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Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia

Author

Listed:
  • 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)

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.

Suggested Citation

  • Jan R. Oyebode & Simon Pini & Emma Ingleson & Molly Megson & Mike Horton & Linda Clare & Hareth Al-Janabi & Carol Brayne & Penny Wright, 2019. "Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 12(1), pages 125-136, February.
    • Handle: RePEc:spr:patien:v:12:y:2019:i:1:d:10.1007_s40271-018-0334-4
    DOI: 10.1007/s40271-018-0334-4
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    References listed on IDEAS

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    1. Hunt, Sonja M. & McKenna, Stephen P., 1992. "The QLDS: A scale for the measurement of quality of life in depression," Health Policy, Elsevier, vol. 22(3), pages 307-319, October.
    2. Grewal, Ini & Lewis, Jane & Flynn, Terry & Brown, Jackie & Bond, John & Coast, Joanna, 2006. "Developing attributes for a generic quality of life measure for older people: Preferences or capabilities?," Social Science & Medicine, Elsevier, vol. 62(8), pages 1891-1901, April.
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