Pediatric Health, Medicine and Therapeutics (Feb 2023)
Neurofibromatosis Type 1 (NF1): Addressing the Transition from Pediatric to Adult Care
Abstract
Heather B Radtke,1,2,* Angela Berger,3 Tammi Skelton,4 Allison Goetsch Weisman3,5,* 1Medical College of Wisconsin, Milwaukee, WI, USA; 2Children’s Tumor Foundation, New York, NY, USA; 3Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA; 4UAB Heersink School of Medicine, Birmingham, AL, USA; 5Northwestern University, Chicago, IL, USA*These authors contributed equally to this workCorrespondence: Heather B Radtke, Email [email protected]: Health care transition, or HCT, is the process of adolescents and young adults moving from a child/family-centered model of health care to an adult/patient-centered model of health care. Healthcare providers have an essential role in this process which can be especially challenging for individuals with medical or special healthcare needs. Neurofibromatosis type 1 (NF1) is a complex multisystem disorder requiring lifelong medical surveillance, education, and psychosocial support. This review highlights the transition needs of NF1 patients and provides resources for both clinicians and families to facilitate HCT in this population. The authors propose a framework for the development of an effective NF1 transition program by using the Six Core Elements model of the Got Transition program, reviewing existing literature, and incorporating author experiences in the care and transition of NF1 patients.Keywords: adolescents, young adults, neurofibromatosis, transition, healthcare
