Some symptoms of Duchenne muscular dystrophy (DMD) are correlated with reduced social participation, found a new study published in Muscle & Nerve.

A team of researchers from the Netherlands set out to explore the prevalence of symptoms at various stages of the disease as well as common secondary diagnoses and to evaluate the social participation level of DMD patients and how these correlate with symptoms. They distributed a cross-sectional self-report questionnaire that included questions about functional levels, health status, and social participation scale to Dutch patients aged more than 16 years with DMD.

Eighty-four patients responded to the questionnaire. Their mean age was 22 years. Their responses showed that the most prevalent and limiting symptoms were difficulty coughing (58%), coldness of hands (57%), contractures (51%), stiffness (49%), fatigue (40%), myalgia (38%), and low speech volume (33%).

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Common secondary diagnoses included heart disease (14%), neurobehavioral problems (13%), low blood pressure (13%), and arthrosis (5%).

Social participation correlated negatively with coldness of hands, decreased intelligibility, and chewing problems.

“The prevalence of a broad spectrum of symptoms and secondary diagnoses is high in patients with DMD,” wrote Saskia L. S. Houwen-van Opstal, MD, and the coauthors of the study. “We believe that the early recognition, assessment, and treatment of these symptoms could help to alleviate problems and increase the level of social participation for patients with DMD.”

When life expectancy is extended, new symptoms can arise in patients with DMD. Being able to recognize those symptoms may facilitate their prevention or the early initiation of necessary treatments, the study team added.


Houwen-van Opstal SLS, Heutinck L, Jansen M, et al. The occurrence of symptoms in different stages of Duchenne muscular dystrophy and their impact on social participation. Muscle Nerve. Published online August 27, 2021. doi:10.1002/mus.27406