Perceived burden in dealing with different rare diseases: a qualitative focus group study.

ABSTRACT: Objectives:There are more than 6000 heterogeneous rare diseases and little is known about shared experiences of affected individuals in everyday life and healthcare. Objective of this study was to explore perceived burden of patients with rare chronic diseases and identify commonalities and differences in the experiences of patients with four heterogeneous conditions.

Design:A qualitative focus group study.

Setting:In four separate and diagnostically homogeneous focus groups, we asked patients about the perceived burden of living with their rare disease. The focus groups took place at a university medical centre in Germany.

Participants:Individuals with neurofibromatosis type 1 (n=4), primary sclerosing cholangitis (n=5), pulmonary arterial

SUBMITTER: Uhlenbusch N 

PROVIDER: S-EPMC6937088 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature