Developing a proxy version of the Adult social care outcome toolkit (ASCOT)

Abstract

BackgroundSocial 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.MethodsTo 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.ResultsA 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.ConclusionsA 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.

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT)

“…As to the latter, this might include specific commitments that individuals’ responses would be anonymised and not linked specifically to service eligibility/assessment for individuals. We outline how we subsequently embedded these features into a proxy version of the ASCOT measure in a separate paper [51].…”

“…Two researchers (TC, JC) familiarised themselves with the transcripts, audio recordings and interview notes in order to identify key ideas and recurrent themes. Some themes were pre-defined, having been identified in the literature as potentially key issues for proxy respondents: for example, the different perspectives that proxies may adopt to answer proxy-report questions, and the acceptability of being a proxy [46, 50]. Other themes emerged through the data.…”

Capability instruments in economic evaluations of health-related interventions: a comparative review of the literature

“…Malley et al [70] and Towers et al [67] demonstrated the feasibility of using ASCOT among older people and care home residents; however, the study also highlighted the need for proxy respondents in some situations. This later led to the development of a proxy version of the ASCOT, which demonstrated good feasibility [58]. Davis et al [30] reported that the level of agreement between patient and proxy for the EQ-5D-3L was significantly better than the level of agreement observed for the ICECAP-O in case of patients with vascular cognitive impairment.…”

Messung von Lebensqualität im Kontext stationärer Pflege

“…Das Instrument liegt in verschie denen Versionen (zum individuellen Ausfüllen, als Beobachtungsversion) sowie in einfacher Sprache vor (Turnpenny et al 2015). Auch eine Proxy-Ver sion wurde kürzlich entwickelt, mit der andere Personen im Namen der Nutzer und Nutzerinnen sozialer Dienstleistungen antworten können (Rand et al 2017 (Forder et al 2016).…”