Exploring Healthcare Continuity in Pediatric‐Onset Multiple Sclerosis in the United States

ABSTRACT Objective Little is known about shifting from pediatric to adult‐focused multiple sclerosis (MS) care. This study aims to explore transition of care and follow‐up in the US pediatric‐onset MS (POMS) population. Methods Surveys were distributed to 10 sites in the US Network of Pediatric MS Centers (US NPMSC) about transition‐of‐care practices. A cohort of POMS/clinically isolated syndrome (CIS) at 12 US NPMSC sites was analyzed. The primary comparison was between < 18 and ≥ 18‐years of age. The primary outcome was 1‐ and 2‐year lapse in last follow‐up visit, measured from last recorded database visit to data lock date or, if ≥ 18 years of age, up to 1 year after a patient reached their site's typical transition age, if earlier. Secondary outcomes were baseline factors associated with follow‐up lapse. The model was adjusted for preidentified confounders. Results Compared with < 18 years, age ≥ 18 was associated with greater hazard of 1‐ and 2‐year follow‐up lapse. In POMS/CIS, the estimated hazard was 1.61 for 1‐year lapse (95% confidence interval [CI] 1.32–1.97, p < 0.001) and 1.40 for 2‐year lapse (95% CI 1.11–1.76, p = 0.004). In POMS‐only, the estimated hazard was 1.70 for 1‐year lapse (95% CI 1.33–2.18, p < 0.001) and 1.49 for 2‐year lapse (95% CI 1.11–1.99, p = 0.007). Platform injectable disease‐modifying therapy was associated with greater and intravenous with lesser hazard of lapse in follow‐up, while MS was associated with lower hazard than CIS. Conclusion Variable transition‐of‐care practices and barriers were reported by major US POMS centers. Before typical transition age, age ≥ 18 was associated with greater hazard of 1‐ and 2‐year follow‐up lapse than < 18. Developing standardized, targeted transition‐of‐care practices in POMS may be important.

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Journal
Annals of the Child Neurology Society
Published
2026-06-25
DOI
https://doi.org/10.1002/cns3.70070
Primary Topic
Adolescent and Pediatric Healthcare
Type
article
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article

Exploring Healthcare Continuity in Pediatric‐Onset Multiple Sclerosis in the United States

Kelsey E. Poisson, Aaron W. Abrams, Akash Virupakshaiah, Mark Gorman et al.
Annals of the Child Neurology Society
Adolescent and Pediatric Healthcare
article

Exploring Healthcare Continuity in Pediatric‐Onset Multiple Sclerosis in the United States

Kelsey E. Poisson, Aaron W. Abrams, Akash Virupakshaiah, Mark Gorman, Grace Gombolay, Kristen S. Fisher, Moses Rodriguez, Melissa A. Wright, Jennifer S. Graves, Kimberly O’Neill, Michael Waltz, Eva‐Chava M. Bernfeld, Timothy E. Lotze, T. Charles Casper, Nikita Shukla, Carla Francisco, Teri Schreiner, Mary Rensel, John Rose, Soe Mar, Lauren Krupp, Yolanda Wheeler, Jan‐Mendelt Tillema, Jayne Ness, Gregory Aaen, Leslie A. Benson, Claudia Gambrah‐Lyles, Emmanuelle Waubant, Bianca Weinstock‐Guttman, Tanuja Chitnis, Jonathan Race
article en

Abstract

ABSTRACT Objective Little is known about shifting from pediatric to adult‐focused multiple sclerosis (MS) care. This study aims to explore transition of care and follow‐up in the US pediatric‐onset MS (POMS) population. Methods Surveys were distributed to 10 sites in the US Network of Pediatric MS Centers (US NPMSC) about transition‐of‐care practices. A cohort of POMS/clinically isolated syndrome (CIS) at 12 US NPMSC sites was analyzed. The primary comparison was between < 18 and ≥ 18‐years of age. The primary outcome was 1‐ and 2‐year lapse in last follow‐up visit, measured from last recorded database visit to data lock date or, if ≥ 18 years of age, up to 1 year after a patient reached their site's typical transition age, if earlier. Secondary outcomes were baseline factors associated with follow‐up lapse. The model was adjusted for preidentified confounders. Results Compared with < 18 years, age ≥ 18 was associated with greater hazard of 1‐ and 2‐year follow‐up lapse. In POMS/CIS, the estimated hazard was 1.61 for 1‐year lapse (95% confidence interval [CI] 1.32–1.97, p < 0.001) and 1.40 for 2‐year lapse (95% CI 1.11–1.76, p = 0.004). In POMS‐only, the estimated hazard was 1.70 for 1‐year lapse (95% CI 1.33–2.18, p < 0.001) and 1.49 for 2‐year lapse (95% CI 1.11–1.99, p = 0.007). Platform injectable disease‐modifying therapy was associated with greater and intravenous with lesser hazard of lapse in follow‐up, while MS was associated with lower hazard than CIS. Conclusion Variable transition‐of‐care practices and barriers were reported by major US POMS centers. Before typical transition age, age ≥ 18 was associated with greater hazard of 1‐ and 2‐year follow‐up lapse than < 18. Developing standardized, targeted transition‐of‐care practices in POMS may be important.

Annals of the Child Neurology Society
Boston Children's Hospital (US), Nationwide Children's Hospital (US), Cleveland Clinic (US), Mayo Clinic (US), University of California, San Francisco (US), Washington University in St. Louis (US), University of Utah (US), Loma Linda University (US), University of Alabama at Birmingham (US), University of California San Diego (US), NYU Langone Health (US), Massachusetts General Hospital (US), Dell Children's Medical Center of Central Texas (US), Children's Healthcare of Atlanta (US), Texas Children's Hospital (US), California State University, San Bernardino (US), University at Buffalo, State University of New York (US), University of Colorado Denver (US)
Openalex Percentile: Top 5%
Adolescent and Pediatric Healthcare
DOIOpen Access PDFOpenAlex
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