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

Heather B Radtke; Angela Berger; Tammi Skelton; Allison Goetsch Weisman

doi:10.2147/PHMT.S362679

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

Pediatric Health Med Ther. 2023 Feb 9:14:19-32. doi: 10.2147/PHMT.S362679. eCollection 2023.

Authors

Heather B Radtke^#^{1

2}, Angela Berger³, Tammi Skelton⁴, Allison Goetsch Weisman^#^{3

5}

Affiliations

¹ Medical College of Wisconsin, Milwaukee, WI, USA.
² Children's Tumor Foundation, New York, NY, USA.
³ Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
⁴ UAB Heersink School of Medicine, Birmingham, AL, USA.
⁵ Northwestern University, Chicago, IL, USA.

^# Contributed equally.

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; healthcare; neurofibromatosis; transition; young adults.

Publication types

Review