective and provides the best indication of their wellbeing. However, PLWD might find completing the ICECAP measures challenging. Potential issues include a cluttered layout, ambiguous questions, composite questions (asking two questions in one) and ‘wordy’ questions.
We have developed an adapted version of the ICECAP-O for PLWD and now need to explore whether it is an improvement on the original and whether people’s interpretation of the questions has changed. We have conducted a literature review, asked professionals and received feedback from patient and public involvement contributors to develop the adapted ICECAP-O. We will also test a second adaptation developed by another researcher. We will conduct about 38 qualitative interviews with PLWD (mild/moderate dementia) and carers (paid and informal) using methodology called cognitive interviewing. Each interview takes approximately 1 hour and involves a researcher asking probing questions such as why people answered as they did or how a question could be improved as they complete the questionnaire. We hope PLWD will be able to self-report their wellbeing for longer using an adapted ICECAP-O, instead of relying on proxies.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
24/WM/0194
Date of REC Opinion
1 Oct 2024
REC opinion
Favourable Opinion