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

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.