Symptom Burden in Persons with Muscular Dystrophy (MD)

Introduction: Research suggests that pain, fatigue, imbalance, memory loss and vision loss may be a significant problem in persons with muscular dystrophy. The current study examines these symptoms, and their impact on patient functioning.

Methods: 170 people with Myotonic Dystrophy Type 1 or Facioscapulohumeral Dystrophy participated in a study examining MD. Measures assessed incidence,, severity and course of five symptoms using a 0 to 10 Numerical Rating Scale. Social integration and psychological functioning were assessed using the Community Integration Questionnaire (CIQ) and the SF-36 mental component score. Descriptive and regression analyses examined the association between symptoms and functioning.

Results: The most common symptoms reported were fatigue (90.6%), imbalance (82.4%) and pain (76.5%). The most severe symptom was imbalance (50.0% reported levels >6 on the NRS), followed by fatigue (46.5% >6). All symptoms were more likely to stay the same or get worse than improve since onset.When controlling for potential confounds, these symptoms explained 17% of the variance of the mental component score, 10% of home competency, 10% of social integration, and 9% of productive activity.

Discussion: Pain, fatigue and imbalance are commonly reported symptoms in persons with MD. The severity and trajectory of these symptoms highlight a need for interventions to mitigate their impact on people with MD, and to improve productive activity and social integration. Further research is needed to examine the relationships among these symptoms and functioning and to guide clinical practices.