Living with a rare disorder: a systematic review of the qualitative literature

ConclusionThe findings highlight the need for more research on the shared psychological and social impact of living with a rare diagnosis across conditions, in order to identify risk factors and inform clinical practice. Individuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. We performed a systematic review, including qualitative studies on adults, published between 2000 and 2016. The findings highlight the need for more research on the shared psychological and social impact of living with a rare diagnosis across conditions, in order to identify risk factors and inform clinical practice.
Source: Molecular Genetics & Genomic Medicine - Category: Genetics & Stem Cells Authors: Tags: Review Article Source Type: research