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.

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.

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.

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.

Towards a Program Theory for Family-Focused Practice in Adult Mental Health Care Settings: An International Interview Study With Program Leaders.

Objectives: In several high-income countries, family-focused practice programs have been introduced in adult mental health care settings to identify and support children whose parents live with mental health problems. Whilst their common goal is to reduce the impact of parental mental illness on children, the mechanisms by which they improve outcomes in different systems and settings are less well known. This kind of knowledge can importantly contribute to ensuring that practice programs achieve pre-defined impacts. Methods: The aim of this study was to develop knowledge about relationships between contextual factors, mechanisms and impact that could inform a program theory for developing, implementing, and evaluating family-focused practice. Principles of a realist evaluation approach and complex system thinking were used to conceptualize the design of semi-structured in-depth interviews with individuals who led the implementation of programs. Seventeen individuals from eight countries participated in the study. Results: Interviewees provided rich accounts of the components that programs should include, contextual factors in which they operated, as well as the behavior changes in practitioners that programs needed to achieve. Together with information from the literature, we developed an initial program theory, which illustrates the interconnectedness between changes that need to co-occur in practitioners, parents, and children, many of which related to a more open communication about parental mental health problems. Stigma, risk-focused and fragmented health systems, and a lack of management commitment were the root causes explaining, for example, why conversations about parents' mental illness did not take place, or not in a way that they could help children. Enabling practitioners to focus on parents' strengths was assumed to trigger changes in knowledge, emotions and behaviors in parents that would subsequently benefit children, by reducing feelings of guilt and improving self-esteem. Conclusion: To our knowledge, this is the first research, which synthesizes knowledge about how family-focused practice programs works in a way that it can inform the design, implementation, and evaluation of programs. Stakeholder, who fund, design, implement or evaluate programs should start co-developing and using program theories like the one presented in this paper to strengthen the design and delivery of family-focused practice.

Do You Prefer Safety to Social Participation? Finnish Population-Based Preference Weights for the Adult Social Care Outcomes Toolkit (ASCOT) for Service Users.

Introduction. The Adult Social Care Outcomes Toolkit (ASCOT) was developed in England to measure people's social care-related quality of life (SCRQoL). Objectives. The aim of this article is to estimate preference weights for the Finnish ASCOT for service users (ASCOT). In addition, we tested for learning and fatigue effects in the choice experiment used to elicit the preference weights. Methods. The analysis data (n = 1000 individuals) were obtained from an online survey sample of the Finnish adult general population using gender, age, and region as quotas. The questionnaire included a best-worst scaling (BWS) experiment using ASCOT. Each respondent sequentially selected four alternatives (best, worst; second-best, second-worst) for eight BWS tasks (n = 32,000 choice observations). A scale multinomial logit model was used to estimate the preference parameters and to test for fatigue and learning. Results. The most and least preferred attribute-levels were "I have as much control over my daily life as I want" and "I have no control over my daily life." The preference weights were not on a cardinal scale. The ordering effect was related to the second-best choices. Learning effect was in the last four tasks. Conclusions. This study has developed a set of preference weights for the ASCOT instrument in Finland, which can be used for investigating outcomes of social care interventions on adult populations. The learning effect calls for the development of study designs that reduce possible bias relating to preference uncertainty at the beginning of sequential BWS tasks. It also supports the adaptation of a modelling strategy in which the sequence of tasks is explicitly modelled as a scale factor.

Social care-related outcomes in Finland. Construct validity and structural characteristics of the Finnish ASCOT measure with older home care users.

The Adult Social Care Outcomes Toolkit four response-level interview schedule (ASCOT INT4) for service users was translated into Finnish. The aim of this paper was to investigate the construct validity and structural characteristics of the Finnish ASCOT. We used data from a face-to-face interview survey of older people receiving publicly funded home care services, which was conducted in 2016-2017 (n = 493), excluding missing values and proxy respondents (n = 334). Chi-square tests, adjusted residuals and analyses of variance were used to examine hypothesised associations between each attribute and a number of relevant variables regarding health and well-being, disabilities, living arrangements, social contact and support, experience of service use, and the nature of the locality and environment. Structural characteristics were explored using exploratory factor analysis and Cronbach's alpha test. The EQ-5D-3L and ASCOT were moderately correlated (r = 0.429; p < 0.001). The ASCOT attributes were statistically positively related to the overall quality of life. For other tested variables, we found a high number of significant associations with the control over daily life, occupation, social participation, and personal cleanliness attributes, but fewer significant associations with the other attributes. Cronbach's alpha was 0.697 and a single factor was extracted. This assessment provides evidence to support the construct validity of the Finnish ASCOT. The results support the introduction of the Finnish ASCOT into Finland for use in practical applications. Future research on its reliability would be useful.

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.

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.

Population-based preference weights for the Adult Social Care Outcomes Toolkit (ASCOT) for service users for Austria: Findings from a best-worst experiment.

BACKGROUND: The Adult Social Care Outcomes Toolkit (ASCOT) measures quality-of-life (QoL) outcomes of long-term care (LTC) service provision. Country-specific preference weights are required to calculate ASCOT scores. ASCOT has been translated into German, but lacks preference weights for German-speaking countries. OBJECTIVES: This paper aims to establish Austrian preference weights for the German version of the ASCOT service user measure, using best-worst scaling (BWS). METHODS: Data were collected using an online BWS-experiment from a general population sample (n=1,000) of Austrian adults. We use a scale-adjusted multinomial logit model (S-MNL) accounting for positioning effects to estimate preference weights. RESULTS: Austrians value the top attribute-levels in the ASCOT domains 'being meaningfully occupied during the day' and 'having control over daily life' most highly, whereas high needs were the least preferred in the domains 'dignity' and 'social participation'. From a methods perspective, we found significant positioning effects only for 'best' choices, with statements at the top of a list being picked more often than those further down in the list. Factors related to survey completion (self-assessed understanding of the tasks and survey completion time) were shown to have the greatest effect on individual choice consistency. DISCUSSION: The paper provides Austrian preference weights for the German version of ASCOT for service users. The weights also provide insight into how Austrians value different LTC-QoL states. Future research may investigate how values for different LTC-QoL states differ between socioeconomic groups.

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.

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.

What is the relationship between the quality of care experience and quality of life outcomes? Some evidence from long-term home care in England.

Quality of care has multiple dimensions, including safety, experience and effectiveness. Understanding the relationship between these dimensions is important for policy and practice, since there may be both synergies and trade-offs that occur when attempting to maximise them. For long-term care effectiveness is understood as care that promotes a good quality of life (QoL). Here we investigate the relationship between care experience and QoL in long-term home care. Data from a cross-sectional survey conducted in 2008/09 were analysed using fractional response regression models to explore the relationship between experience, measured through items capturing perceptions of the care delivery process, and patient-reported QoL-outcomes, measured using ASCOT, controlling for relevant individual characteristics. The analysis included 14,172 people aged 65 and over using home care services from across England. After controlling for the confounding effect of individual characteristics, a ten percentage point increase in overall process quality is found to be associated on average with a 2.13 percentage point increase in ASCOT. Interpersonal aspects of care, such as the responsiveness and caring behaviour of staff, have a stronger relationship with ASCOT than those related to the organisation of care by the provider, such as timekeeping and continuity of care, with a ten percentage point increase in the former associated on average with a 1.9 percentage point increase in ASCOT and a ten percentage point increase in the latter associated on average with a 0.3 percentage point increase in ASCOT. Perceptions of care experience, particularly those related to the interpersonal care aspects, have an important association with QoL-outcomes. Measures of the experience of interpersonal aspects of care may therefore be useful indicators of QoL-outcomes for the routine monitoring of long-term home care services. Although associated, the two dimensions are distinctive and for policymakers there is value in assessing both care experience and QoL-outcomes.

Investigating the relative value of health and social care related quality of life using a discrete choice experiment.

A key outcome in the evaluation of health technologies is the quality adjusted life year (QALY) which is often estimated using health measures such as the EuroQol instruments (EQ-5D-3L and EQ-5D-5L). The impacts of many interventions extend beyond a narrow definition of health to include non-health impacts such as social care related dimensions of quality of life (QoL). This means that there are circumstances where the QALY does not capture the full value of an intervention. In response to this, instruments with a wider measurement framework, such as the Adult Social Care Outcomes Toolkit (ASCOT), which measures social care related QoL, have been developed. Given the range of instruments available, it is important that decision-makers have tools to assess value for money comprehensively and consistently. To date, preference elicitation of different aspects of QoL combined within the same valuation procedure has not been tested. We investigate the relationship between health and social care aspects of QoL when assessed jointly by combining EQ-5D-5L and ASCOT in an online discrete choice experiment (DCE). In July 2016, 975 respondents recruited from internet panels completed 15 choice sets from an underlying design of 300. Conditional logit regression was used to estimate coefficient decrements for each attribute and examine their relative magnitude. Latent class and mixed logit modelling were used to understand preference heterogeneity. The results suggest trading across health and social care aspects indicated by coefficient estimates of differing magnitude. Dimensions with the largest disutility include four from EQ-5D-5L and one from ASCOT. There is evidence of preference heterogeneity at more severe dimension levels. We have used an established method to test the joint valuation of concepts measuring different aspects of QoL. The results have implications for the aspects of QoL that are included in QALY estimation and used in resource allocation decision-making.

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.

Are reasons for care-giving related to carers' care-related quality of life and strain? Evidence from a survey of carers in England.

In England, choice and control is promoted for service users in relation to social care services. Increased choice and control has also been promoted for unpaid carers, although this is still relatively underdeveloped. There is limited recognition of carers' choice in terms of the decision of whether to provide care. Alongside the promotion of choice and control, there has also been a focus on quality of life as an outcome of social care for care-recipients and their carers. Although it is known that carer choice (in terms of the decision of whether or not to provide care) is related to increased burden and poorer psychological health, there is limited evidence of the relationship between reasons for caring and care-related quality of life (CRQoL) and subjective strain in England. In this study, 387 carers were surveyed across 22 English local authorities between June 2013 and March 2014. Multiple regression analysis explored the relationship between carer-reported reasons for caring and CRQoL and strain, whilst controlling for individual characteristics (e.g. age). Reasons for caring were important predictors of CRQoL and strain. Where people were carers because social services suggested it or the care-recipient would not want help from anyone else, this was related to lower CRQoL. By contrast, where carers took on care-giving because they had time to care, this was significantly associated with better CRQoL. Carers reported greater strain where they provided care because it was expected of them. These findings are relevant to policy and practice because they indicate that, while social care systems rely on carers, the limiting of carers' choice of whether to provide care is related to worse outcomes. Increased awareness of this relationship would be beneficial in developing policy and practice that improves the QoL of care-recipients and also their carers.