Self-reported access to specialty clinics and receipt of health surveillance among U.S. patients with neurofibromatosis 1: a national survey.

ABSTRACT:

Background

Neurofibromatosis 1 (NF1) is a rare, neurogenetic disorder predisposing individuals to multiple tumors and other issues requiring expert care and regular health monitoring. We sought to assess U.S. patients' access to specialized NF1 clinics and receipt of evidence-informed health surveillance.

Methods

An online survey was distributed to NF Registry participants in May 2021. Rate of NF1 clinic attendance and self-reported receipt of health surveillance amongst NF Registry participants was estimated using inverse propensity scores. Differences in these outcomes based on participant demographics were assessed using weighted logistic regression and robust linear regression, respectively.

Results

322 individuals responded (160 adults, 162 parents; 4.7% overall

SUBMITTER: Merker VL 

PROVIDER: S-EPMC12004880 | biostudies-literature | 2025 Apr

REPOSITORIES: biostudies-literature