Anita L Belman1, Lauren B Krupp2, Cody S Olsen3, John W Rose4, Greg Aaen5, Leslie Benson6, Tanuja Chitnis7, Mark Gorman6, Jennifer Graves8, Yolander Harris9, Tim Lotze10, Jayne Ness9, Moses Rodriguez11, Jan-Mendelt Tillema11, Emmanuelle Waubant12, Bianca Weinstock-Guttman13, T Charles Casper3. 1. Department of Neurology, Stony Brook University, Stony Brook, New York; NYU Langone Multiple Sclerosis Comprehensive Care Center, New York, New York; abelman@stonybrookmedicine.edu. 2. NYU Langone Multiple Sclerosis Comprehensive Care Center, New York, New York; 3. Departments of Pediatrics and. 4. Neurology, University of Utah, Salt Lake City, Utah; 5. Pediatric Multiple Sclerosis Center, Loma Linda University Children's Hospital, Loma Linda, California; 6. Department of Neurology, Boston Children's Hospital, Boston, Massachusetts; 7. Partners Multiple Sclerosis Center, Department of Neurology, Brigham and Women's Hospital, Brookline, Massachusetts; 8. Department of Neurology, University of California at San Francisco, San Francisco, California; 9. University of Alabama Center for Pediatric Onset Demyelinating Disease, Children's Hospital of Alabama, Birmingham, Alabama; 10. Blue Bird Circle Multiple Sclerosis Center, Baylor College of Medicine, Houston, Texas; 11. Mayo Clinic's Pediatric Multiple Sclerosis Center, Mayo Clinic, Rochester, Minnesota; 12. Department of Neurology, University of California at San Francisco, San Francisco, California; Department of Pediatrics, Benioff Children's Hospital, San Francisco, California; and. 13. Pediatric Multiple Sclerosis Center, Jacobs Neurologic Institute, Buffalo, New York.
Abstract
OBJECTIVES: To describe the demographic and clinical characteristics of pediatric multiple sclerosis (MS) in the United States. METHODS: This prospective observational study included children and adolescents with MS. Cases were evaluated across 9 geographically diverse sites as part of the US Network of Pediatric MS Centers. RESULTS: A total of 490 children and adolescents (324 girls, 166 boys) were enrolled; 28% developed symptoms before 12 years of age. The proportion of girls increased with age from 58% (<12 years) to 70% (≥12 years). Race and ethnicity as self-identified were: white, 67%; African American, 21%; and non-Hispanic, 70%. Most (94%) of the cases were born in the United States, and 39% had 1 or both foreign-born parents. Fifty-five percent of cases had a monofocal presentation; 31% had a prodrome (most frequently infectious), most often among those aged <12 years (P < .001). Children aged <12 years presented more commonly with encephalopathy and coordination problems (P < .001). Sensory symptoms were more frequently reported by older children (ie, those aged ≥12 years) (P < .001); 78% of girls had MS onset postmenarche. The initial Expanded Disability Status Scale score for the group was <3.0, and the annualized relapse rate was 0.647 for the first 2 years. Interval from symptom onset to diagnosis and from diagnosis to initiation of disease-modifying therapy was longer among those <12 years of age. CONCLUSIONS: Pediatric MS in the United States is characterized by racial and ethnic diversity, a high proportion of children with foreign-born parents, and differences in clinical features and timing of treatment among those <12 years of age compared with older children.
OBJECTIVES: To describe the demographic and clinical characteristics of pediatric multiple sclerosis (MS) in the United States. METHODS: This prospective observational study included children and adolescents with MS. Cases were evaluated across 9 geographically diverse sites as part of the US Network of Pediatric MS Centers. RESULTS: A total of 490 children and adolescents (324 girls, 166 boys) were enrolled; 28% developed symptoms before 12 years of age. The proportion of girls increased with age from 58% (<12 years) to 70% (≥12 years). Race and ethnicity as self-identified were: white, 67%; African American, 21%; and non-Hispanic, 70%. Most (94%) of the cases were born in the United States, and 39% had 1 or both foreign-born parents. Fifty-five percent of cases had a monofocal presentation; 31% had a prodrome (most frequently infectious), most often among those aged <12 years (P < .001). Children aged <12 years presented more commonly with encephalopathy and coordination problems (P < .001). Sensory symptoms were more frequently reported by older children (ie, those aged ≥12 years) (P < .001); 78% of girls had MS onset postmenarche. The initial Expanded Disability Status Scale score for the group was <3.0, and the annualized relapse rate was 0.647 for the first 2 years. Interval from symptom onset to diagnosis and from diagnosis to initiation of disease-modifying therapy was longer among those <12 years of age. CONCLUSIONS: Pediatric MS in the United States is characterized by racial and ethnic diversity, a high proportion of children with foreign-born parents, and differences in clinical features and timing of treatment among those <12 years of age compared with older children.
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