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.

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.