Jan R Oyebode1, Simon Pini2, Emma Ingleson2, Molly Megson2, Mike Horton3, Linda Clare4, Hareth Al-Janabi5, Carol Brayne6, Penny Wright2. 1. Centre for Applied Dementia Studies, Faculty of Health Studies, University of Bradford, Bradford, UK. j.oyebode@bradford.ac.uk. 2. Section of Patient Centred Outcome Research, Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, UK. 3. Psychometric Laboratory for Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UK. 4. The Centre for Research in Ageing and Cognitive Health, Medical School, University of Exeter, Exeter, UK. 5. Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK. 6. Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
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.
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.
Authors: L C Doward; A Spoorenberg; S A Cook; D Whalley; P S Helliwell; L J Kay; S P McKenna; A Tennant; D van der Heijde; M A Chamberlain Journal: Ann Rheum Dis Date: 2003-01 Impact factor: 19.103
Authors: Mike C Horton; Jan Oyebode; Linda Clare; Molly Megson; Leanne Shearsmith; Carol Brayne; Paul Kind; Zoe Hoare; Hareth Al Janabi; Val Hewison; Alan Tennant; Penny Wright Journal: Gerontologist Date: 2021-04-03