Pediatric patients with multiple sclerosis (MS) often fell through the cracks when moving from child-focused to adult health care systems, facing delays in treatment, lapses in follow-up, and limited support. These challenges, outlined in a recent review published in the Journal of Pediatric Rehabilitation Medicine,1 reveal how poorly coordinated transitions disrupted care and put long-term outcomes at risk.
The review explored the clinical, psychosocial, and systemic hurdles that young people with pediatric-onset MS (onset before age 16 years) encountered as they aged out of pediatric services. | Image credit: Pixel-Shot – stock.adobe.com
The review explored the clinical, psychosocial, and systemic hurdles that young people with pediatric-onset MS (onset before age 16 years) encountered as they aged out of pediatric services.
“It should always be kept in mind that health care transition is a slow process and is not a single-time event. Cessation of pediatric care in the absence of adult health care transition leads to a gap in continued health services and can be of dreadful consequence which otherwise would have been prevented by merely enrolling, guiding, and proper training to transition to adult health care services. This review article frames the outline required for a smooth transition as well as its adherence by the youth so that their lifelong well-being can be maintained,” the authors explained.
A Rare Disease With Distinct Needs
MS was traditionally considered an adult condition; however, about 3% to 5% of MS cases begin in childhood.2 Pediatric-onset MS often presented with unique features such as delayed speech, cognitive issues, and motor impairment—factors that required specialized, coordinated care.1
Despite these distinct needs, many young patients experience unstructured transitions, leaving them vulnerable to disease progression, relapse, and emotional distress. In the United States, the lack of standardized protocols contributed to fragmented care and lost treatment opportunities.
The review cited a 2018 multicenter study in which 17 pediatric MS patients had no documented interaction with adult health care services for an entire year after aging out of pediatric care.3 Other studies revealed similar lapses in care continuity, further emphasizing the consequences of unplanned transitions.1
Adolescents also struggled with broader challenges—managing school and social life while coping with a complex, lifelong disease. Communication barriers among providers, patients, and families often compounded the problem, as did the inconsistent availability of mental health and psychosocial support.
Strategies to Improve the Transition Process
To address these issues, the authors highlighted a number of interventions:
- Structured transition programs that initiated early and prioritized personalized, developmentally appropriate care.
- Multidisciplinary care teams involving neurologists, mental health professionals, and social workers who worked collaboratively to support patients and families.
- Digital tools such as telemedicine, patient portals, and educational resources are designed to enhance engagement and promote self-management.
Implications for the US Health Care System
With MS prevalence rising—reaching a rate of 35.9 per 100,000 individuals in 20204—ensuring smooth transitions for pediatric patients had far-reaching consequences. Disruptions in care were linked to increased disease activity, higher rates of emergency room visits and hospitalizations, and long-term disability.1
In contrast, well-coordinated transitions had the potential to improve treatment adherence, reduce relapse rates, and support better quality of life—all while easing the financial burden on the health care system.
The authors concluded, “Proper care during the transition period is crucial to enhance patient adherence and deepen the understanding of the disease for both patients and their families. This will empower them to seek timely assistance when needed, reduce loss to follow-up, and ultimately improve overall quality of life.”
References
1. Transitioning from pediatric to adult multiple sclerosis care: challenges, strategies and therapy. J Pediatr Rehabil Med. 2025;18(2):158-169. doi:10.1177/18758894251329690
2. Boiko A, Vorobeychik G, Paty D, et al. Early onset multiple sclerosis: a longitudinal study. Neurology. 2002; 59(7):1006-1010. doi:10.1212/wnl.59.7.1006
3. Gray WN, Schaefer MR, Resmini-Rawlinson A, Wagoner ST. Barriers to transition from pediatric to adult care: a systematic review. J Pediatr Psychol. 2018;43(5):488-502. doi:10.1093/jpepsy/jsx142
4. Walton C, King R, Rechtman L, et al. Rising prevalence of multiple sclerosis worldwide: insights from the atlas of MS, third edition. Mult Scler. 2020;26(14):1816-1821. doi:10.1177/1352458520970841