NF1-PN Care

Real Patient Living with NF1-PN

Life with NF1-PN changes as patients get older​

Sometimes it felt like I was alone in caring for my condition.

– Vanessa, living with NF1-PN

NF1-PN can be especially challenging for adult patients​

For those navigating the complicated experience of entering adulthood and finding their own identity, neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) can be particularly burdensome. As children, the logistics of NF1-PN care are likely managed by their caregivers or within a neurofibromatosis (NF) clinic.1

Adult patients have fewer options for where they can receive specialized care.1,2

Adult and pediatric NF clinics in the United States*

Adapted from the Children's Tumor Foundation website.

* "Pediatric" includes pediatric-only NF clinics as well as NF clinics that are primarily pediatric-focused but can continue to see select adult patients up to a certain age.

Many patients disengage from care during the transition to adulthood

Once they have aged out of pediatric care, young adult patients have to find and coordinate appointments with multiple healthcare providers outside the NF clinic, set up their own insurance, and manage all other logistics of care. On top of dealing with their symptoms, this added responsibility may feel overwhelming.1,3-6,†
Patients most frequently drop out of care while transitioning into adulthood due to a number of reasons, including1,4,7,8,‡:
  • Financial and travel barriers
  • Difficulty coordinating appointments
  • Lack of approved treatment options
  • An unwillingness to monitor tumors that aren’t causing acute symptoms
One study showed that the awareness and responsibility of disease management in adult patients was associated with an increase in anxiety.3,†

A resource for your patients​

The NF Network has created Transitioning to Adulthood: A Guide for Individuals With NF1. It features tips to help ease the transition into adult NF care.§

How you can help​

You have the expertise and skills to help patients manage their NF1-PN rather than just live with it.

Based on a qualitative study where clinicians (n=8), NF1-PN patients aged 5 years and older (n=31), and parents of NF1-PN patients aged 5 to 17 years (n=17) were interviewed to elicit the PN-related symptoms and concerns considered most important to assess.3

Based on SpringWorks Therapeutics–sponsored market research that included 4 adult NF1-PN patients and 11 NF1-PN caregivers. Both patients and caregivers were asked to identify the emotional and experiential impact of NF1-PN on patients.7

§

SpringWorks Therapeutics is providing this resource to help patients find more information about NF1-PN, but its inclusion does not represent an endorsement or a recommendation from SpringWorks Therapeutics for any group or organization. Any organization listed is independent of SpringWorks Therapeutics.

  1. Radtke HB, Berger A, Skelton T, Goetsch Weisman A. Neurofibromatosis type 1 (NF1): addressing the transition from pediatric to adult care. Pediatric Health Med Ther. 2023;14:19-32.
  2. Gregory TA, Molina PSB, Phillips GD, Henson JW. Impact of neurofibromatosis type 1 in an adult community population. Neurooncol Pract. 2022;9(3):229-235.
  3. Lai J-S, Jensen SE, Patel ZS, Listernick R, Charrow J. Using a qualitative approach to conceptualize concerns of patients with neurofibromatosis type 1 associated plexiform neurofibromas (pNF) across the lifespan. Am J Med Genet A. 2017;173(1):79-87.
  4. Rietman AB, van Helden H, Both PH, et al. Worries and needs of adults and parents of adults with neurofibromatosis type 1. Am J Med Genet A. 2018;176(5):1150-1160.
  5. Siegel A, Lockridge R, Struemph KL, et al. Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study. J Pediatr Psychol. 2024:jsae006.
  6. Goetsch Weisman A, Haws T, Lee J, Lewis AM, Srdanovic N, Radtke HB. Transition readiness assessment in adolescents and young adults with neurofibromatosis type 1 (NF1). Compr Child Adolesc Nurs. 2023;46(3):223-239.
  7. Data on file: SpringWorks Therapeutics, Inc.
  8. Foji S, Mohammadi E, Sanagoo A, Jouybari L. How do people with neurofibromatosis type 1 (the forgotten victims) live? a grounded theory study. Health Expect. 2022;25(2):659-666.