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April 20, 2026Neurology and Therapy0 citationsOpen Access

Burden Among Caregivers of Adult Patients with Neurofibromatosis Type 1 and Plexiform Neurofibroma in the United States: A Cross-Sectional Survey Study

XYXiaoqin YangNDNicolae DoneMCMarianne Cunnington

Key Points

  • The study aims to assess the burden caregivers face while supporting adults with Neurofibromatosis Type 1 and Plexiform Neurofibroma.
  • Cross-sectional survey design
  • Sampling of caregivers for adult patients with NF1-PN in the United States
  • Assessment of work productivity and psychological distress levels
  • Caregivers experience reduced work productivity due to caregiving responsibilities
  • Common psychological distress and activity limitations are reported among caregivers
  • Despite physical health being relatively preserved, substantial psychological difficulties are observed.

Abstract

Caregiving for adults with NF1-PN is associated with substantial burden, including reduced work productivity, restricted daily activities, pain, and psychological difficulties. Despite relatively preserved physical health among caregivers, psychological distress and activity limitations are common. These findings demonstrate that NF1-PN affects not only patients but also their caregivers, highlighting the need for caregiver-focused support alongside clinical management of patients.

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Cite This Study

Yang et al. (2026) studied this question.

synapsesocial.com/papers/69e5c22d03c2939914028958https://doi.org/10.1007/s40120-026-00934-y
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