Psychosocial Care Utilization Among Patients With Duchenne Muscular Dystrophy

Patients with Duchenne muscular dystrophy (DMD) experience increased rates of behavioral and neuropsychiatric disorders. The Centers for Disease Control and Prevention recommends routine mental health screenings and referrals for psychotherapy. However, utilization of psychosocial services among patients with DMD remains understudied.

We conducted a retrospective chart review of 163 male patients followed in a pediatric DMD clinic. Clinical documentation was reviewed for mental health concerns, pharmacologic treatment, and documentation of counseling referral and engagement within the electronic medical record.

Mental health concerns were reported in 86% of patients, and 63% of these individuals experienced more than one type of mental health concern. The most common concerns included anger, aggression, or irritability (52%), attention and hyperactivity disorders (34%), and symptoms consistent with autism spectrum disorder (31%). Among patients with documented mental health concerns, 44 (32%) received pharmacologic treatment. Documentation of counseling engagement was present in 36 (26%) patients, while 104 (74%) had no documented counseling engagement. Thirty-four (24%) patients had documentation of referral without documented attendance, and 70 (50%) patients had no documented referral or documentation of counseling services within the electronic medical record.

Neuropsychiatric symptoms were frequently documented among children with DMD in this cohort, while documentation of counseling referral and engagement was variable. Given the retrospective design, these findings may reflect documentation patterns rather than definitive measures of access to psychosocial care. Prospective studies are needed to further characterize psychosocial service engagement and evaluate multidisciplinary care approaches.