Background: Patients with Duchenne Muscular Dystrophy (DMD) experience increased rates of behavioral and neuropsychiatric disorders, such as autism spectrum disorders (ASDs), attention-deficit hyperactivity disorder (ADHD), depression, anxiety, and obsessive-compulsive disorder (OCD). The CDC recommends routine mental health screenings and referrals to psychotherapy for the psychosocial care of patients with DMD (Birnkrant et al., 2018). However, utilization of psychosocial services among patients with DMD remains understudied.
Objective: This study aims to understand psychosocial care utilization among DMD patients and identify potential gaps in care to inform improvements in the mental health service referral system.
Methods: 163 male patients from a pediatric DMD clinic were included. We conducted a retrospective chart review to extract information about each patient’s diagnosis, pharmacological treatment, reports of mental health concerns, and diagnoses of neuropsychiatric disorders.
Results: Mental health concerns were reported in 83.44% (136/163) of patients, with many experiencing multiple issues. The most common concerns included anger, aggression, or irritability (51.5%), attention and hyperactivity disorders (33.7%), and autism-related symptoms (30.7%). Cognitive or developmental delays (25.2%), anxiety (24.5%), and depression (6.7%) were also reported. Out of the patients with mental health concerns, 67.64% (92/136) were taking psychiatric medications. However, only 24.3% (33/136) of patients utilized psychosocial services such as counseling or therapy. 25.7% (35/136) of patients were referred for psychosocial services but had not established care and 50% (68/136) were neither referred nor receiving care.
Conclusion: Despite the prevalence of mental health concerns among DMD patients, less than 25% of patients accessed psychosocial services. A larger proportion were treated with psychiatric medications, but many remained untreated. This highlights a significant gap in care, which may be attributed to a lack of resources and cultural and language barriers, among other factors. These findings underscore the need for a more fortified psychotherapy referral system to improve mental health service utilization and allow each DMD patient to receive multidisciplinary care that ultimately improves long-term outcomes.