Families’ Experience of Pediatric Onset Multiple Sclerosis

Abstract

This study interviewed parents to understand families’ experience with pediatric onset multiple sclerosis (POMS), which make up 2.7% to 10.5% of all MS cases. 21 sets of parents of children with a confirmed diagnosis of POMS were recruited from two pediatric MS centers. Families experienced stress from the uncertainty prior to diagnosis, anxiety over symptoms and possible progression of the disease, frustrations with the uncertain effects of disease-modifying treatments (DMTs), and difficulties with injections. Families had to cope with cognitive and physical effects of POMS at school, decisions about expectations and independence for the child, and extra demands POMS placed on the family. Most parents reported benefitting from support from physicians, the National Multiple Sclerosis Society, and the MS community. Families had benefitted from DMTs, and, despite the stresses, most had adapted successfully to the illness. Advice from interviewees to other parents and recommendations for improving family support are presented.

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Acknowledgments

We thank the many parents who contributed so substantially to this study. We also thank the National Multiple Sclerosis Society (NMSS) of the United States, which has funded the study and helped disseminate its results, and the staff at the Partners Pediatric MS Center at MGH and the Children’s Hospital of Boston who provided indispensable help in implementing the study, particularly Mark P. Gorman, Susana Camposano, and Tanuja Chitnis.

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Correspondence to Theodore P. Cross.

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On behalf of all of the authors, the corresponding author states that there is no conflict of interest.

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All procedures followed were in accordance with the ethical standards of the Institutional Review Boards of Massachusetts General Hospital, Boston Children’s Hospital and the University of Illinois at Urbana-Champaign; and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants.”

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Cross, T.P., Shanks, A.K., Duffy, L.V. et al. Families’ Experience of Pediatric Onset Multiple Sclerosis. Journ Child Adol Trauma 12, 425–435 (2019). https://doi.org/10.1007/s40653-018-0243-7

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Keywords

  • Pediatric
  • Multiple sclerosis
  • POMS
  • Parents
  • Families