Caregivers and multidisciplinary team members' perspectives on shared decision making in Duchenne muscular dystrophy: A qualitative study.

ABSTRACT:

Background

As new therapies for Duchenne muscular dystrophy (DMD) are entering the market, shared decision making (SDM) will become increasingly important. Therefore, this study aimed to understand (1) Belgian stakeholders' knowledge and perceptions of SDM in DMD treatment decision making, (2) the current state of SDM implementation in DMD in Belgium, examining the role of all involved parties, and (3) the barriers and facilitators for SDM in DMD in the Belgian context.

Methods

In this qualitative study, semi-structured interviews with the multidisciplinary team (MDT) of individuals with DMD (n = 18) and caregivers thereof (n = 11) were conducted in Belgium. Qualitative data was analyzed thematically using the framework method.

Results

Most caregivers were unfamiliar

SUBMITTER: Schoefs E 

PROVIDER: S-EPMC11895160 | biostudies-literature | 2025 Mar

REPOSITORIES: biostudies-literature