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Neurologists Begin to Build Consensus on Managing Pediatric MS and Similar Disorders

June 16, 2011

The process of building consensus on the medical management of pediatric MS and similar disorders has begun, thanks to a systematic survey conducted by the Network of Pediatric MS Centers of Excellence established by the National MS Society. The recently published results (Journal of Child Neurology 2011;26(6):675-82), by Amy T. Waldman, MD (Children’s Hospital of Philadelphia) and colleagues, identified and agreed on some specific treatment approaches, and also identified areas that need further research. The Society is supporting a data coordination and analysis center so that important research on pediatric MS can continue to bring needed answers to these and other questions.

Background: Although multiple sclerosis occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000-10,000 children (defined as up to 18 years old) in the United States have multiple sclerosis, and another 10,000-15,000 have experienced at least one symptom suggestive of MS.

Because of the critical need to better understand pediatric MS, through its recently completed Promise:2010 initiative, the National MS Society established a network of Pediatric MS Centers of Excellence. Each of the six centers offers comprehensive services through multidisciplinary teams including pediatric and adult MS experts. The centers are working together to: improve evaluation and management strategies to enhance diagnosis and care of children with MS and other related disorders; develop resources for families, health care professionals and the public; and collect data that will enable large scale research initiatives.

The Study: The authors invited 67physicians associated with the network (or others identified for their expertise in MS and similar diseases) to participate; 42 accepted. They used the Delphi technique, which involved sending out a series of questionnaires that are answered anonymously and then analyzed. Technical support for this effort was provided by the National MS Society.

Consensus – defined as agreement by more than 75% of the respondents – was reached on several items, including the following:

  • The initial evaluation of a child or teenager should involve magnetic resonance imaging scans of the brain and several blood tests (complete blood count, erythrocyte sedimentation rate, basic metabolic panel).
  • Acute attacks of the brain or spinal cord do not always require treatment; the decision depends on the symptoms of the attack, the severity, and the timing relative to the medical evaluation, among other factors.
  • Intravenous methylprednisolone is the first-line treatment of choice for acute attacks of MS in children, and similar disorders such as neuromyelitis optica.
  • Respondents would stop or change disease-modifying therapy if relapses increase or if side effects occur that interfere with daily activities.

For some items, a majority opinion was formed (50% to 75% of respondents). For example, a majority supported the use of disease-modifying therapies in children diagnosed with MS or considered at high risk for the disease.

Other areas were not agreed upon, reflecting a need for further research:

  • There was lack of agreement on the optimal choice of second-line treatments for acute attacks.
  • There was a lack of agreement on the frequency of MRI scans when monitoring pediatric patients with MS and similar disorders.
  • A consensus was not reached on whether to use disease-modifying therapies in children under the age of 5.

This consensus report does identify important areas for further study, such as what to do when first-line treatment fails in kids with MS, and how to treat very young children. The initial grants to the Pediatric Network Centers of Excellence have been extended for an additional year to continue funding the comprehensive care centers and there is funding for the next two years to support a data coordination and analysis center so the network can continue to collect data and study pediatric MS and related disorders. The network also is planning to expand its collaboration to include other sites around the country that are interested in gathering data on these diseases.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis, and there is currently no cure for MS. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. An estimated 1 million people live with MS in the United States. Most people with MS are diagnosed between the ages of 20 and 50, and it affects women three times more than men.


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