Neurofibromatosis Type 1 (NF1): Addressing the Transition from Pediatric to Adult Care

Abstract

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

Acknowledgments

The authors would like to thank Dr. Parag Shah for his insightful comments and suggestions in the review of this manuscript.

Disclosure

Ms Heather B Radtke is an employee of the Children’s Tumor Foundation, one of the NF organizations mentioned in the manuscript. The authors report no other conflicts of interest in this work.