Repository logo

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

Accepted version



Change log


Pini, Simon 
Ingleson, Emma 
Megson, Molly 
Horton, Mike 


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.



Adult, Aged, Aged, 80 and over, Caregivers, Dementia, Family, Female, Humans, Interviews as Topic, Male, Middle Aged, Needs Assessment, Psychometrics, Qualitative Research, Quality of Life, United Kingdom

Journal Title


Conference Name

Journal ISSN


Volume Title



Springer Science and Business Media LLC
Medical Research Council (MR/M025179/1)
Jan Oyebode, Penny Wright, Simon Pini, Mike Horton, each declare that this work was supported by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR). Grant title: HQLC Dementia Carers Instrument Development: DECIDE (MR/M025179/1) and that the grant is registered on the UK Research and Innovation Gateway: . They also declare that they have received financial support for travel to meetings for the study, manuscript preparation or other purposes from the grant funder as part of the award only. In addition, Penny Wright has declared that she is the principal investigator and was the main applicant for the funding that was received from the MRC and NIHR, and Jan Oyebode has declared her position as a coinvestigator. The following authors have no conflicts of interest to declare: Emma Ingleson, Molly Megson, Linda Clare, Hareth Al-Janabi, Carol Brayne.