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.

Understanding policy amenable risk factors: Alcohol consumption and long-term care use among people over 65 years old.

OBJECTIVES: This study aims to explore the effect of past alcohol consumption frequency on formal and informal long-term care (LTC) use in old age and explore the different channels through which it may affect LTC use. MOTIVATION: The existing literature has mainly focused on risk factors associated with a nursing home entry, but this evidence is outdated, not UK-focused, and does not look into other types of care, such as informal care. The results of this study will help in modelling the future demand for various types of care and the corresponding public spending. METHODS: We use the English Longitudinal Study of Ageing (ELSA) (2002-2017) dataset to conduct longitudinal, individual-level analysis. We explore how the previous frequency of alcohol consumption affects formal and informal care use. We focus on people aged 65 and over with no previous LTC use and run regressions with and without instrumental variables (IV) to estimate how alcohol consumption patterns in the previous wave (2 years before) affect formal and informal care use. For IV regressions, we use the polygenic score for alcohol use, available for a subsample of ELSA respondents, as an instrument while also accounting for sociodemographic characteristics, lifestyle choices, and health conditions. RESULTS: The main IV estimates suggest that frequent alcohol consumption has a weakly significant positive effect on the onset of formal LTC care use compared to none/rare drinking. This relationship diminishes and is not statistically significant when we directly control for health status. We find no statistically significant effect towards informal LTC use. These results contrast with the estimates without IV, which suggest that frequent alcohol consumption is negatively associated with informal care use and no or weakly negative association with formal care use. DISCUSSION: Our findings suggest that unobserved confounding is important when studying the relationship between alcohol consumption and LTC. We hypothesise that primarily alcohol effects LTC through its adverse effect on health. In addition, unobserved factors like preferences towards seeking care, social behaviour may be related to alcohol consumption and affect access to care. We speculate alcohol may have a damaging effect on personal relationships and could indicate the burden eventually falling on formal care. In as far as the polygenic score IV can account for unobserved preference-behaviour differences, the results (weakly) support the hypothesis that these latter processes are relevant, especially for informal care use.

The impact of formal care provision on informal care receipt for people over 75 in England.

In this study, we examine the relationship between formal care provision and informal care receipt from within the household for people over 75 years old using data from the British Household Panel Survey between 1991 and 2009. To address potential concerns about endogeneity of formal care we use a 'spatial lag' instrumental variable. We find a negative and statistically significant effect of formal care provision on informal care receipt from within the household, suggesting a substantial degree of substitutability between these two modes of care. These findings provide grounds for estimates of savings in the cost of informal care enabled by spending on formal care, which is important in light of the effects of the caregiving burden and associated responsibilities on carer's labour market participation.

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.

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.

Exploring differences between private and public prices in the English care homes market.

This work quantitatively assesses the potential reasons behind the difference in prices paid by care home residents in England. Evidence suggests that the price paid by private payers is higher than that paid for publicly supported residents, and this is often attributed to the market power wielded by local authorities as the dominant purchaser in local markets. Estimations of private prices at the local authority level are used to assess the difference in price paid between private and public prices, the fees gap, using data from 2008 to 2010. Controlling for local area and average care home characteristics, the results indicate that both care home and local authority market power play a role in the price determination of the market.

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.

Rasch analysis of the long-term conditions questionnaire (LTCQ) and development of a short-form (LTCQ-8).

BACKGROUND: The aim of the current study was to evaluate the structural validity of the 20-item long-term conditions questionnaire (LTCQ) and to explore a potential short-form version of the scale using Rasch analysis. METHODS: Data were collected through postal surveys (February 2016-January 2017) from a sample of 1,211 participants diagnosed with at least one long-term condition (LTC). Identified participants were invited through either local authorities for a social care cohort (n = 294) or primary care practices for a health care cohort (n = 917). Participants were mailed a survey, including the LTCQ, demographic questions, a comorbidities measure, and other validated outcome measures. Respondents were invited to complete a follow-up survey including the LTCQ for assessment of reproducibility. RESULTS: The main assumptions of the Rasch model from the LTCQ were fulfilled, although infit and outfit indices indicated some items showed misfit. Misfitted items, items that did not have a preceding set or showed some local dependence were removed one at a time, with the remaining candidate items to form an 8-item short version, the LTCQ-8. The Rasch model for the LTCQ-8 explained 64% variance and had a reliability estimate greater than 0.80. Several items in the LTCQ showed uniform differential item function (DIF) in relation to the number of reported LTCs, age, cohort and type of LTCs, but fewer items exhibited DIF in the LTCQ-8. Spearman's rho correlations between the LTCQ and the LTCQ-8 were strong across the total sample and various subgroups. Correlations between the LTCQ-8 and all reference measures were moderate to strong, and comparable to correlations found between the LTCQ and these measures. CONCLUSIONS: The LTCQ measures a unidimensional construct, and it is therefore acceptable to use a summed total score. The LTCQ-8 also met the assumption of unidimensionality and had comparable construct validity with the LTCQ. Additional validation is required in an independent sample.

How can patient experience scores be used to predict quality inspection ratings? A retrospective cross-sectional study of national primary care datasets in the UK.

OBJECTIVES: The relationship between patient feedback in the General Practice Patient Survey (GPPS) and Care Quality Commission (CQC) inspections of practices was investigated to understand whether there is an association between patient views and regulator ratings of quality. The specific aims were to understand whether patients' self-reported experiences of primary care can predict CQC inspection ratings of GP practices by: (i) Measuring the association between GPPS results and CQC inspection ratings of GP practices; (ii) Building a predictive model of GP practice quality ratings that use GPPS results; and (iii) Evaluating the predictive model for risk stratification. DESIGN: Retrospective analysis of routinely collected data using decision tree modelling. SETTING: Primary care: GP practices in England. PRIMARY AND SECONDARY OUTCOME MEASURES: GPPS scores and GP practice CQC inspection ratings during 2018. RESULTS: Most GP practices (72%, 974/1350) were rated as 'Good' overall by CQC. Simply assuming that all practices will be rated as 'Good' results in a correct prediction 72% of the time, and it was not possible to improve on this overall level of predictive accuracy using decision tree modelling (correct in 73% of cases). However, a set of GPPS questions were found to have value in identifying practices at elevated risk of a poor inspection rating. CONCLUSIONS: Although there were some associations between GPPS data and CQC inspection ratings, there were limitations to the use of GPPS data for predictive analysis. This is a likely result of the majority of CQC inspections of GPs resulting in a 'Good' or 'Outstanding' rating. However, some GPPS questions were found to have value in identifying practices at higher risk of an 'Inadequate' or 'Requires Improvement' rating, and this may be valuable for surveillance purposes. For example, the CQC could use key questions from the survey to target inspection planning.

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.

Effect of body mass on future long-term care use.

BACKGROUND: Obesity is a known predictor of disability and functional limitations, and, in turn, of health care use. In this study, we aim to explore whether obesity is also a significant risk factor for future long-term care use, overall and by type of care. METHODS: We use multinomial logistic regression analysis on data from the English Longitudinal Study of Ageing (ELSA) for individuals aged 65 and older between 2002 and 2011. Selection issues are tackled using the rich set of control variables, exploiting the data's longitudinal structure and accounting for loss to follow-up (including death). Control factors include health-related behaviours (physical activity, alcohol and tobacco consumption), functional limitations (related to ADLs, iADLs and mobility) and specific existing health conditions, notably diabetes, high blood pressure and cardio-vascular diseases. RESULTS: We find that obese older people are 25% (p < 0.01) more likely to receive informal or privately-paid care in the future, but this does not hold for formal care. This is an additional direct effect after controlling for a wide range of health conditions and functional limitations. We document some evidence that this effect is due to the development of new functional limitations. Sensitivity analyses suggest that the results are robust to controlling for prediabetes, subjective health, depression, or unobserved heterogeneity. CONCLUSIONS: This study provides new evidence of a positive direct effect of obesity on the future use of long-term care services. Accordingly, it adds evidence of further economic benefits to any overall evaluation of policies to promote a healthy weight in the population, particularly in the older population.

Estimating EQ-5D utilities based on the Short-Form Long Term Conditions Questionnaire (LTCQ-8).

PURPOSE: The aim of this work was to develop a mapping algorithm for estimating EuroQoL 5 Dimension (EQ-5D) utilities from responses to the Long-Term Conditions Questionnaire (LTCQ), thus increasing LTCQ's potential as a comprehensive outcome measure for evaluating integrated care initiatives. METHODS: We combined data from three studies to give a total sample of 1334 responses. In each of the three datasets, we randomly selected 75% of the sample and combined the selected random samples to generate the estimation dataset, which consisted of 1001 patients. The unselected 25% observations from each dataset were combined to generate an internal validation dataset of 333 patients. We used direct mapping models by regressing responses to the LTCQ-8 directly onto EQ-5D-5L and EQ-5D-3L utilities as well as response (or indirect) mapping to predict the response level that patients selected for each of the five EQ-5D-5L domains. Several models were proposed and compared on mean squared error and mean absolute error. RESULTS: A two-part model with OLS was the best performing based on the mean squared error (0.038) and mean absolute error (0.147) when estimating the EQ-5D-5L utilities. A multinomial response mapping model using LTCQ-8 responses was used to predict EQ-5D-5L responses levels. CONCLUSIONS: This study provides a mapping algorithm for estimating EQ-5D utilities from LTCQ responses. The results from this study can help broaden the applicability of the LTCQ by producing utility values for use in economic analyses.

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.

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.

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.

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT).

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

The impact of long-term care on primary care doctor consultations for people over 75 years.

Many countries are adopting policies to create greater coordination and integration between acute and long-term care services. This policy is predicated on the assumption that these service areas have interdependent outcomes for patients. In this paper, we study the interdependencies between the long-term (home care) services and consultations with a primary care doctor, as used by people over 75 years. Starting with a model of individual's demand for doctor consultations, given supply, we formalize the hypothesis that exogenous increases to home care supply will reduce the number of consultations where these services are technical substitutes. Furthermore, greater coordination of public service planning and use of pooled budgets could lead to better outcomes because planners can account for these externalities. We test our main hypothesis using data from the British Household Panel Study for 1991-2009. To address potential concerns about endogeneity, we use a set of instrumental variables for home care motivated by institutional features of the social care system. We find that there is a statistically significant substitution effect between home care and doctor visits, which is robust across a range of specifications. This result has implications for policies that consider increased coordination between health care and social care systems.

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.