Patient life aspirations in the context of Duchenne Muscular Dystrophy: a mixed-methods case-control study.

ABSTRACT:

Background

Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person's life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited disorder characterized by the inevitable and progressive loss of ambulation and independence. The present cross-sectional case-control study investigated how aspirations differed between people with DMD and a stratified comparison group of nationally representative children/adults.

Methods

A web-based survey was administered October through December 2020. Recruitment was stratified by age group: 8-12, 13-17, and >  = 18, reflecting the DMD disability trajectory. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions.

SUBMITTER: Schwartz CE 

PROVIDER: S-EPMC9473464 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature