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Developing a proxy version of the Adult Social Care Outcome Toolkit (ASCOT)

Rand, Stacey, Caiels, James, Collins, Grace, Forder, Julien E. (2017) Developing a proxy version of the Adult Social Care Outcome Toolkit (ASCOT). Health and Quality of Life Outcomes, 15 (1). Article Number 108. ISSN 1477-7525. (doi:10.1186/s12955-017-0682-0) (KAR id:61689)

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Background: Social care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments.

A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes.

Methods: To evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to ‘think aloud’ while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent’s comprehension of the format, layout and content of each item and also how they weighed up the options to formulate a response.

Results: A total of 25 unpaid carers and care workers participated in three iterative rounds of cognitive interviews. The findings indicate that the items were well-understood and the concepts were consistent with the item definitions for the standard self-completion version of ASCOT with minor modifications to the draft ASCOT-Proxy. The ASCOT-Proxy allows respondents to rate the proxy-proxy and proxy-patient perspectives, which improved the acceptability of proxy report.

Conclusions: A new proxy-report version of ASCOT was developed with evidence of its qualitative content validity and acceptability. The ASCOT-Proxy is ready for empirical testing of its suitability for data collection as a self-completion and/or interview questionnaire, and also evaluation of its psychometric properties.

Item Type: Article
DOI/Identification number: 10.1186/s12955-017-0682-0
Uncontrolled keywords: Quality of life; social care; outcomes; ASCOT; proxy
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Personal Social Services Research Unit
Depositing User: Stacey Rand
Date Deposited: 11 May 2017 09:07 UTC
Last Modified: 04 Mar 2024 17:12 UTC
Resource URI: (The current URI for this page, for reference purposes)

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