Psychosocial Care Utilization Among Patients With Duchenne Muscular Dystrophy

Area of Science:

• Pediatric Neurology
• Child Psychiatry
• Genetics

Background:

• Duchenne muscular dystrophy (DMD) is associated with higher rates of behavioral and neuropsychiatric disorders.
• Routine mental health screenings and psychotherapy referrals are recommended for DMD patients.
• Psychosocial service utilization in DMD remains understudied.

Purpose of the Study:

• To investigate the prevalence of mental health concerns in pediatric Duchenne muscular dystrophy patients.
• To assess the documentation of pharmacologic treatment and counseling referral/engagement in this cohort.

Main Methods:

• Retrospective chart review of 163 male patients with DMD.
• Analysis of electronic medical records for mental health concerns, treatments, and counseling services.

Main Results:

• 86% of patients had documented mental health concerns, often multiple.
• Common concerns included anger/aggression (52%), ADHD (34%), and autism spectrum disorder symptoms (31%).
• Only 26% had documented counseling engagement, with 24% referred but not documented as attending.

Conclusions:

• Neuropsychiatric symptoms are common in DMD, but counseling referral and engagement documentation is variable.
• Findings may reflect documentation practices rather than actual access to care.
• Prospective studies are necessary to evaluate psychosocial service engagement and care models.