Aaron Abrams1, Skyler Peterson2, Jonathan Race2, Akash Virupakshaiah3, Kimberly O'Neill4, Claudia Gambrah-Lyles5, Kristen Fisher6, Soe Mar7, Emmanuelle Waubant8, Moses Rodriguez9, Jan-Mendelt Tillema9, Teri Schreiner10, Mary Rensel1, Tanuja Chitnis11, Lauren Krupp4, Timothy Lotze6, Theron Casper2, Yolanda Wheeler12, Jayne Ness12, Mark Gorman13, Leslie Benson13, John Rose2
1Cleveland Clinic, 2University of Utah, 3UCSF, 4NYU Langone Medical Center, 5University of Pennsylvania, 6Baylor College of Medicine, 7Washington University School of Medicine, 8USCF, 9Mayo Clinic, 10University of Colorado, 11Brigham and Women's Hospital, 12University of Alabama at Birmingham, 13Children's Hospital Boston
Objective:
To explore practice differences in the transition of patients from pediatric to adult MS care at ten major pediatric MS centers across the US.
Background:
Transitioning patients from pediatric to adult medical care is challenging. Children with rare chronic diseases like MS are particularly vulnerable to lapses in medical management. Characterizing current transition practices may help identify target areas for improving MS care in children as they enter adulthood.
Design/Methods:
A survey of transition practices was circulated to ten sites in the US Network of Pediatric MS Centers.
Results:
Response rate was 100%. 50% of sites accept new referrals up to age 18, while the remainder accept older patients. Typical transition age at half of centers is 22, while one (10%) delays until 26. Only one site (10%) initiates transition conversations at age 15, while the rest do so at an older age. 70% do not use a formal transition protocol. 40% typically transition to the same provider in an adult-based setting, while 50% transfer to adult MS colleagues within the same institution. Only 60% feel there is adequate support to assist families with the transition process. Factors each site uses to assess transition readiness differs widely. 100% are interested in a Pediatric MS Transition Readiness Guide.
Conclusions:
There was wide variability in pediatric to adult MS transition practices across the US. A large proportion of sites identified major challenges and shortcomings in current transition methodologies. Further research should help guide optimal transition from pediatric to adult MS care.