Meeting the Unaddressed Mental Health Problems for Individuals with Duchenne Muscular Dystrophy: A Systematic Review


Meeting the unaddressed behavioral/mental health

Poster Number: 219


John Lee, PT, DPT, OCS


1. Columbia University Medical Center

Background: Duchenne Muscular Dystrophy (DMD) is a genetic, terminal neuromuscular disorder with progressive muscle degeneration. Symptoms include several secondary complications from multiple systems, and one of the most common secondary complications among affected non-ambulatory males are anxiety and depression. A systematic review can bring research evidence together by identifying the contributing factors to complications, and help inform the community what is known and which area requires further research.

Objective: To identify the domain(s) contributing to the unaddressed mental health problems in the population with Duchenne Muscular Dystrophy.

Approach: A comprehensive search of the MEDLINE (via OVID) and CINAHL (via EBSCO) medical electronic databases were conducted. The search keywords were “Duchenne Muscular Dystrophy” AND “mental health” OR “depression” OR “anxiety”. All articles investigating mental health-related inorganic secondary complications in individuals with DMD published in English were included.

Results: The search identified a total of 696 publications. Screening of title and abstract yielded 50 articles, and the full-text review resulted in 26 peer-reviewed publications. All data were analyzed in the cross-sectional method only, and categorized into comparable domains. Data synthesis was performed through annotation and extraction of keywords with qualitative analysis, to identify the most frequent and significant domain. The four main areas of mental health-related secondary complications were caregiver burnout, difficulty in transition of care, physical activity-related quality of life, and lack of continuous family education.

Conclusion: Each discovered domain requires an individual approach to develop an assessment and intervention strategies for improved clinical outcomes. Further research is required to create a comprehensive program that can be integrated into their standard medical care.