Development of an item pool for a needs-based measure of quality of life of carers of a family member with dementia

Jan R Oyebode, Simon Pini, Emma Ingleson, Molly Megson, Mike Horton, Linda Clare, Hareth Al-Janabi, C Brayne, P Wright

Research output: Contribution to journalArticlepeer-review

4 Citations (Scopus)
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Purpose: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.

Methods: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers, a content and face validity check, assessment of psychometric potential, testing of response formats, pre-testing through cognitive interviews with 22 carers, administration rehearsal with 2 carers, and final review.

Results: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.

Conclusions: The resulting dementia-carer specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid acceptable set of items.

Key Points for Decision Makers:
•Dementia, and interventions for dementia, affect not only the patient but also family carers and therefore clinical decision-making needs to be informed by impacts on carers’ quality of life as well as that of patients.
•The needs-based approach, used in this study, is a valuable person-centred approach on which to base measures of quality of life. The approach suggests that a person’s quality of life is affected by a condition insofar as that condition affects the person’s ability to fulfil his or her needs.
•Between establishing needs and developing a carer-reported measure of quality of life come several steps that must be rigorously followed if a valid and useful measure is to be developed. This paper describes these steps.
Original languageEnglish
Early online date12 Oct 2018
Publication statusE-pub ahead of print - 12 Oct 2018


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