A review of quality of life themes in Duchenne muscular dystrophy for patients and carers.

ABSTRACT: Duchenne Muscular Dystrophy (DMD) is a severe, life-limiting and incurable condition. However, studies estimating quality of life and those measuring actual quality of life in people living with DMD vary considerably. This discrepancy indicates potential difficulties with assessing quality of life using common generic quality of life instruments in this rare and unique population. This study sought to document the range of themes relevant to quality of life for people with DMD by examining the published literature and additionally to investigate the themes that are relevant to quality of life for carers and the wider family. Eligible studies for the review were primary studies of any study design that reported outcomes or themes relevant to quality of life for either people with DMD, their

SUBMITTER: Uttley L 

PROVIDER: S-EPMC6299926 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature