Care home residents’ quality of life and its association with CQC ratings and workforce issues: the MiCareHQ mixed-methods study

BackgroundThe quality of life of people receiving health and social care is an important indicator of service quality, but the relationship between patient experience and outcomes and regulator quality ratings in England is unknown. In 2013, the health and social care regulator in England, the Care Quality Commission (CQC), introduced a new ratings system and by February 2017, all social care services were inspected and awarded new quality ratings (outstanding, good, requires improvement and inadequate). This study aimed to explore whether quality ratings were associated with residents’ quality of life, controlling for confounding variables.MethodsWe conducted a nested, cross-sectional study, collecting social care-related quality of life (SCRQoL) data for 293 older care home residents in 34 care homes (20 nursing and 14 residential) in the South East of England. CQC ratings and other resident and home-level variables were also collected for the analysis. Multilevel modelling explored whether residents’ social care-related quality of life (SCRQoL) was associated with regulator ratings, controlling for confounding variables.ResultsOutstanding and good homes were collapsed into one category and compared with homes requiring improvement. Nationally, only 2 % of care homes for older people are rated as inadequate and it was not possible to capture sufficient numbers for the analysis. We recruited one but it was re-inspected during the fieldwork period and its rating changed to requires improvement. The random intercept multilevel model, which accounted for 16.93% of the differences in SCRQoL within homes and 69.80% between, indicated that better SCRQoL was significantly associated with being female, better functioning, no dementia diagnosis, fewer communication difficulties, and living in a care home rated as outstanding/good by CQC. Size of home and registration category were not significant predictors.ConclusionsThis study found evidence that quality ratings are associated with residents’ SCRQoL. As well as aiming to improve quality and ensure minimum standards, quality ratings have the potential to inform user choice and help the public compare care homes based on quality. Future research to establish the generalisability and replicability of the results is required.

Individuals with advanced multiple sclerosis (MS) have complex care requirements and are more likely to use long-term facilities. This study determined the associations between mood and social care-related quality of life (SCRQOL), and health-related quality of life (HRQOL) and examined the association between HRQOL and SCRQOL. Baseline data from a cohort study were used. Patients completed questionnaires, including the Hospital Anxiety and Depression Scale (HADS), Adult Social Care Outcomes Toolkit (ASCOT), and EuroQOL 5D-5L (EQ-5D-5L) and EQ-Visual Analogue Scale (EQ-VAS). Linear regression analyses were employed to assess the relationships between mood and both outcomes of QOL while controlling for relevant confounding factors (βs; 95% CI). The cross-sectional association between SCRQOL and HRQOL was examined using Pearson correlation coefficients (r). A total of 75 patients, with a mean age of 56.1 years and a disease duration of 17.3 years, were enrolled from a long-term care facility in the Netherlands. Results showed that after controlling for confounders, HADS is an independent determinant of ASCOT (βs = -.368; 95% CI, -.581 to -.154) and EQ-5D-5L (βs = -.297; 95% CI, -.507 to -.087). Also, there are significant but weak correlations between ASCOT and EQ-5D-5L (r = 0.242; 95% CI, .015-.468), between ASCOT and EQ-VAS (r = 0.230; 95% CI, .003-.457) and between EQ-5D-5L and EQ-VAS (r = 0.227; 95% CI, .000-.454). Mood, especially the depression component, is an important determinant of both HRQOL and SCRQOL in advanced MS. Focusing on mood in health care and social care may contribute to the improvement of QOL in a broader sense.

SARS-CoV-2 can spread efficiently within care homes causing outbreaks among residents, who are at increased risk of severe disease, emphasising the importance of stringent infection control in this population.

IntroductionThe adult social care outcomes toolkit (ASCOT) measures social care-related quality of life (SCRQoL) using self-completion questionnaires and interviews. Many care home residents find such methods inaccessible, leading to a reliance on proxy-reporting. This study aimed to establish the psychometric properties of the mixed-methods toolkit [ASCOT-Care Homes, 4 outcome (CH4)] for measuring SCRQoL when residents cannot self-report.MethodsTwo cross-sectional, mixed-methods studies were undertaken in care homes for older people in England between 2015 and 2020. We used the ASCOT-CH4 (observation, and interviews with residents and proxies) to collect information about SCRQoL and collected additional data on residents’ needs and characteristics, and variables hypothesised to be related to SCRQoL.Hypothesis testing was applied to establish construct validity, Cronbach’s alpha for internal consistency and exploratory factor analysis for structural validity.ResultsThe combined dataset included 475 residents from 54 care homes (34 nursing, 20 residential). Half had a diagnosis of dementia. Less than a third of residents were able to complete an ASCOT interview. Observations and proxy interviews informed researcher ratings, meaning there were no missing ASCOT-CH4 scores. ASCOT-CH4 was found to be a weak unidimensional scale, consistent with other ASCOT measures, with acceptable internal consistency (α = 0.77, 8 items). Construct validity was supported by the findings.ConclusionsThe ASCOT-CH4 is an alternative to conventional proxy-questionnaires for measuring the SCRQoL of care home residents, with good psychometric properties. A limitation is that users need a range of data collection skills. Future research should explore whether findings are replicable when data are collected by other researchers.

BackgroundThe Adult Social Care Outcomes Toolkit (ASCOT) measures social care related quality of life (SCRQoL) and can be used to measure outcomes and demonstrate impact across different social care settings. This exploratory study built on previous work by collecting new inter-rater reliability data on the mixed-methods version of the toolkit and exploring how it might be used to inform practice in four case study homes.MethodWe worked with two care home providers to agree an in-depth study collecting SCRQoL data in four case-study homes. Data was collected about residents’ age, ethnicity, cognitive impairment, ability to perform activities of daily living and SCRQoL in the four homes. Feedback sessions with staff and managers were held in the homes two weeks after baseline and follow-up data collected three months later. Interviews with managers explored their views of the feedback and recorded any changes that had been made because of it.ResultsParticipant recruitment was challenging, despite working in partnership with the homes. Resident response rates ranged from 23 to 54 % with 58 residents from four care homes taking part in the research. 53 % lacked capacity to consent. Inter-rater reliability for the ASCOT ratings of SCRQoL were good at time one (IRR = 0.72) and excellent at time two (IRR = 0.76). During the study, residents’ ability to perform activities of daily living declined significantly (z = -2.67, p < .01), as did their expected needs in the absence of services (z = -2.41, p < .05). Despite these rapid declines in functionings, residents’ current SCRQoL declined slightly but not significantly (Z = -1.49, p = .14). Staff responded positively to the feedback given and managers reported implementing changes in practice because of it.ConclusionThis exploratory study faced many challenges in the recruitment of residents, many of whom were cognitively impaired. Nevertheless, without a mixed-methods approach many of the residents living in the care homes would have been excluded from the research altogether or had their views represented only by a representative or proxy. The value of the mixed-methods toolkit and its potential for use by providers is discussed.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1763-1) contains supplementary material, which is available to authorized users.

quality ratings of care homes are used by decision makers in the absence of direct information about outcomes. However, there is little evidence about the relationship between regulators' ratings of homes and residents' quality of life outcomes. to capture social care-related quality of life (SCRQoL) outcomes for residents and investigate the relationship between outcomes and regulator quality ratings of homes. data were collected for 366 residents of 83 English care homes for older people inspected during 2008. Outcomes were measured using the Adult Social Care Outcomes Toolkit (ASCOT). Multivariate multilevel modelling was used to investigate the relationship between quality of life outcomes and star ratings of homes, controlling for resident and home characteristics. care homes were delivering substantial gains in SCRQoL, but were more successful in delivering 'basic' (e.g. personal cleanliness) than higher-order domains (e.g. social participation). Outcomes were associated with quality ratings of residential homes but not of nursing homes. the approach to providing quality ratings by the regulator in England is currently under review. Future quality indicators need to demonstrate their relationship with quality of life outcomes if they are to be a reliable guide to commissioners and private individuals purchasing care.

<strong>Context:</strong> Poorer mortality rates and quality of care in hospitals outside of office hours is well documented. The literature on adult social (long-term) care, and in particular, care homes, is much less developed. There are, however, a few studies that suggest that outside of Monday to Friday between 9.00am and 16.30pm, quality of care in care homes might be lower. <strong>Objective(s):</strong> The objective of this study was to compare the social care-related quality of life (SCRQoL) of residents in older adult care homes during office hours (0900 to 16.30) with outside of office hours (evenings and weekends). <strong>Method(s):</strong> We conducted a nested, cross-sectional study, collecting SCRQoL data using the Adult Social Care Outcomes Toolkit at two time points, office hours (Monday-Friday between 9.00 and 16.30) and outside of office hours. We did not examine nigh times in the homes. Data were collected for 99 older adult care home residents in 13 care homes (5 residential and 8 nursing) and analysed using a combination of non-parametric and parametric techniques. <strong>Findings:</strong> SCRQoL ratings were lower during the weekends and early evenings than during office hours. The differences were most pronounced in the higher order domains of social participation, occupation and control over daily life.<br />Limitations: The study struggled to explain this variation. This work was both exploratory and small in size. We also did not collect data on levels of staffing. <strong>Implications:</strong> Further work is required to both confirm our findings and explore the reasons for the difference. Nonetheless, this study challenges the traditional model of care, in which social activities and meaningful pastimes are mostly organised during ‘office hours’. We observed evenings that were very short, as residents tended to return to their room shortly after dinner, and quiet weekends, and this was reflected in residents’ quality of life. This is contrary to the rhetoric of care homes being people’s own homes, where they would be able to choose to remain active and engaged into the evening and on the weekends, as they may have done throughout their lives.

PurposeIn developed countries, progressive rapid aging is increasing the need for social care. This study aimed to determine Japanese utility weights for the Adult Social Care Outcomes Toolkit (ASCOT) four-level self-completion questionnaire (SCT4).MethodsWe recruited 1050 Japanese respondents from the general population, stratified by sex and age, from five major cities. In the best–worst scaling (BWS) phase, respondents ranked various social care-related quality of life (SCRQoL) states as “best,” “worst,” “second-best,” or “second-worst,” as per the ASCOT. Then, respondents were asked to evaluate eight different SCRQOL states by composite time-trade off (cTTO). A mixed logit model was used to analyze BWS data. The association between cTTO and latent BWS scores was used to estimate a scoring formula that would convert BWS scores to SC-QALY (social care quality-adjusted life year) scores.ResultsJapanese BWS weightings for ASCOT-SCT4 were successfully estimated and found generally consistent with the UK utility weights. However, coefficients on level 3 of “Control over daily life” and “Occupation” domains differed markedly between Japan and the UK. The worst Japanese SCRQoL state was lower than that for the UK, as Japanese cTTO results showed more negative valuations. In general, Japanese SC-QALY score (for more than 90% of health states) was lower than that for the UK.ConclusionsWe successfully obtained Japanese utility weights for ASCOT SCT4. This will contribute to the measurement and understanding of social care outcomes.

BackgroundAlongside an increased policy and practice emphasis on outcomes in social care, English local authorities are now obliged to review quality at a service level to help in their new role of ensuring the development of diverse and high-quality care markets to meet the needs of all local people, including self-funders. The Adult Social Care Outcomes Toolkit (ASCOT) has been developed to measure the outcomes of social care for individuals in a variety of care settings. Local authorities have expressed an interest in exploring how the toolkit might be used for their own purposes, including quality monitoring. This study aimed to explore how the care homes version of the ASCOT toolkit might be adapted for use as a care home quality indicator and carry out some preliminary testing in two care homes for older adults.MethodsConsultations were carried out with professional and lay stakeholders, with an interest in using the tool or the ratings it would produce. These explored demand and potential uses for the measure and fed into the conceptual development. A draft toolkit and method for collecting the data was developed and the feasibility of using it for quality monitoring was tested with one local authority quality monitoring team in two homes for older adults.ResultsStakeholders expressed an interest in care home quality ratings based on residents’ outcomes but there were tensions around who might collect the data and how it might be shared. Feasibility testing suggested the measure had potential for use in quality monitoring but highlighted the importance of training in observational techniques and interviewing skills. The quality monitoring officers involved in the piloting recommended that relatives’ views be collected in advance of visits, through surveys not interviews.ConclusionsFollowing interest from another local authority, a larger evaluation of the measure for use in routine quality monitoring is planned. As part of this, the ratings made using this measure will be validated against the outcomes of individual residents and compared with the quality ratings of the regulator, the Care Quality Commission.

BackgroundThe ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly funded social care services in England.MethodsUnpaid carers were identified through a survey of users of publicly funded social care services in England. Three hundred and eighty-seven carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (e.g. characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses.ResultsThe construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (seven items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1 %) indicates a high level of acceptance.ConclusionThe results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age.

Outcome evaluations using patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare, including long-term care and disability support. The Adult Social Care Outcomes Toolkit (ASCOT) is a self-reported measure that assesses social care-related quality of life (SCRQoL), which can be affected by long-term care services. This study examined the validity and reliability of the Japanese ASCOT four-level Self-Completion Tool (SCT4) for people with mental illnesses who used community services. We conducted a cross-sectional survey of persons with mental illnesses who used community services in 22 facilities across Japan. Confirmatory factor analysis (CFA) was performed to confirm the factor structure. Spearman’s rank correlation coefficients were calculated to assess the convergent validity of health-related quality of life (HRQoL), personal agency, well-being, depressive symptoms, functional assessment, and objective quality of life (QoL). Cronbach’s alpha and intra-class correlation coefficients (ICC) were computed to assess internal consistency and test-retest reliability, respectively. In total, 397 service users agreed to participate, and 64 completed the Japanese ASCOT SCT4 twice to assess test-retest reliability. The model fit indices indicated chi-squared statistic /degrees of freedom (CMIN/df) = 1.069 (p = 0.375), root mean square error of approximation (RMSEA) = 0.013, standardized root mean square residual (SRMR) = 0.026, comparative fit index (CFI) = 0.998, and Tucker-Lewis index (TLI) = 0.997. The Japanese ASCOT SCT4 demonstrated significant correlations with HRQoL (ρ = 0.619, p < 0.001), personal agency (ρ = 0.502, p < 0.001), well-being (ρ = 0.657, p < 0.001), depressive symptoms (ρ = -0.657, p < 0.001), and functional assessment (self-reported version: ρ = -0.616, p < 0.001; observer-reported version: ρ = -0.242, p < 0.001), and objective QoL (ρ = 0.240, p < 0.001). Cronbach’s alpha and ICC were 0.76 and 0.71, respectively. The Japanese ASCOT SCT4 can be potentially useful as a PROM to easily assess the SCRQoL of individuals with mental illness who use community services. Future studies should use additional validity tests with more diverse samples.

BackgroundBehavioral and psychological symptoms of dementia (BPSD) in patients with Alzheimer's disease (AD) may seriously impact caregiver burden and, therefore, quality of care.ObjectiveTo clarify the association of BPSD and BPSD subtypes with caregiver burden and quality of life (QOL) among caregivers of patients with AD in Japan in a multidimensional manner.MethodsThis descriptive, cross-sectional, community-based survey involved administering a web-based questionnaire to live-in caregivers of patients with AD registered with Macromill Inc. BPSD prevalence was measured using the Japanese version of the Neuropsychiatric Inventory-Questionnaire Form. The Japanese version of the Zarit Caregiver Burden Scale (J-ZBI), EQ-5D-5L, and Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) were used to assess caregiver burden, health-related QOL, and social care-related QOL, respectively.ResultsOf 705 survey responders, 639 (90.6%) and 66 (9.4%) cared for patients with and without BPSD, respectively. Mean caregiver age was 54.6 years, 56.9% were male, and 84.0% cared for parents or in-laws. In the "with BPSD" group, the J-ZBI score was higher (mean difference [95% confidence interval], 6.7 [4.5, 9.0]; p < 0.001), while EQ-5D-5L and ASCOT-Carer scores were lower (-0.076 [-0.134, -0.018; p = 0.010] and -0.101 [-0.168, -0.033]; p = 0.003, respectively) than in the "without BPSD" group.ConclusionsA significant association between increased caregiver burden and BPSD in patients with AD was demonstrated, which may be associated with decreased caregiver healthcare and social care-related QOL.

An increasingly aging population, accompanied by a shortage of residential aged care homes and workforce and consumer feedback, has driven a growing interest in enabling older people to age in place through home-based care. In this context, smart home technologies for remote health monitoring have gained popularity for supporting older people to live in their own homes. This study aims to investigate the impact of smart home monitoring on multiple outcomes, including quality of life, activities of daily living, and depressive symptoms among older people living in their own homes over a 12-month period. We conducted an open-label, parallel-group randomized controlled trial. The control group continued to receive their existing care from aged care service providers. Meanwhile, the intervention group, in addition to receiving their usual aged care services, had their activities of daily living monitored using a smart home platform. Surveys including the Adult Social Care Outcomes Toolkit (ASCOT), EuroQol-5 Dimensions-5 Levels (EQ-5D-5L), Katz Index of Independence in Activities of Daily Living (Katz ADL), Lawton Instrumental Activities of Daily Living Scale (IADL), and Geriatric Depression Scale (GDS) were conducted at baseline and 6 and 12 months from baseline. Linear mixed-effects models were used to compare the difference between the intervention and control groups, with the ASCOT as the primary outcome measure. Data from 130 participants were used in the analysis, with no significant differences in baseline characteristics between the control group (n=61) and the intervention group (n=69). In comparison to the control group, the intervention group had a higher ASCOT score at the 6-month assessment (mean difference 0.045, 95% CI 0.001 to 0.089; Cohen d=0.377). However, this difference did not persist at the 12-month assessment (mean difference 0.031, 95% CI -0.014 to 0.076; Cohen d=0.259). There were no significant differences in EQ-5D-5L, Katz ADL, IADL, and GDS observed between the intervention and control groups at the 6-month and 12-month assessments. The study demonstrates that smart home monitoring can improve social care-related quality of life for older people living in their own homes. However, the improvement was not sustained over the long term. The lack of statistically significant findings and diminished long-term improvements may be attributed to the influence of the COVID-19 pandemic during the later stage of the trial. Further research with a larger sample size is needed to evaluate the effect of smart home monitoring on broader quality-of-life measures. Australian New Zealand Clinical Trials Registry ACTRN12618000829213; https://tinyurl.com/2n6a75em. RR2-10.2196/31970.

With a key goal of the long-term care system being to maintain the Quality of Life (QOL) of service users, this chapter introduces the Adult Social Care Outcomes Toolkit (ASCOT), a QOL outcome developed to measure Social Care-Related Quality of Life (SCRQoL), specifically for community-living adult care recipients and their informal family caregivers. This chapter explored whether the mutual interdependence of SCRQoL within cohabiting care recipient-caregiver dyads was associated with their overall satisfaction toward home-based rehabilitation services. This chapter revealed a significant positive actor effect of care recipients’ SCRQoL on their own satisfaction, highlighting the crucial role of service satisfaction given the substantial impact of long-term care services on their home-based lives. Recognizing the vital supportive role of family caregivers in care recipients’ community living, this chapter recommends that therapists providing home-based rehabilitation services utilize the ASCOT to capture SCRQoL in both care recipients and their family caregivers.

The aim of this study was to develop a measure of social care outcome, an equivalent to the quality-adjusted life year (QALY) in health, which could be used in a range of circumstances. The project drew on previous and parallel work developing the Adult Social Care Outcome Toolkit and the national Adult Social Care Survey. We developed and tested an instrument designed to reflect service users' social care-related quality of life (SCRQoL) and tested it with 30 service users from a variety of user groups and 300 older home care service users. In parallel, we explored discrete choice experiment (DCE) and best-worst scaling (BWS) approaches to preference elicitation with 300 members of the general population, and cognitively tested these with service users. We also cognitively tested a computer-aided time trade-off (TTO) exercise using SCRQoL attributes with members of the general population. In the second phase, using the finalised instruments, BWS interviews were conducted with 500 members of the general population, TTO interviews with a follow-up sample of 126 of these respondents, and BWS interviews with 458 people using equipment services. The final measure had eight domains: personal cleanliness and comfort, accommodation cleanliness and comfort, food and drink, safety, social participation and involvement, occupation, control over daily life and dignity. In addition to measuring current SCRQoL, the instrument includes questions used to establish service users' views of their 'expected' SCRQoL in the absence of services. The difference between a person's current and 'expected' SCRQoL provides an indicator of service impact. There was good evidence for the validity of the descriptive system and the validity of the current, expected and SCRQoL gain scales. The DCE and BWS approaches yielded similar results and, once introductions made clear, were understood by service users. BWS was used for the main stages, as it had technical and cognitive advantages. The computer-aided approach to TTO worked well, and respondents found questions acceptable and understandable. There were no substantive differences in the preferences of service users and the general population. The key domain was control over daily life, with the lowest and highest levels strongly estimated in all models. After allowing for observable heterogeneity, service users' preferences appeared to be more closely associated with their own SCRQoL than with those of the general population. The consistency of the results with the results of a previous study allowed the final model to be based on the preferences of 1000 members of the general population. A formula based on the relationship between TTO and BWS values was estimated for a social care QALY, with '0' equivalent to 'being dead' and '1' being the 'ideal' SCRQoL state. Members of the population experienced significantly higher SCRQoL than service users. Although further work is needed, particularly to develop an equivalent measure for informal carers and to explore the links with health QALYs, the measure has considerable potential. A number of methodological advances were achieved, including the first application of TTO in a social care context and use of BWS to establish service user preferences. The National Institute for Health Research Health Technology Assessment programme.