Impact of neurofibromatosis type 1 in an adult community population.
Publication Title
Neurooncol Pract
Document Type
Article
Publication Date
5-1-2022
Keywords
washington; swedish
Abstract
Background: Neurofibromatosis type 1 (NF1) is a common tumor predisposition syndrome with varying manifestations and severity. Adult NF1 patients often experience fragmented care, so we sought to characterize the health and demographic features of a community-based population of adults with NF1 and hypothesized that lack of a specialty clinic for adult NF1 patients correlates with unmet needs.
Methods: Retrospective case-control study of all adult cases of NF1 among 4.06 million medical records in a Pacific Northwest population. 122 case charts were reviewed to ascertain NF1 disease features, comorbidities, and severity of disease. A 1:1 control cohort was selected by matching case/control by age, sex, and ZIP code to compare demographic features and health status.
Results: Adult NF1 patients were less likely to have private insurance, be employed, and have children, but were equally likely to be married. One half of cases had disease features compromising health and well-being, and care involved 26 different specialties. Excluding neurofibromas, 43% of cases had cancer compared to 10% of controls [
Conclusions: NF1 patients may benefit from coordinated management of care in a specialty center.
Area of Special Interest
Cancer
Area of Special Interest
Neurosciences (Brain & Spine)
Specialty/Research Institute
Neurosciences
Specialty/Research Institute
Oncology
Specialty/Research Institute
Epidemiology
