The following article is part of conference coverage from the Americas Committee for Treatment and Research in Multiple Sclerosis 2020 Forum in West Palm Beach, Florida. Neurology Advisor‘s staff will be reporting breaking news associated with research conducted by leading experts in neurology. Check back for the latest news from the ACTRIMS 2020 Forum.
WEST PALM BEACH, FL — Roughly half of patients with pediatric-onset multiple sclerosis (MS) who transition to adult clinics experience worsened clinical disability, according to study results presented at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) 2020 Forum held from February 27 to 29, 2020, in West Palm Beach, Florida.
Pediatric-onset and adult-onset MS have different disease characteristics; however, there is a lack of literature on the outcomes experienced by pediatric patients as they transition to adult centers for the treatment of MS. Therefore, the objective of this study was to describe the clinical course and engagement of care of patients with pediatric-onset MS who transitioned to an adult clinic in Toronto, Canada.
Researchers conducted a retrospective chart review study, using the St. Michael’s Multiple Sclerosis Clinic Registry to examine data from patients with pediatric-onset MS who transitioned to adult care before the age of 21 years. The investigators evaluated data on clinical characteristics of multiple sclerosis, occupational status, clear medication nonadherence, and appointment attendance. The study included 76 patients, all of whom were followed for >1 year.
Results revealed that the mean age of patients at transition was 18 years (range 14-20 years), and the majority (75%) were women. Patients had a mean total disease duration of 13 years. A total of 95% of the study cohort had relapsing-remitting MS and the mean annual relapse rate was 0.61. The median Expanded Disability Status Scale score increased from 1.0 at age 18 years to 1.5 at the last recorded clinic visit; of these patients, 47% experienced an increase in their disability score scale. At the last recorded clinic visit, 41% of patients had demonstrated clear nonadherence to disease-modifying therapy. In addition, 8% of patients had enrolled in a government-sponsored long-term disability program. In all, roughly half of patients experienced a worsening in clinical disability, with 5% demonstrating secondary progressive MS (mean age at last clinic visit 29 years; range 23-35 years).
The researchers concluded that a better understanding of the clinical course and engagement of care among patients with pediatric-onset MS may lead to improvements in clinical care, outcomes, and patient experiences.
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Sawicka KM, Jones A, Overholt S, et al. Clinical course and engagement in care of pediatric-onset multiple sclerosis patients transitioning to adult clinics. Presented at: ACTRIMS Forum 2020; February 27-29, 2020; West Palm Beach, FL. Abstract P123.