Quality of life outcomes for informal carers of long-term care service users in Austria, England and Finland.

PURPOSE: The provision and funding of long-term care (LTC) for older people varies between European countries. Despite differences, there is limited information about the comparative performance of LTC systems in Europe. In this study, we compared quality of life (QoL) of informal carers of home care service users in Austria, England and Finland. METHODS: Informal carers were surveyed in Austria, England and Finland. The study data (n = 835) contained information on social care-related quality of life (SCRQoL) associated with the ASCOT-Carer measure, and characteristics of carers and care recipients from each country. We applied risk-adjustment methods using a fractional regression model to produce risk-adjusted SCRQoL scores for the comparative analysis. In a sensitivity analysis, we applied multiple imputation to missing data to validate our findings. RESULTS: We found that the mean values of the risk-adjusted SCRQoL of informal carers in England were 1.4-2.9% and 0.3-0.5% higher than in Finland and Austria, and the mean values of the risk-adjusted SCRQoL of carers in Austria were 0.8-2.7% higher than in Finland. Differences in the mean values of the country-specific risk-adjusted SCRQoL scores were small and statistically non-significant. English informal carers were less healthy and co-resided with care resipients more often than carers in Austria or Finland. CONCLUSION: Small differences between the risk-adjusted SCRQoL scores between Austria, England and Finland are consistent with the observation that the countries provide different types of support for informal carers. Our results help local and national decision-makers in these countries to benchmark their informal care support systems.

Japanese preference weights of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer).

PURPOSE: We developed preference weights of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) in Japan. METHODS: We used best-worst scaling (BWS) and composite time trade-off (cTTO) to determine the preference weights for ASCOT-Carer states in the general population. TTO values were applied to convert the BWS scores to utilities. The sample number was approximately 1000 for the BWS survey and 200 for the TTO survey. Whereas face-to-face surveys by computer-assisted interviewing were adopted for the TTO tasks, a web-based survey was used for the BWS tasks. In the BWS tasks, the ASCOT-Carer states were presented, and the "best," "worst," "second best," and "second worst" domains in a profile were selected. A mixed logit model was applied to the BWS data. RESULTS: The respondents' background was similar to that of the general population, although the number of people in the age and sex categories was equal. The preference weights for calculating the utilities of the ASCOT-Carer states were estimated. The estimated utilities of the ASCOT-Carer states were distributed between 1 and 0.02. All preference weights were consistent. The item with the highest preference weight was level 1 in the "space and time to be yourself." The least preferred item was level 4 in the "space and time to be yourself" and "control over daily life" domains. CONCLUSION: We established Japanese preference weights for ASCOT-Carer states, the first weights of an Asian country. The estimated utilities can contribute to the measurement of caregivers' social care-related QoL and perform of cost-effectiveness analyses.

What's important when caring for a loved one? Population-based preference weights for the Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) for Austria.

PURPOSE: The Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) can be used to assess long-term care-related quality of life (LTC-QoL) of adult informal carers of persons using LTC services. The ASCOT-Carer instrument has been translated into several languages, but preference weights reflecting the relative importance of different outcome states are only available for England so far. In this paper, we estimated preference weights for the German version of the ASCOT-Carer for Austria and investigated the value people place on different QoL-outcome states. METHODS: We used data from a best-worst scaling (BWS) experiment and estimated a scale-adjusted multinomial logit (S-MNL) model to elicit preference weights for the ASCOT-Carer domain-levels. Data were collected using an online survey of the Austrian general population (n = 1001). RESULTS: Top levels in the domains of 'Space and time to be yourself', 'Occupation' and 'Control over daily life' were perceived as providing the highest utility, and states with high needs in the same domains seen as particularly undesirable. 'Personal safety' was the only domain where levels were roughly equidistant. In all other domains, the difference between the top two levels ('ideal state' and 'no needs') was very small. CONCLUSION: The paper provides preference weights for the German version of ASCOT-Carer to be used in Austrian populations. Furthermore, the results give insight into which LTC-QoL-outcomes are seen as particularly (un)desirable, and may therefore help to better tailor services directed at informal carers and the persons they care for.

Translation, cultural adaptation and construct validity of the German version of the Adult Social Care Outcomes Toolkit for informal Carers (German ASCOT-Carer).

PURPOSE: The Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), developed in England, measures the effects of long-term care (LTC) services and carer support on informal carers' quality of life (QoL). Translations of the ASCOT-Carer into other languages are useful for national and cross-national studies. The aim of this paper was to report on the translation and cultural adaptation of the original English ASCOT-Carer into German, to assess its content validity and to test for its construct validity (convergent and discriminative/known-group validity). METHODS: Translation and cultural adaptation followed the ISPOR TCA guidelines. As part of the translation and adaptation process, five cognitive debriefing interviews with informal carers were used for evaluating linguistic and content validity. In addition, a sample of 344 informal carers of older adults, who received home care services in Austria, was used for hypothesis testing as suggested by the COSMIN checklist to assess convergent and discriminative/known-group validity as part of construct validity. RESULTS: Cognitive interviews provided evidence that questions and response options of the German ASCOT-Carer were understood as intended. Associations between ASCOT-Carer scores/domains and related outcome measures (convergent validity) and expected groups of informal carers and the care service users they care for (discriminative validity) supported construct validity of the translated instrument. CONCLUSION: The German ASCOT-Carer instrument meets the required standards for content and construct validity which supports its usefulness for (cross-)national studies on LTC-service-related QoL-outcomes in informal carers. Research is encouraged to assess further measurement properties of the translated instrument.

Cross-cultural adaptation and construct validity of the German version of the Adult Social Care Outcomes Toolkit for service users (German ASCOT).

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.

Development of Japanese utility weights for the Adult Social Care Outcomes Toolkit (ASCOT) SCT4.

PURPOSE: In 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). METHODS: We 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. RESULTS: Japanese 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. CONCLUSIONS: We successfully obtained Japanese utility weights for ASCOT SCT4. This will contribute to the measurement and understanding of social care outcomes.

COVID-19: Implications for the Support of People with Social Care Needs in England.

This perspective examines the challenge posed by COVID-19 for social care services in England and describes responses to this challenge. People with social care needs experience increased risks of death and deteriorating physical and mental health with COVID-19. Social isolation introduced to reduce COVID-19 transmission may adversely affect well-being. While the need for social care rises, the ability of families and social care staff to provide support is reduced by illness and quarantine, implying reductions in staffing levels. Consequently, COVID-19 could seriously threaten care availability and quality. The government has sought volunteers to work in health and social care to help address the threat posed by staff shortages at a time of rising need, and the call has achieved an excellent response. The government has also removed some barriers to effective coordination between health and social care, while introducing measures to promote the financial viability of care providers. The pandemic presents unprecedented challenges that require well-co-coordinated responses across central and local government, health services, and non-government sectors.

Carer Social Care-Related Quality of Life Outcomes: Estimating English Preference Weights for the Adult Social Care Outcomes Toolkit for Carers.

BACKGROUND: There is increasing interest in assessing the effects of interventions on older people, people with long-term conditions and their informal carers for use in economic evaluation. The Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) is a measure that specifically assesses the impact of social care services on informal carers. To date, the ASCOT-Carer has not been preference-weighted. OBJECTIVES: To estimate preference-based index values for the English version of the ASCOT-Carer from the general population in England. METHODS: The ASCOT-Carer consists of 7 domains, each reflecting aspects of social care-related quality of life in informal carers. Preferences for the ASCOT-Carer social care-related quality of life states were estimated using a best-worst scaling exercise in an online survey. The survey was administered to a sample of the general adult population in England (n = 1000). Participants were asked to put themselves into the hypothetical state of being an informal carer and indicate which attribute they thought was the best (first and second) and worst (first and second) from a profile list of 7 attributes reflecting the 7 domains, each ranging at a different level (1-4). Multinomial logit regression was used to analyze the data and estimate preference weights for the ASCOT-Carer measure. RESULTS: The most valued aspect by English participants was the 'occupation' attribute at its highest level. Results further showed participants rated having no control over their daily life as the lowest attribute-level of all those presented. The position of the 7 attributes influenced participants' best and worst choices, and there was evidence of both scale and taste heterogeneity on preferences. CONCLUSION: This study has established a set of preference-based index values for the ASCOT-Carer in England derived from the best-worst scaling exercise that can be used for economic evaluation of interventions on older individuals and their informal carers.

Measuring the outcomes of long-term care for unpaid carers: comparing the ASCOT-Carer, Carer Experience Scale and EQ-5D-3 L.

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.

Japanese translation and cross-cultural validation of the Adult Social Care Outcomes Toolkit (ASCOT) in Japanese social service users.

BACKGROUND: The aim of this study was to develop and perform cross-cultural validation of a Japanese version of the Adult Social Care Outcomes Toolkit (ASCOT) four-level Self-Completion questionnaire (SCT4) instrument to measure Social-Care Related Quality of Life. It was important to develop a Japanese version of the ASCOT-SCT4 and validate it in the Japanese context, given the interest in measuring outcomes of social care services in Japan. METHODS: The original version of ASCOT-SCT4 was translated into Japanese following good practice guidelines. Additionally, comments and feedback were obtained from an independent committee engaged in managing and providing social care services to refine the flow of sentences of the newly developed translated version. The resulting version was tested for cross-cultural validation among community-dwelling adults who use social care services to confirm the factorial structure and the scale system of the Japanese version, using Structural Equation Modeling and Item Response Theory. RESULTS: Vigorous discussion was needed to translate the original version into Japanese especially for the items control over daily life and dignity. These two items were linguistically difficult to express in everyday language so potential participants could easily understand the intended concepts. In the cross-cultural validation, we obtained values for model fit within the acceptable range: between 0.706 and 0.550 for factor loadings, 0.923 for the Comparative Fit Index, 0.910 for the Tucker-Lewis Index, and 0.083 for the Root Mean Square Error of Approximation. This confirmed the factorial structure of the Japanese version. The IRT analysis, however, revealed that the scale system needed refinement to facilitate appropriate differentiation between each response option. CONCLUSIONS: This study provided preliminary evidence that the Japanese version of ASCOT-SCT4 is valid. As a result, the Japanese version was finalized and approved by the instrument developer.

Comparing internet and face-to-face surveys as methods for eliciting preferences for social care-related quality of life: evidence from England using the ASCOT service user measure.

PURPOSE: Traditionally, researchers have relied on eliciting preferences through face-to-face interviews. Recently, there has been a shift towards using internet-based methods. Different methods of data collection may be a source of variation in the results. In this study, we compare the preferences for the Adult Social Care Outcomes Toolkit (ASCOT) service user measure elicited using best-worst scaling (BWS) via a face-to-face interview and an online survey. METHODS: Data were collected from a representative sample of the general population in England. The respondents (face-to-face: n = 500; online: n = 1001) completed a survey, which included the BWS experiment involving the ASCOT measure. Each respondent received eight best-worst scenarios and made four choices (best, second best, worst, second worst) in each scenario. Multinomial logit regressions were undertaken to analyse the data taking into account differences in the characteristics of the two samples and the repeated nature of the data. RESULTS: We initially found a number of small significant differences in preferences between the two methods across all ASCOT domains. These differences were substantially reduced-from 15 to 5 out of 30 coefficients being different at the 5% level-and remained small in value after controlling for differences in observable and unobservable characteristics of the two samples. CONCLUSIONS: This comparison demonstrates that face-to-face and internet surveys may lead to fairly similar preferences for social care-related quality of life when differences in sample characteristics are controlled for. With or without a constant sampling frame, studies should carefully design the BWS exercise and provide similar levels of clarification to participants in each survey to minimise the amount of error variance in the choice process.

The impact of long-term care on quality of life.

Long-term care services are provided to help people manage the consequences of impairment, but their impact goes beyond the meeting of basic needs. Accordingly, the main aim was to explore the marginal effectiveness of care when measured in terms of people's overall care-related quality of life (CRQoL) and assess changes in marginal effect for increasing intensity. The associated aim was to refine and apply an observational method to estimate marginal effectiveness. A "production function" approach was used with survey data, including Adult Social Care Outcomes Toolkit-measured CRQoL, whereby we statistically modelled the expected relationship between service utilisation rates and CRQoL. This method seeks to limit endogeneity issues by controlling on observables and using instrumental variable. Using a survey of publicly funded long-term care service users in England, we found that community-based long-term care significantly improved people's CRQoL but with diminishing marginal effects and effects differentiated by baseline impairment levels. There are implications for how the care system should respond to changes in global public budgets. For example, where there is unmet need, a system aimed to maximise (unadjusted) CRQoL would put more emphasis on access (more recipients) than intensity of support compared to a system operating on a needs basis.

Validity and test-retest reliability of the self-completion adult social care outcomes toolkit (ASCOT-SCT4) with adults with long-term physical, sensory and mental health conditions in England.

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.

A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers.

PURPOSE: Unpaid care is an important source of support of people with long-term conditions. Interdependence of carers' and care recipients' quality of life would be expected due to the relational nature of caregiving. This study aims to explore interdependence of quality of life in carer/care-recipient dyads, especially in relation to mutual interdependence due to social feedback in the caregiving relationship and also the partner effects of one partner's experience of long-term care support on the other's outcomes. METHODS: Using data collected in an interview survey of 264 adults with care support needs and their unpaid carers in England, we employed regression analysis to explore whether there is mutual interdependence of care-related quality of life within carer/care-recipient dyads for three quality of life attributes: Control over daily life, Social participation and Occupation. The influence of factors, including satisfaction with long-term care, were also considered on individuals' and dyad partners' care-related quality of life. RESULTS: We found mutual interdependence of quality of life at the dyad-level for Control over daily life, but not Occupation or Social participation. A partner effect of care recipients' satisfaction with long-term care on carers' Control over daily life was also observed. Higher care recipient satisfaction with care services was associated with higher Control over daily life. By contrast, for Social participation and Occupation, there were only significant effects of care recipients' satisfaction with long-term care and their own quality of life. CONCLUSIONS: These findings highlight the importance of considering the wider impact beyond the individual of long-term care on quality of life in the evaluation of long-term care policy and practice.

Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer).

BACKGROUND: The 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. METHODS: Unpaid 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. RESULTS: The 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. CONCLUSION: The 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.

Using cost-effectiveness estimates from survey data to guide commissioning: an application to home care.

The aim is to describe and trial a pragmatic method to produce estimates of the incremental cost-effectiveness of care services from survey data. The main challenge is in estimating the counterfactual; that is, what the patient's quality of life would be if they did not receive that level of service. A production function method is presented, which seeks to distinguish the variation in care-related quality of life in the data that is due to service use as opposed to other factors. A problem is that relevant need factors also affect the amount of service used and therefore any missing factors could create endogeneity bias. Instrumental variable estimation can mitigate this problem. This method was applied to a survey of older people using home care as a proof of concept. In the analysis, we were able to estimate a quality-of-life production function using survey data with the expected form and robust estimation diagnostics. The practical advantages with this method are clear, but there are limitations. It is computationally complex, and there is a risk of misspecification and biased results, particularly with IV estimation. One strategy would be to use this method to produce preliminary estimates, with a full trial conducted thereafter, if indicated.

An assessment of the construct validity of the ASCOT measure of social care-related quality of life with older people.

BACKGROUND: The adult social care outcomes toolkit (ASCOT) includes a preference-weighted measure of social care-related quality of life for use in economic evaluations. ASCOT has eight attributes: personal cleanliness and comfort, food and drink, control over daily life, personal safety, accommodation cleanliness and comfort, social participation and involvement, occupation and dignity. This paper aims to demonstrate the construct validity of the ASCOT attributes. METHODS: A survey of older people receiving publicly-funded home care services was conducted by face-to-face interview in several sites across England. Additional data on variables hypothesised to be related and unrelated to each of the attributes were also collected. Relationships between these variables and the attributes were analysed through chi-squared tests and analysis of variance, as appropriate, to test the construct validity of each attribute. RESULTS: 301 people were interviewed and approximately 10% of responses were given by a proxy respondent. Results suggest that each attribute captured the extent to which respondents exercised choice in how their outcomes were met. There was also evidence for the validity of the control over daily life, occupation, personal cleanliness and comfort, personal safety, accommodation cleanliness and comfort, and social participation and involvement attributes. There was less evidence regarding the validity of the food and drink and dignity attributes, but this may be a consequence of problems finding good data against which to validate these attributes, as well as problems with the distribution of the food and drink item. CONCLUSIONS: This study provides some evidence for the construct validity of the ASCOT attributes and therefore support for ASCOT's use in economic evaluation. It also demonstrated the feasibility of its use among older people, although the need for proxy respondents in some situations suggests that developing a version that is suitable for proxies would be a useful future direction for this work. Validation of the instrument on a sample of younger social care users would also be useful.

Exploring the structural characteristics of the Adult Social Care Outcomes Toolkit (ASCOT) and ASCOT-Carer.

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 (PBMs), 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 (SCRQoL) - specifically, the ASCOT and 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 measurement models may apply to ASCOT. The mixed measurement 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 measurement 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.

For many people living with long-term health conditions or disabilities, community-based social care services (like, home care) enable them to maintain independence, stay connected, and to live well. For families and friends who care for someone ('carers'), these services may also help them. They may allow carers to continue in paid employment and to have time for hobbies, friendships, to stay healthy, and connect with others in a similar situation. An important question is what type(s) of community-based services, best support people and their carers. To find this out, we need a way of measuring the effect services have on people's lives. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that might be affected by social care services (for example, having control over everyday life). This questionnaire has already been used by researchers and care providers to review how well social care services support people. There is also another version of the questionnaire called the ASCOT-Carer, which looks at aspects of life that are important to carers. There has been interest in culturally adapting and translating these measures into other languages. However, there are different ways of establishing how well a translated version relates back to the original. This is important to make sure that the new version is measuring what we expect it to. In this paper, we compare different ways of understanding the information collected using the ASCOT and ASCOT-Carer in England. This will inform how to approach the testing of ASCOT (and other similar measures) that have been translated into new languages. It also helps us to understand how different aspects of life that are supported by social care services are related to each other. This can inform our understanding of people's needs and how to best support them.

Theory-based evaluation of three research-practice partnerships designed to deliver novel, sustainable collaborations between adult social care research and practice in the UK: a research protocol for a 'layered' contributions analysis and realist evaluation.

INTRODUCTION: Research-practice partnerships (RPPs) are long-term collaborations between research and practice that aim to conduct research that can be used to make practice-based improvements. They intentionally bring together diverse experience in decision making and seek to shift power dynamics so that all partners have a say. The Creating Care Partnerships project aims to explore whether the RPP approach developed within the US educational context can be successfully applied to the English care home context. The project involves a programme of codesign, implementation and evaluation within three case study sites. This protocol set outs the aims, research design and governance of the evaluation. METHODS AND ANALYSIS: The evaluation takes a theory-based approach to explore how, why and in what circumstances RPPs in the care home context contribute to enhancing research and research use in local care homes and informing wider improvement efforts. A mixed-methods design will be used for each case study, including semistructured interviews, observations of RPP events and meetings, an online survey, activity diary and review of local data and documents. Data collection will proceed in waves, with the theory of change (ToC) being continually refined and used to guide further data collection and analysis. Insights will be drawn using Contribution Analysis, Realist Evaluation and systems perspectives to assess the contribution made by the case study sites to achieving outcomes and the influence of contextual factors. Economic consequences will be identified through the ToC, using a narrative economic analysis to assess costs, consequences and value for money. ETHICS AND DISSEMINATION: The study has undergone ethics review by HRA Research Ethics Committee. It does not pose major ethical issues. A final report will be published and articles will be submitted to international journals.

Valuing informal carers' quality of life using best-worst scaling-Finnish preference weights for the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer).

This study developed Finnish preference weights for the seven-attribute Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer) and investigated survey fatigue and learning in best-worst scaling (BWS) experiments. An online survey that included a BWS experiment using the ASCOT-Carer was completed by a sample from the general population in Finland. A block of eight BWS profiles describing different states from the ASCOT-Carer were randomly assigned to each respondent, who consecutively made four choices (best, worst, second best and second worst) per profile. The analysis panel data had 32,160 choices made by 1005 respondents. A scale multinomial logit (S-MNL) model was used to estimate preference weights for 28 ASCOT-Carer attribute levels. Fatigue and learning effects were examined as scale heterogeneity. Several specifications of the generalised MNL model were employed to ensure the stability of the preference estimates. The most and least-valued states were the top and bottom levels of the control over daily life attribute. The preference weights were not on a cardinal scale. We observed the position effect of the attributes on preferences associated with the best or second-best choices. A learning effect was found. The established preference weights can be used in evaluations of the effects of long-term care services and interventions on the quality of life of service users and caregivers. The learning effect implies a need to develop study designs that ensure equal consideration to all profiles (choice tasks) in a sequential choice experiment.