Information needs of physicians regarding the diagnosis of rare diseases: a questionnaire-based study in Belgium.

ABSTRACT:

Background

Late and misdiagnoses of rare disease patients are common and often result in medical, physical and mental burden for the patient, and financial and emotional burden for the patient's family. Low rare disease awareness among physicians is believed to be one of the reasons for these late and misdiagnoses of rare disease patients. The aim of this study was to investigate how information and education could be tailored to the needs and preferences of physicians in Belgium to increase their rare disease awareness and support them in diagnosing patients with a rare disorder. Nine exploratory interviews with Belgian rare disease experts were performed in December 2016 to help the development of a questionnaire on information needs of physicians and their consulted information

SUBMITTER: Vandeborne L 

PROVIDER: S-EPMC6500578 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature