Healthcare resource allocation for rare diseases: an exploratory survey of Swiss citizens' preferences

Objective: This study explores how Swiss citizens prioritise healthcare resource allocation for rare diseases, considering variables such as disease rarity, treatment cost, patient age and treatment outcomes. Methods: We conducted an exploratory survey using visual discrete-choice vignettes embedded in scenario cards. Each card depicted a fictional patient case based on real-world disease attributes. A total of 157 unique real-world scenarios were designed by combining variables such as rarity, age group, cost and impact on quality of life. Participants were asked whether they would recommend treatment funding for each scenario. Results: A total of 375 participant responses were analysed. Our findings reveal that the probability of a positive decision to treat was influenced more by treatment effectiveness and quality-of-life outcomes than by disease rarity or cost. Conclusion: The results suggest that while high treatment costs do pose challenges, they are often secondary to the perceived benefits of treatment; Swiss citizens prioritise treatment effectiveness and quality-of-life improvements over rarity or treatment cost when considering funding decisions.