ArticleHealth and quality of life outcomes2023
Feasibility, validity and reliability of the ASCOT-Proxy and ASCOT-Carer among unpaid carers of people living with dementia in England.
Article in Health and quality of life outcomes, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Preference-based measures in people with dementia: a systematic review of psychometric properties.Health and quality of life outcomes · 2026Pooled it
- Carers' interpretation of the recall period and perspective-taking when completing the EQ health and wellbeing instrument (EQ-HWB)-9 as proxies for people with dementia: a think-aloud study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- The adult social care outcomes toolkit easy read for older people (ASCOT-ER OP): an exploratory factor analysis and Rasch validation study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Validity and reliability of the Norwegian Adult Social Care Outcomes Toolkit (ASCOT CH4 and INT4) in three long-term care settings.Journal of patient-reported outcomes · 2026Article
- Assessing quality of life-a scoping review of studies presenting quality of life instruments for informal caregivers of persons with dementia.BMC geriatrics · 2025Article
- Effect of caregiver burden on the quality of life of informal caregivers of people with cystic fibrosis in the United Kingdom: a cross-sectional study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Use of the adult social care outcomes toolkit (ASCOT) in research studies: an international scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Construct validity of measures of care home resident quality of life: cross-sectional analysis using data from a pilot minimum data set in England.Health and quality of life outcomes · 2025Article
- Article
- Exploratory factor analysis and Rasch analysis to assess the structural validity of the Adult Social Care Outcomes Toolkit Proxy version (ASCOT-Proxy) completed by care home staff.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
backgroundPeople with dementia living at home represent a growing group of social care services users in England. Many are unable to complete questionnaires due to cognitive impairment. The ASCOT-Proxy is an adapted version of an established measure, ASCOT, which was developed as a way of collecting social care-related quality of life (SCRQoL) data from this group of service users, either alone or alongside the ASCOT-Carer, a measure of SCRQoL for unpaid carers. The ASCOT-Proxy includes two perspectives, the proxy-proxy perspective ('My opinion: What I think') and proxy-person perspective ('What I think the person I represent thinks'). We aimed to establish the feasibility, construct validity and reliability of the ASCOT-Proxy and ASCOT-Carer, with unpaid carers of people with dementia living at home unable to self-report. We also aimed to establish structural characteristics of the ASCOT-Proxy.
methodsCross-sectional data were collected using self-administered questionnaire (paper or online) among unpaid carers living in England between January 2020 and April 2021. Unpaid carers could take part if they supported someone living with dementia who was unable to self-complete a structured questionnaire. The person living with dementia or their unpaid carer had to use at least one social care service. We used the proportion of missing data to establish feasibility, ordinal exploratory factor analysis to establish structural characteristics, Zumbo's ordinal alpha for internal reliability, and hypothesis testing for construct validity. We also conducted Rasch analysis.
resultsWe analysed data for 313 carers (62.4(± 12.0) years, 75.7% (N=237) females). We were able to calculate the ASCOT-Proxy-proxy overall score for 90.7% of our sample, the ASCOT-Proxy-person overall score for 88.8% of our sample and in case of the ASCOT-Carer for 99.7% of our sample. As there was an issue with structural characteristics of the ASCOT-Proxy-proxy we conducted Rasch, reliability and construct validity analysis for the ASCOT-Proxy-person and ASCOT-Carer only.
conclusionsThis was a first study to explore psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer with unpaid carers of people with dementia living at home unable to self-report. There are some aspects of the psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer that warrant further investigation in future. Trial registration NA.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.