Overview
Pediatric-onset multiple sclerosis (POMS) occurs when MS is diagnosed before 18 years of age. Approximately 3%-5% of all individuals with MS experience disease onset before age 16 (Belman et al., 2016; Chitnis et al., 2009; Boiko et al., 2002; Duquette et al., 1987). POMS is almost exclusively diagnosed as a relapsing-remitting course, with frequency of primary progressive MS estimated at up to 7% (Abdel-Mannan, 2020). This is in stark contrast to adult-onset MS. In the adult population, primary progressive MS is much more frequent.
ECHO MS: International Pediatric
The program fosters international collaboration and increases expertise in pediatric MS and related demyelinating diseases. During each ECHO session, the expert hub panel leads participants in didactic and case-based discussions on various topics, including mood and cognition, safety and monitoring of disease-modifying therapies and wellness as a therapeutic strategy.
- Potential Risk Factors for POMS
- Pediatric MS Disease Course
- Diagnosis of POMS
- Disease-Modifying Therapies (DMTs)
- Social and Emotional Dimensions of Well-Being
- Wellness and Lifestyle Modification Strategies
Considerations for Transitioning From a Pediatric to Adult Care Team
The transition to adult care can be a long process. Encourage your POMS patients to begin thinking about how they will navigate this change as early as possible.
- Depending on where the patient receives care, an MS specialist may want to transition a child’s care to an adult provider once they reach a certain age. In such cases, it is important to develop a transition of care plan ahead of time.
- Evaluate the patient’s ability to make and keep appointments independently, without requiring family involvement. The team can then determine if additional education or resources are needed.
- Assess the patient’s ability to take and refill medications to determine if additional education or resources are needed (e.g., setting reminders on a patient’s phone).
- Discuss the importance of reporting new or worsening symptoms in a timely manner.
- Discuss the potential benefit of permitting parents/caregivers to discuss protected health information on the patient’s behalf, depending on the patient’s age and level of independence (Castillo, Kitsos et al., 2017).
- The Child Neurology Foundation has tools and resources for healthcare professionals on the topic of transitioning out of the pediatric care team.
Network of Pediatric MS Centers
The Network of Pediatric Multiple Sclerosis Centers (NPMSC) is a United States-based network that collaborates internationally. It is composed of adult and child neurologists, scientists and other research professionals with a unifying mission to uncover the causes, investigate determinants of remyelination and neuroprotection, advance therapeutics and improve outcomes in pediatric-onset MS. Through ongoing studies, the NPMSC is measuring clinical, environmental and cognitive manifestations of pediatric-onset MS and growing the largest collection of pediatric-onset MS cases in the world to further the field and improve the outcomes and quality of life of patients and families.If you are interested in collaborating with the network, please submit a collaborator interest form.
Resources for Patients, Families and Caregivers
Pediatric MS: Navigating Your Journey Program Kids Get MS Too: A Guide For Parents Of A Child Or Teen With MS Pediatric MS Alliance
Reviewed by Aaron Abrams, MD, March 2023
