A recent review published in Pediatric Neurology found that the transition from pediatric to adult care in Duchenne muscular dystrophy (DMD) is often disjointed, creating anxiety for both patients and parents.
As DMD progresses in teenagers, their physical dependence on caregivers increases while their natural desire for independence reaches its peak. This mismatch can lead to frustration.
At the same time, adult care settings often offer less support than the well-coordinated pediatric teams that families are used to, leaving many patients and families feeling alone throughout the transition.
“A conflict clearly emerges between the search for greater independence and the difficulties of self-management with the disease,” noted the authors.
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While new treatments have improved the prognosis for DMD, the challenges of young adulthood have become a sort of side effect. As these teens grow older, they encounter more difficulties with education, jobs and making friends. Struggles in these key life areas often lead to feelings of social isolation and depression.
The authors suggested that developing programs that help young adults stay connected to school, work and community life could ease their transition — not just medically, but in ways that make their lives more meaningful and connected.
Caregivers face their own set of challenges. Many feel emotionally exhausted and overwhelmed as they try to balance medical responsibilities with helping their children develop life skills. The authors noted that caregivers often feel unprepared for the handoff, unsure where to find help or how to support a child’s increasing desire for independence safely.
They suggested that better communication between pediatric and adult teams, plus mental health support, could ease this burden.
“Transition programs should consider all the life areas in which patients are involved, including strategies to improve engagement in social, educational, and professional settings,” the authors noted.
Beyond teamwork at every level, several key elements could help improve the transition from pediatric to adult care. A dedicated care coordinator could ensure consistent communication and access to specialized services, helping close potential care gaps. Shared decision-making and ongoing psychological support for both teens and caregivers is also crucial. The authors also recommended the development of programs that build independence, assist with daily self-care and encourage friendships through patient groups could help young adults remain connected and confident as they navigate this new stage of life.
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