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 (), Carol Brayne () and Penny Wright ()
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Jan R. Oyebode: University of Bradford
Simon Pini: University of Leeds
Emma Ingleson: University of Leeds
Molly Megson: University of Leeds
Mike Horton: University of Leeds
Linda Clare: University of Exeter
Hareth Al-Janabi: University of Birmingham
Carol Brayne: University of Cambridge
Penny Wright: University of Leeds

The Patient: Patient-Centered Outcomes Research, 2019, vol. 12, issue 1, No 8, 125-136

Abstract: Abstract Background and Objectives 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 two 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.

Date: 2019
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DOI: 10.1007/s40271-018-0334-4

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