MDA Study Highlights Lack of Psychosocial Care Services for Duchenne Muscular Dystrophy

Author(s):

Key Takeaways

Only 24.3% of DMD patients with mental health concerns accessed psychosocial services, highlighting a significant gap in care.
Anger, aggression, attention disorders, and autism-related symptoms were prevalent among DMD patients, necessitating comprehensive mental health support.
Integrating psychosocial management into DMD care is now standard practice, emphasizing the importance of multidisciplinary approaches.
Supporting caregivers is crucial for enhancing patient well-being and building resilience, as highlighted by recent research.

Despite facing mental health concerns with anger, aggression, or irritability, among others, slightly less than one-fourth of patients with DMD utilized psychosocial services such as counseling or therapy.

Antara Gupta

Findings from a single-center clinic study showcased the lack of psychosocial services among patients with Duchenne muscular dystrophy (DMD), as only one-fourth of observed patients had access to these necessary care functions. Overall, these findings highlight the importance of strengthening psychotherapy referral systems to enhance mental health service access and ensure multidisciplinary care for improved long-term outcomes in patients with DMD.¹

The data, presented at the 2025 Muscular Dystrophy Association (MDA) Clinical & Scientific conference, held March 16-19, in Dallas, Texas, comprised 163 males with the disease from a pediatric DMD clinic. Among these patients, 83.44% (n = 136) had reported mental health concerns, with several experiencing more than 1 issue. Despite these concerns, only 24.3% (33 of 136) of patients utilized psychosocial services such as counseling or therapy.

Led by Antara Gupta, an MD/MPH candidate at UT Southwestern Medical School, the most common mental health concerns identified in patients were anger, aggression, or irritability (51.5%), followed by attention and hyperactivity disorders (33.7%), and autism-related symptoms (30.7%). In addition, these patients also showed cognitive or developmental delays (25.2%), anxiety (24.5%), and depression (6.7%). Among patients with mental health concerns, 67.64% (92/136) were on psychiatric medications, 25.7% (35/136) were referred but not in care, and 50% (68/136) received neither referrals nor care.

Patients with DMD frequently face a range of mental health and psychosocial challenges due to the progressive nature of the disease. Depression and anxiety are common, often stemming from physical limitations, social isolation, and the stress of managing a chronic condition. Additionally, patients and their families often navigate significant emotional burdens related to the unpredictability of disease progression, creating a need for comprehensive mental health support as part of multidisciplinary care.

In 2010, the Centers for Disease Control and Prevention (CDC) sponsored the development of multidisciplinary management guidance for DMD, and in 2018, that guidance was updated. In the intervening years, a new emphasis was placed on studying and addressing the psychosocial issues that affect patients with DMD, driven in part by improved patient survival. Once viewed as ancillary to managing the significant medical needs of patients with DMD, it is now considered standard practice to integrate psychosocial management into the multidisciplinary management of the disease.²

In 2021, an integrative review in the International Journal of Environmental Research and Public Health addressed the psychosocial needs and therapeutic interventions for caregivers of young people with muscular dystrophy, highlighting the importance of supporting caregivers to enhance patient well-being. In the review, the study authors identified major stress points where parents need additional support and information to help them adapt during challenging periods.³

"Evidence suggests that there is benefit in challenging perspectives so that the focus is not always on deficit and burden but on positivity and opportunities,” lead author Debbie Porteous, Emeritus Professor of Nursing at Northumbria University, in Newcastle, and others, wrote. "The nature of the disease has the potential to isolate and reduce social skill development essential for transition to adulthood. As interactive situations with peers and adult role models with DMD is seen to have positive impacts on both young people and parents."

The study authors added, "It is proposed that future investment should focus on anticipating family need, targeting intervention cognisant of predictable stress points, and building resilience through social community. Parents may then be better positioned to support their child in looking forwards."

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REFERENCES
1. Gupta A, Batley K. Psychosocial Care Utilization Among Patients with Duchenne Muscular Dystrophy Patients. Presented at: 2025 MDA Clinical & Scientific conference; March 16-19. Dallas, TX. ABSTRACT P63
2. Colvin MK, Poysky J, Kinnett K, et al. Psychosocial Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics. 2018;142(supplement_2):S99-S109. doi: 10.1542/peds.2018-0333L
3. Porteous D, Davies B, English C, Atkinson J. An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne’s Muscular Dystrophy. Children (Basel). 2021;8(3):212. doi:10.3390/children8030212