General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey.

ABSTRACT: There are almost no studies about rare diseases in general practice. This study examined care characteristics of active rare disease patients in the Belgian Network of Sentinel General Practices (SGP) and the importance of rare diseases in general practice by its caseload, general practitioner (GP)⁻patient encounter frequency and nationwide prevalence. The SGP reported data about: (i) the number of active rare disease patients in 2015; and (ii) characteristics of one to three most recently seen patients. Rare diseases were matched against Orphanet (www.orpha.net). GP encounter frequency and patients' age were compared to the total general practice population. Details from 121 active patients (median age: 44, interquartile range (IQR) 24⁻60) showed that for 36.9% the GP had been the first c

SUBMITTER: Boffin N 

PROVIDER: S-EPMC6025074 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature