Siblings' life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study.

ABSTRACT:

Background

The inevitable and progressive loss of independence in Duchenne Muscular Dystrophy (DMD) patients may have an impact on their siblings' life aspirations. The present cross-sectional case-control study investigated how aspirations differed between brothers and sisters of people with DMD and a stratified comparison group of nationally representative children/adults.

Methods

A web-based survey was administered October through December 2020. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, goals, and how they define quality of life (QOL) and were coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisa

SUBMITTER: Schwartz CE 

PROVIDER: S-EPMC9463676 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature