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Objectives To assess the feasibility of capturing older care home residents’ quality of life (QoL) in digital social care records and the construct validity (hypothesis testing) and internal consistency (Cronbach’s alpha) of four QoL measures.Design Cross-sectional data collected in wave 1 of the DACHA (Developing resources And minimum dataset for Care Homes’ Adoption) study, a mixed-methods pilot of a prototype minimum dataset (MDS).Setting Care homes (with or without nursing) registered to provide care for older adults (>65 years) and/or those living with dementia. All homes used a digital record system from one of two suppliers.Participants Data were extracted from 748 residents. All permanent residents, aged 65 years or older, were eligible to participate, including those lacking capacity to consent. Temporary residents and residents in their last weeks of life were excluded.Outcome measures and analysis The English language versions of Adult Social Care Outcomes Toolkit (ASCOT)-Proxy-Resident, ICEpop CAPability measure for Older people (ICECAP-O), EQ-5D-5L proxy and the QUALIDEM were added to the digital record. As there have not been any previous studies of the structural validity of the English language version of the QUALIDEM, ordinal exploratory factor analysis (EFA) was applied for this measure only. Feasibility (% missing by software provider and measure), % floor/ceiling effects (>15% at lower/upper end of the scales), convergent or divergent construct validity (criterion of >75% of hypotheses accepted) and internal consistency (Cronbach’s alpha ≥0.7) were assessed for all four measures.Results The ordinal EFA of QUALIDEM did not replicate the findings of previous research. A six-factor (36 item) solution was proposed and used in all subsequent analyses. There were low rates of missing data (

Context: The contribution of homecare services to supporting older adults with their food and drink-related needs and improving outcomes has been relatively underexplored. Objective: To identify the literature on the role of homecare in addressing older adults’ food and drink care-related needs and improving outcomes. Method: Scoping review. Systematic searches were conducted in four databases. Inclusion criteria were studies (any method) of food and drink-related needs and/or outcomes of older adults accessing homecare. Identified records were screened by title/abstract and, if eligible, full text against eligibility criteria. Selected records (n = 22) were charted. Full texts were analysed thematically. Findings: Three themes were identified: (1) conceptualisation of food and drink outcomes/needs; (2) the role of homecare in supporting older adults, including barriers and facilitators and (3) innovative service delivery models or interventions. The literature tended to focus on supporting nutrition and avoiding malnutrition. Some studies focussed on the role of person-centred homecare in improving older people’s quality of life, by considering the social, personal and cultural or religious aspects of food and drink. Barriers to the delivery of high-quality care by homecare workers included short visits, lack of training and poor communication with family and healthcare professionals. Innovative interventions or service delivery models did not always consider the actual or potential role of homecare. Limitations: Diverse definitions of homecare, internationally, were a challenge to identifying literature and drawing conclusions. Implications: Further research is needed on the role of homecare in supporting older adults with their food and drink needs, especially in designing and implementing innovative interventions and models of service delivery.

Context: The demand for long-term care services provided at home (home care) has increased over time. However, we do not know whether home care is cost-effective with respect to other care options. This restricts the ability of policymakers to allocate the limited resources for long-term care efficiently. Objectives: The purpose of this scoping review is to understand what is already known about the comparative cost-effectiveness of home care versus other care options, different modes of home care and different intensities of home care. Methods: We searched six electronic databases in January and February 2023. A total of 1,191 items were identified and reviewed. Fourteen papers were thematically analysed, and the findings were presented under four themes: definition of home care and comparators; measurement of outcomes and costs; treatment of informal care; and methods. Findings: The existing evaluations of home care lack a standardised framework for measuring outcomes, costs and the impact of informal care and suffer from methodological limitations. Evidence on the comparison between traditional home care options and other models of home-based care, such as directly employed personal assistants or extra care housing schemes, is currently missing. Limitations: The definition of home care can vary across countries and studies, which may affect our ability to capture relevant literature. Implications: Future work in the evaluation of home care will need to use new outcome measures, incorporate caregivers’ outcomes, and employ newer statistical methods. Relevant authorities also need to prioritise making routinely collected data linkable and accessible.

Background The Developing research resources And minimum data set for Care Homes’ Adoption and use or DACHA study aims to create a prototype minimum data set combining residents’ information recorded by care homes with their data held in health and social care data sets. The DACHA minimum data set will contain information on quality of life. Internationally and in the UK, there is no consensus on collecting information on quality of life in a standardised format equivalent to the consensus for health measures. Objective This paper describes an online consultation with stakeholder representatives about how to measure the quality of life of residents in UK older-adult care homes, for inclusion in the DACHA minimum data set. Design We drew on principles of the Delphi technique, identifying participants knowledgeable about living, working in and visiting care homes, and preference scoring. Setting We used a bespoke online research engagement platform (Thiscovery, www.thiscovery.org, Cambridge, UK) to engage the participants. Participants Participants included care home staff and managers, old age specialists (clinical/research), commissioners/providers/regulators, primary care professionals, relatives/family carers of care home residents. The consultation is complementary to DACHA’s research and patient and public involvement and engagement activities, which have involved people living in care homes; thus, care home residents were not included in this consultation. Results The first round asked 30 participants to rank the most important principles and domains to consider when measuring quality of life in care homes. Responses to round 1 informed the selection of quality of life measures that round 2 (September 2022) participants were asked to report their familiarity with and confidence in a range of outcome measures all of which met the criteria identified as important in round 1. Recruitment was extended in round 2, and 72 individuals participated. Conclusion Based on the rankings and the qualitative feedback in round 2, we included four of the shortlisted quality of life outcome measures in DACHA’s prototype minimum data set for care homes. The qualitative feedback suggested a shared understanding across the different representative groups about the strengths and limitations of the selected measures. This work makes an important contribution, understanding the opportunities that quality of life measures pose for different stakeholder groups as regular users of care home resident data. Future work In future DACHA work, interviews and focus groups will collect further data about the perceptions of care home staff who completed measures during the pilot study and about the usefulness of the data collected via these measures. The quality-of-life section of the DACHA minimum data set can contribute to informing similar care home data sets internationally. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234. Plain language summary The Developing research resources And minimum data set for Care Homes’ Adoption and use study aims to explore how we can link together and safely share information about older care home residents so that care settings (such as hospitals, GPs and care homes) can best meet their needs. To work towards this aim, we are identifying what information is most important to capture and share in a ‘minimum data set’. Having information about care home residents’ quality of life was recognised by residents, their family members, care providers, researchers and health professionals as something that is important to measure. Quality of life describes the general well-being of an individual and is more than whether someone is healthy or not. By measuring a person’s quality of life, it is possible to explore how changes in their care or innovations within their care home affect their sense of well-being. We asked care home staff, experts on ageing, healthcare workers, local authority officials and family members of residents what is important to know about residents’ quality of life. In the first online survey (June 2022), we learned from 30 individuals that any quality of life measurement tool needs to be simple, reliable and meeting the needs of the residents. In our second survey (September 2022), 72 individuals gave us their thoughts about different quality of life measurement tools. They told us about whether they would use these tools, how much confidence they have in them, and what they see as strengths and weaknesses of the tools. This feedback helped us choose the right tools to measure quality of life in care homes and make sure they are a good fit for care home residents.

Abstract Background People 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. Methods Cross-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. Results We 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. Conclusions This 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

Context: Social care outcomes (the effect of services on the quality of life of people with support needs and unpaid carers) have been proposed as a way of improving the quality and effectiveness of care. Outcomes have also been proposed as a way of reconceptualising ‘needs’ that have applications in needs assessment, care planning, evaluation and care practice. Objectives: The study aimed to provide insights into social care professionals’ experiences and views on the collection and application of outcomes data in practice and what they believe are the benefits, challenges and barriers to implementation. Methods: Interviews were conducted with 25 social care professionals in England and analysed using a framework approach. Findings: Participants reported perceived benefits of using outcomes data, especially to focus effort on improving the well-being of people with support needs and carers. Perceived challenges include requirements for data collection set by funders/commissioners, the volume of data collected, difficulties in separating non-service-related influences on outcomes and the format of collection. Participants felt a more flexible approach might facilitate more meaningful conversations, rather than a ‘tick-box’ exercise. Limitations: The study sample was purposive, based on established connections. It only included professionals from London and South East and Central England. Implications: Although outcomes are perceived as important in helping to improve people’s lives, social care professionals identified a number of challenges. Further research to understand and address these challenges is needed.

Background: Measurement models inform the approach to assess a measure’s validity and also how a measure is understood, applied and interpreted. With preference-based measures, it is generally accepted that they are formative; however, if they are applied without preferences, they may be reflective, formative or mixed. In this study, we sought to empirically test whether the reflective, formative or mixed measurement model best describes PBMs of social care-related quality of life (ASCOT, ASCOT-Carer). We also explored the network approach, as an alternative. Methods: ASCOT and ASCOT-Carer data were analyzed using confirmatory factor analysis and Multiple Indicators Multiple Causes models to test reflective, formative or mixed measurement models, respectively. Network analysis of partial correlations using the Gaussian graphical model was also conducted. Results: The results indicated that the reflective measurement model is the worst fit for ASCOT and ASCOT-Carer. The formative or mixed models may apply to ASCOT. The mixed model was the best fit for ASCOT-Carer. The network analysis indicated that the most important or influential items were Occupation and Personal cleanliness and comfort (ASCOT) and Time and space and Self-care (ASCOT-Carer). Conclusions: The ASCOT and ASCOT-Carer are best described as formative/mixed or mixed models, respectively. These findings may guide the approach to the validation of cross-culturally adapted and translated versions. Specifically, we recommend that EFA be applied to establish structural characteristics, especially if the measure will be applied as a PBM and as a measure of SCRQoL. Network analysis may also provide further useful insights into structural characteristics.

Introduction Health and care data are routinely collected about care home residents in England, yet there is no way to collate these data to inform benchmarking and improvement. The Developing research resources And minimum data set for Care Homes’ Adoption and use study has developed a prototype minimum data set (MDS) for piloting.Methods and analysis A mixed-methods longitudinal pilot study will be conducted in 60 care homes (approximately 960 residents) in 3 regions of England, using resident data from cloud-based digital care home records at two-time points. These will be linked to resident and care home level data held within routine National Health Service and social care data sets. Two rounds of focus groups with care home staff (n=8–10 per region) and additional interviews with external stakeholders (n=3 per region) will explore implementation and the perceived utility of the MDS. Data will be assessed for completeness and timeliness of completion. Descriptive statistics, including percentage floor and ceiling effects, will establish data quality. For validated scales, construct validity will be assessed by hypothesis testing and exploratory factor analysis will establish structural validity. Internal consistency will be established using Cronbach’s alpha. Longitudinal analysis of the pilot data will demonstrate the value of the MDS to each region. Qualitative data will be analysed inductively using thematic analysis to understand the complexities of implementing an MDS in care homes for older people.Ethics and dissemination The study has received ethical approval from the London Queen’s Square Research Ethics Committee (22/LO/0250). Informed consent is required for participation. Findings will be disseminated to: academics working on data use and integration in social care, care sector organisations, policy makers and commissioners. Findings will be published in peer-reviewed journals. Partner NIHR Applied Research Collaborations, the National Care Forum and the British Geriatrics Society will disseminate policy briefs.

Abstract Background There has been considerable interest in using the Adult Social Care Outcomes Toolkit (ASCOT), developed in England, to measure quality-of-life outcomes of long-term care (LTC-QoL) service provision in national and cross-national studies. Objectives The aim of this study was to translate and culturally adapt the original ASCOT service user measure into German and to evaluate its content and construct validity in Austrian home care service users. Methods The translation and cultural adaptation process followed the ISPOR TCA guidelines. We used qualitative data from six cognitive debriefing interviews with Austrian recipients of home care services to assess linguistic and content validity. In addition, cross-sectional survey data (n = 633) were used to evaluate construct validity by testing hypothesized associations established in a previous study for the original English ASCOT service user instrument. Results Cognitive debriefing interviews confirmed that the German adaptation of the ASCOT service user instrument was understood as intended, although two domains (‘Control over daily life’ and ‘Dignity’) and selected phrases of the response options were challenging to translate into German. All ASCOT domains were statistically significantly associated with related constructs and sensitive to service user sub-group differences. Conclusions We found good evidence for a valid cross-cultural adaptation of the German version of ASCOT for service users. The analysis also supports the construct validity of the translated instrument and its use in evaluations of QoL-effects of LTC service provision in German-speaking countries. Further research on the reliability and feasibility in different care settings is encouraged.

Background: Care home staff have a critical bearing on quality. The staff employed, the training they receive and how well they identify and manage residents’ needs are likely to influence outcomes. The Care Act 2014 (Great Britain. The Care Act 2014. London: The Stationery Office; 2014) requires services to improve ‘well-being’, but many residents cannot self-report and are at risk of exclusion from giving their views. The Adult Social Care Outcomes Toolkit enables social care-related quality of life to be measured using a mixed-methods approach. There is currently no equivalent way of measuring aspects of residents’ health-related quality of life. We developed new tools for measuring pain, anxiety and depression using a mixed-methods approach. We also explored the relationship between care home quality, residents’ outcomes, and the skill mix and employment conditions of the workforce who support them. Objectives: The objectives were to develop and test measures of pain, anxiety and depression for residents unable to self-report; to assess the extent to which regulator quality ratings reflect residents’ care-related quality of life; and to assess the relationship between aspects of the staffing of care homes and the quality of care homes. Design: This was a mixed-methods study. Setting: The setting was care homes for older adults in England. Participants: Care home residents participated. Results: Three measures of pain, anxiety and low mood were developed and tested, using a mixed-methods approach, with 182 care home residents in 20 care homes (nursing and residential). Psychometric testing found that the measures had good construct validity. The mixed-methods approach was both feasible and necessary with this population, as the majority of residents could not self-report. Using a combined data set (n = 475 residents in 54 homes) from this study and the Measuring Outcomes in Care Homes study (Towers AM, Palmer S, Smith N, Collins G, Allan S. A cross-sectional study exploring the relationship between regulator quality ratings and care home residents’ quality of life in England. Health Qual Life Outcomes 2019;17:22) we found a significant positive association between residents’ social care-related quality of life and regulator (i.e. Care Quality Commission) quality ratings. Multivariate regression revealed that homes rated ‘good/outstanding’ are associated with a 12% improvement in mean current social care-related quality of life among residents who have higher levels of dependency. Secondary data analysis of a large, national sample of care homes over time assessed the impact of staffing and employment conditions on Care Quality Commission quality ratings. Higher wages and a higher prevalence of training in both dementia and dignity-/person-centred care were positively associated with care quality, whereas high staff turnover and job vacancy rates had a significant negative association. A 10% increase in the average care worker wage increased the likelihood of a ‘good/outstanding’ rating by 7%. Limitations: No care homes rated as inadequate were recruited to the study. Conclusions: The most dependent residents gain the most from homes rated ‘good/outstanding’. However, measuring the needs and outcomes of these residents is challenging, as many cannot self-report. A mixed-methods approach can reduce methodological exclusion and an over-reliance on proxies. Improving working conditions and reducing staff turnover may be associated with better outcomes for residents. Future work: Further work is required to explore the relationship between pain, anxiety and low mood and other indicators of care homes quality and to examine the relationship between wages, training and social care outcomes. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 19. See the NIHR Journals Library website for further project information.

Abstract Background The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life ‘beyond health’ for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life. Methods An interview survey was conducted with 387 carers of adults who used long-term care (also known as social care) support in England. Construct validity by hypothesis testing was assessed using Pearson correlation coefficient. Exploratory factor analysis was also applied to investigate the dimensionality of the combined items from the ASCOT-Carer and CES (as measures of carer quality of life ‘beyond health’) and the EQ-5D (as a measure of health-related quality of life). Results In the construct validity analysis, hypothesised differences in correlations were observed with two exceptions. The exploratory factor analysis indicated that the ASCOT-Carer, CES and EQ-5D-3 L items loaded onto three separate factors. The first factor comprised the seven ASCOT-Carer items plus two CES items (activities outside caring, support from friends and family). The second factor comprised three of the six CES items (fulfilment from caring, control over caring and getting on with the person you care for). The third factor included four of the five EQ-5D-3 L items. Conclusion The findings indicate that the ASCOT-Carer, CES and EQ-5D-3 L capture separate constructs of social care-related quality of life (ASCOT-Carer) and carer experience (CES), which partially overlap in relation to activities outside caring and social support, and health-related quality of life (EQ-5D-3 L). The ASCOT-Carer and CES are both promising measures for the evaluation of social care support for carers that capture aspects of quality of life ‘beyond health’. The choice of whether to use the ASCOT-Carer or CES depends on the study objectives.

Context: Measuring the impact of long-term care (LTC) is essential if we are to allocate limited resources effectively.Objectives: We explored the feasibility and validity of a pragmatic approach to evaluation, known as the counterfactual self-estimation of programme participants (CSEPP). CSEPP forms part of the Adult Social Care Outcomes Toolkit (ASCOT), and is referred to as the ‘expected’ method since participants estimate their expected quality of life (QoL) in the absence of services.Methods: We used survey data from interviews with 748 LTC users in 22 English local authorities, which included questions on self- and interviewer-assessed understanding of the ‘expected’ questions. We used these data to assess feasibility. Construct validity was assessed by examining hypothesised associations between the expected score and individual characteristics. Bias was assessed by comparing the CSEPP impact estimate to one produced using the instrumental variables approach used by Forder et al. (2016, 2018) on the same dataset.Findings: We found evidence that the CSEPP/‘expected’ method was feasible and the self-estimated counterfactual outcome scores valid. There were indications that the method is less appropriate for some groups and that it may slightly overestimate the impact of LTC.Limitations: The main limitation is that the between methods comparison assumes that the instrumental variables approach provides a largely unbiased estimate of the effect of LTC, which is unlikely to be the case.Implications: The CSEPP/‘expected’ method is a useful tool in the LTC context, but more research is needed to understand potential sources of bias and its feasibility with certain groups.

Abstract Background Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. Methods Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. Results Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. Conclusions This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research.

Background Safety is a key concern in older adult care homes. However, it is a less developed concept in older adult care homes than in healthcare settings. As part of study of the collection and application of safety data in the care home sector in England, a scoping review of the international literature was conducted.Objectives The aim of the review was to identify measures that could be used as indicators of safety for quality monitoring and improvement in older adult residential or nursing care homes.Sources of evidence Systematic searches for journal articles published in English language from 1 January 1970, without restriction to the study location or country, were conducted in Web of Science, Scopus and PubMed on 28 July 2019.Eligibility criteria Inclusion criteria were: peer-reviewed journal articles; qualitative or quantitative studies of older adult nursing and/or residential care homes; and related to any aspect of safety in care homes, including the safety of healthcare provision in the care home. A total of 45 articles were included after review of the title/abstract or full text against the inclusion criteria.Charting methods Key information was extracted and charted. These findings were then mapped to the Safety Measurement and Monitoring Framework in healthcare (SMMF), adapted by the research team to reflect the care home context, to determine the coverage of different aspects of safety, as well as potential gaps.Results and conclusions Systematic searches for journal articles published in English language from 1 January 1970, without restriction to the study location or country, were conducted in Web of Science, Scopus and PubMed on 28 July 2019. Inclusion criteria were: peer-reviewed journal articles; qualitative or quantitative studies of older adult nursing and/or residential care homes; and related to any aspect of safety in care homes, including the safety of healthcare provision in the care home.A total of 45 articles were included after review of the title/abstract or full text against the inclusion criteria. Key information was extracted and charted. These findings were then mapped to the Safety Measurement and Monitoring Framework in healthcare (SMMF), adapted by the research team to reflect the care home context, to determine the coverage of different aspects of safety, as well as potential gaps.The findings indicate that there are a range of available safety measures used for quality monitoring and improvement in older adult care homes. These cover all five domains of safety in the SMMF. However, there are potential gaps. These include user experience, psychological harm related to the care home environment, abusive or neglectful care practice and the processes for integrated learning. Some of these gaps may relate to challenges and feasibility of measurement in the care home context.

Abstract Background The Adult Social Care Outcomes Toolkit (ASCOT-SCT4) is a multi-attribute utility index designed for the evaluation of long-term social care services. The measure comprises eight attributes that capture aspects of social care-related quality of life. The instrument has previously been validated with a sample of older adults who used home care services in England. This paper aims to demonstrate the instrument’s test-retest reliability and provide evidence for its validity in a diverse sample of adults who use publicly-funded, community-based social care in England. Methods A survey of 770 social care service users was conducted in England. A subsample of 100 services users participated in a follow-up interview between 7 and 21 days after baseline. Spearman rank correlation coefficients between the ASCOT-SCT4 index score and the EQ-5D-3 L, the ICECAP-A or ICECAP-O and overall quality of life were used to assess convergent validity. Data on variables hypothesised to be related to the ASCOT-SCT4 index score, as well as rating of individual attributes, were also collected. Hypothesised relationships were tested using one-way ANOVA or Fisher’s exact test. Test-retest reliability was assessed using the intra-class correlation coefficient for the ASCOT-SCT4 index score at baseline and follow-up. Results There were moderate to strong correlations between the ASCOT-SCT4 index and EQ-5D-3 L, the ICECAP-A or ICECAP-O, and overall quality of life (all correlations ≥ 0.3). The construct validity was further supported by statistically significant hypothesised relationships between the ASCOT-SCT4 index and individual characteristics in univariate and multivariate analysis. There was also further evidence for the construct validity for the revised Food and drink and Dignity items. The test-retest reliability was considered to be good (ICC = 0.783; 95% CI: 0.678–0.857). Conclusions The ASCOT-SCT4 index has good test-retest reliability for adults with physical or sensory disabilities who use social care services. The index score and the attributes appear to be valid for adults receiving social care for support reasons connected to underlying mental health problems, and physical or sensory disabilities. Further reliability testing with a wider sample of social care users is warranted, as is further exploration of the relationship between the ASCOT-SCT4, ICECAP-A/O and EQ-5D-3 L indices.

Abstract 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.