The journal Neurology has published a comprehensive supplement on pediatric multiple sclerosis, the first publication of its kind, funded by the National MS Society and written by the International Pediatric MS Study Group (Neurology 2007 68: S1-S2). Nine papers in the supplement include a thorough literature review of what is known about diagnosing and managing MS in children; begin to provide sorely needed guidance for pediatricians and neurologists treating children with MS; and describe future directions for research.
The Society estimates that 8,000 to 10,000 children in the United States have MS. Few physicians have experience in diagnosing MS in children, which is complicated by the existence of similar disorders such as acute disseminated encephalomyelitis. The safety and effectiveness of MS treatments in children have not been well studied, and the psychosocial effects of the disease are poorly understood.
The National MS Society has begun to address this underserved population in recent years, establishing a nationwide network of Pediatric MS Centers of Excellence as part of its Promise:2010 targeted initiative. The Society also established the International Pediatric MS Study Group, a multidisciplinary panel that now includes pediatric and adult MS experts from around the world. The goal of the study group is to enhance our understanding of the care of children and adolescents with MS and to foster international collaborative research.
The papers compiled in the supplement cover crucial areas of pediatric MS research and care; here is a small sample:
- Proposed operational classification system to define pediatric MS and related disorders in order to create a common language among those caring for children with MS and conducting research.
- A description of the other diseases and disorders that make diagnosing MS in children a challenge, and a proposed minimal diagnostic battery to assist with “differential diagnosis” of MS in children how to distinguish MS from similar diseases. This will lead to guidance to help doctors make critical diagnosis and treatment decisions and eliminate months of uncertainty.
- MS may appear differently on magnetic resonance imaging (MRI) scans in children. One paper includes a comparison of MRI findings in adults and children with MS, and discusses advanced imaging technologies that can distinguish types of brain tissue damage, which may help to better identify children with MS and predict the course of their disease.
- Recommendations for evaluating the psychosocial aspects of MS in children, which can adversely affect self-image, mood, and cognition. The study group strongly advocates taking a proactive, multidisciplinary approach, including open discussion of the child’s and family’s concerns; interventions to address feelings of isolation with programs such as camps or pen pals; and employing strategies at school to minimize the effects of possible cognitive deficits, for example, ensuring that the child’s seat reduces distractions.
The International Pediatric MS Study Group was created and initially supported by the National MS Society (USA). Subsequent to the development of this supplement, the study group has expanded to include investigators in over 10 countries, with additional sponsorship from the MS Societies of Canada and Italy and the MS International Federation. The current steering committee for the Study Group comprises pediatric and adult MS experts from Argentina, Canada, France, Russia, Italy, Germany, Australia, and the United States. Global involvement should help facilitate the future goals of the study group, which include establishing a standardized system for collecting data on pediatric MS, a study of MS triggers, and guidelines for managing aggressive MS in children.
For more information about pediatric MS including “Young Persons with MS: A Network for Families with a Child or Teen with MS” please visit our Web site, at main.nationalmssociety.org/PediatricMS.
-- Research and Clinical Programs Department
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