Challenges in Transitioning Care for Duchenne Muscular Dystrophy: Diana Castro, MD


The neuromuscular specialist at the Neurology & Neuromuscular Care Center discussed the pressing need to address the transition of care from pediatric to adult healthcare systems in Duchenne muscular dystrophy. [WATCH TIME: 6 minutes]

WATCH TIME: 6 minutes

"One of the things I'm concerned [about] and [have] always wanted to bring attention to is that we do have to worry about transition of care, and we have to worry about who is going to take care of these adults [with Duchenne] as they get older."

There is an increasing number of patients with Duchenne muscular dystrophy (DMD) who are living longer into adulthood, which can lead to several different challenges in some areas of their functioning. Research shows that one of the current issues in the field is the transfer of patients with DMD from child to adult healthcare systems.1 Both pediatric and adult patients with DMD have complex healthcare needs that are associated with the progression of the disease, thus the transition should be a coordinated process that starts as early as the adolescent period.2 The goal of assisting pediatric patients and having a smooth transition into adult care is to maximize lifelong functioning.

Conducted by lead author Eliza Wasilewska, MD, PhD, a medical doctor at the Medical University of Gdansk, and colleagues, a recently published paper suggests that a multidisciplinary team should be involved in the transition process of patients with DMD.1 Authors noted that an array of specialists are needed, such as a pediatrician, general practitioner, pulmonologist, among others, because health problems in these patients can increase with older age.

Diana Castro, MD, who serves as a neuromuscular specialist at the Neurology & Neuromuscular Care Center, recently sat down with NeurologyLive® in an interview to discuss how adult neuromuscular clinicians can better prepare to care for pediatric conditions like DMD. She also spoke about the challenges that patients face when transitioning from pediatric to adult healthcare systems. Additionally, Castro talked about how healthcare institutions can prioritize comprehensive care for complex conditions like DMD, despite time and financial constraints, with support from organizations such as CureDuchenne.

1. Wasilewska E, Małgorzewicz S, Sobierajska-Rek A, et al. Transition from Childhood to Adulthood in Patients with Duchenne Muscular Dystrophy. Medicina (Kaunas). 2020;56(9):426. Published 2020 Aug 24. doi:10.3390/medicina56090426
2. Rodger S, Steffensen BF, Lochmüller H. Transition from childhood to adulthood in Duchenne muscular dystrophy (DMD). Orphanet Journal of Rare Diseases. 2012, 7(Suppl 2):A8
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