Which ASCOT profiles are considered worse than dead according to the Dutch population
Karen van Leeuwen | Vrije Universiteit Amsterdam
Objective: The Adult Social Care Outcomes Toolkit self-completion version (ASCOT SCT4) can be used as a preference-based measure. Country specific preference-based value sets are currently developed. There are a range of techniques available to estimate preference-based values. Dutch preferences for the ASCOT will be elicited using Best-Worst Scaling (BWS). Additionally, the Time Trade Off (TTO) technique can be used to rescale the BWS values to a 0-1 scale making it feasible to calculate social-care Quality Adjusted Life Years (sc-QALYs). TTO values are obtained by asking respondents to trade off quality and length of life. However, it may be unusual for respondents to consider poor quality of life situations as worse than death. Qualitative studies among Dutch respondents show that apart from severe medical conditions there are situations in which persons perceive life is no longer worth living. This may for example be when someone feels disconnected with life, reflected in feelings of loneliness, not mattering, fear of independence and self-estrangement. Some of these situations may be reflected in ASCOT profiles with the lowest levels of quality of life. The aim of this study was to examine how Dutch members of the general population value poor ASCOT profiles relative to death, in order to explore the feasibility of a TTO study with ASCOT profiles.
Data and methods: In this pilot study we used the Visual Analogue Scale (VAS) technique to explore Dutch preferences for ASCOT profiles relative to death. Participants were members of the Dutch population, aged 18 years and over. They were asked to rate 25 ASCOT profiles (with a low score based on English preference-based values) and the state of ‘being death’ on a VAS scale, ranging from worst imaginable quality of life to best imaginable quality of life. Two sets of profiles were randomly distributed to the respondents, resulting in values for 40 ASCOT profiles. Mean scores of the ASCOT profiles were calculated by transforming the scale based on the value of ‘being death’. Multilevel regression analysis was used to examine differences in preferences between groups based on gender, age, education, marital status, self-perceived health and self-perceived quality of life.
Results: We hypothesize that several ASCOT profiles will be considered worse than death by the Dutch general population, and that persons with a higher age, lower self-perceived health and quality of life are less likely to consider ASCOT profiles worse than death. Results will be available in June/July 2016.
Implications: The results of this pilot study will show whether there are ASCOT profiles that are considered worse than death by the Dutch general population. This would contribute to a justification for the use of sc-QALYs and the use of TTO technique to estimate preference based values for the ASCOT SCT-4 in the Netherlands.