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.

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.