It is predicted that, in coming years and in many countries, the proportion of people needing long-term care (LTC) will increase substantially. To meet the social and economic challenges of responding to this increased demand for care, health and care welfare regimes need to focus on the social care services that matter most to people, and deliver these services effectively and efficiently. In this study we want to compare the effectiveness and efficiency of non-institutional LTC (e.g. home care, day centres) for older adults and their informal carers in Austria, England and Finland.
To measure outcomes in LTC and enable consistent cross-country comparison, there is a need for a common, well-validated measure. EXCELC is using the Adult Social Care Outcomes Toolkit (ASCOT), which has both a service user and carer measure specifically designed to be suitable for use with people receiving long-term care services. The measures incorporate multiple dimensions of quality of life (QOL), including occupation, social contact, control, being fed, clean and safe, and have proven validity and reliability in England.
EXCELC analytical work streams
Translate ASCOT into Finnish and German and test the translated instruments
The first work stream is translating the ASCOT service user and carer ‘instruments’ (the questionnaires and interview schedules) into Finnish and German. The translated documents then need to be rigorously tested, to ensure that the questions mean the same thing to people in Finland and Austria as they do in England, and to ensure that the instruments are measuring care-related quality of life.
Establish utility weights for ASCOT and explore differences in preferences for ASCOT quality of life states across countries
To produce an overall QOL score we need a way to combine responses to the ASCOT questions together for each person. For this purpose we will use ‘utility weights’, which reflect the value or preference people have for different dimensions and elements of quality of life (or ASCOT–QOL states). These weights will be estimated through a preference study with a representative sample of the general population in each country.
In this work stream we will: i) generate country-specific ASCOT utility weights for the service user measure and English utility weights for the carer measure; and ii) compare differences in preferences for ASCOT quality of life states across countries.
Exploration of differences in service users’ and carers’ quality of life
This work stream compares how quality of life differs among service users (and their carers) both within and between countries. Analysis will focus on three areas: differences in the QOL of service users and carers across countries, after matching people according to their long-term conditions and other relevant characteristics; differences in outcomes for key groups of service users and carers by, for example, gender, age, disability, socio-economic indicators and ethnicity; and the relationship between outcomes for service users and their carers, in both cases controlling for a variety of other relevant factors (such as socio-demographic characteristics, care needs of the cared-for person, health conditions).
Compare care system efficiency and the cost-effectiveness of the services used between countries
This work stream explores and compares the relative costs, efficiency and cost-effectiveness of specific LTC services for service users and carers. The aim is to establish the causal effects of specific services on service users’ and carers’ QOL. We will use two methods to address this challenge. The first uses the ‘expected’ method of ASCOT to establish a counterfactual; the second estimates a production function to determine the incremental contribution that services make to QOL.
EXCELC data collection work streams
The EXCELC project has a significant fieldwork component, which is necessary to collect data in an appropriate form for the proposed comparative analysis.
The research design builds on two English studies. The first (OSCA, see Netten et al. 2012) provided data on preferences for the service user measure. The second (IIASC, see Forder et al. 2015) provided data on QOL and service use for LTC service users and their informal carers. We will collect equivalent preference data, and also equivalent service user and carer outcomes and service use data for Austria and Finland, which can be combined with the English data.
This fieldwork is managed within two further work streams:
Preference study fieldwork
The preference study comprises best-worst experiments using the ASCOT-service user measure with a sample of 500 people in the general population in both Austria and Finland, to generate country-specific utility weights (to link to work stream 2). To improve cross-country comparison of preferences, we will conduct a refresh with a sample of 100 people in England.
In addition, there is a further best-worst experiment using the ASCOT-carer measure with 500 people in England to establish preferences for the carer measure.
Service user and carer fieldwork
We will collect ASCOT–QOL data from 450 publicly-funded service users and about 225 informal carers in both Austria and Finland. We will also collect a range of data about the characteristics of service users and informal carers, such as socio-demographic characteristics, health and disability status. We intend to recruit carers via the service users so we have care-receiving dyads. These data will be used in work streams 3 and 4.
Potential impact of EXCELC
This study should strengthen the research base and help guide policy-makers and practitioners to make outcomes-focused, economically-sound decisions about LTC. Through translating ASCOT, providing country-specific utility weights for the service user measures, and English utility weights for the carer measure, it will also provide useful tools for future evaluations and research.
EXCELC is being overseen by:
- Professor Julien Forder, Personal Social Services Research Unit (PSSRU), University of Kent at Canterbury, UK
- Professor Ismo Linnosmaa, Centre for Health and Social Economics, National Institute for Health and Welfare, Helsinki, Finland
- Ms Juliette Malley, PSSRU, London School of Economics and Political Science, UK
- Dr Birgit Trukeschitz, Research Institute for Economics of Ageing, WU Vienna University of Economics and Business, Austria
and is being supported by an international advisory group.