Preferences for coordinated care for rare diseases: discrete choice experiment.

ABSTRACT:

Background

Evidence suggests that coordination of care for people affected by rare diseases is poor. In order to improve the way that care is coordinated it is necessary to understand the preferences of people affected by these conditions, and providers. The aim of this study was to examine patient, parent and carer, and health care professional preferences for different attributes of care coordination for people affected by rare diseases. We conducted a discrete choice experiment using online surveys. There were no restrictions on participants in terms of rare conditions, demographic factors other than age, or geographical location within the UK. Choice scenarios were based on the following attributes: annual cost of attending appointments; access to health records; access to clin

SUBMITTER: Morris S 

PROVIDER: S-EPMC11386106 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature