Caregivers and multidisciplinary team members’ perspectives on shared decision making in Duchenne muscular dystrophy: A qualitative study
Schoefs, Elise Lerinckx, Evelyn Waele, Liesbeth De Geuens, Sam Pelicaen, Conny Meeus, Luc Simoens, Steven Audenhove, Chantal Van Mommen, Mieke
Schoefs, Elise
Lerinckx, Evelyn
Waele, Liesbeth De
Geuens, Sam
Pelicaen, Conny
Meeus, Luc
Simoens, Steven
Audenhove, Chantal Van
Mommen, Mieke
Publication Type
Journal article with impact factor
Editor
Supervisor
Publication Year
2025
Journal
Orphanet Journal of Rare Diseases
Book
Publication Volume
20
Publication Issue
1
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Publication End page
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Abstract
BackgroundAs 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.MethodsIn 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.ResultsMost caregivers were unfamiliar with the term SDM, while MDT members were aware of it but struggled to define it consistent with existing literature. Despite acknowledging some drawbacks, participants valued SDM as an important process in DMD care, noting its presence in current practice. However, both MDT members and caregivers sometimes questioned the necessity of SDM due to limited treatment options available. Consequently, decision making predominantly relied on (child) neurologists sharing information and seeking consent from caregivers and individuals with DMD for a proposed treatment. Participants highlighted the important role of the MDT, with each professional contributing its unique expertise to SDM. To reduce existing barriers and enhance the SDM process, participants called for clear and transparent information regarding different treatment options, including clinical trials, and detailed information on how treatments might affect patients’ daily life.ConclusionThis study identified an increased need for easily understandable information, particularly regarding DMD care in general, but also about clinical trials covering new and emerging therapies. Developing specific evidence-based tools could support stakeholders’ understanding of this information, thereby enhancing implementation of the SDM process in DMD care. Further, as the treatment landscape of DMD evolves, it will become increasingly important for patients to be supported by an MDT, as they can provide information on clinical trials (e.g., study coordinators), emotional support (e.g., psychologists, nurses), and decisional guidance (e.g., neurologist).
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Keywords
31 Biological Sciences, 32 Biomedical and Clinical Sciences, 3202 Clinical Sciences, 3105 Genetics, Duchenne/ Becker Muscular Dystrophy, Clinical Research, Rare Diseases, Muscular Dystrophy, Pediatric Research Initiative, Behavioral and Social Science, Caregiving Research, Clinical Trials and Supportive Activities, Orphan Drug, 7.3 Management and decision making, 7.1 Individual care needs, 3 Good Health and Well Being, Humans, Muscular Dystrophy, Duchenne, Caregivers, Decision Making, Shared, Qualitative Research, Male, Female, Adult, Decision Making, Child, Belgium