Building a framework for adolescent and young adult transition of care for patients with neurofibromatosis type 1 and neurofibromatosis type 2-related schwannomatosis syndromes

Neurofibromatosis type 1 (NF1) and Neurofibromatosis Type 2-Related Schwannomatosis (NF2-SWN) are the two most common genetic disorders that present with Central nervous system(CNS) tumors. Patients with NF1 and NF2-SWN typically present in childhood and are initially managed by pediatric subspecialties. As CNS tumors are the leading cause of pediatric cancer related death, managing these tumors in NF1 and NF2-SWN patients requires coordinated multidisciplinary life-long care. Adolescent and young adult (AYA) transition of care is a major opportunity for improvement in NF2 and NF2-SWN outcomes. While few small studies have focused on the NF1 population, there is minimal literature covering NF2-SWN AYA transition of care. Healthcare transition (HCT) is extremely complex for all chronic patients; however, these complexities are magnified in patients with NF1 and NF2-SWN. Having an AYA HCT model can decrease gaps in care and improve survival. We review the literature on NF1 and NF2-SWN transition of care and describe the necessary framework to establish a system to improve patient outcomes.