Characterization of health concerns in people with neurofibromatosis type 1.

ABSTRACT:

Background

Neurofibromatosis 1 (NF1) is a common cancer predisposition syndrome. Affected individuals require lifelong surveillance and often suffer progressive disfigurement due to cutaneous neurofibromas. The aim of this research was to characterize health concerns and quality of life (QOL) in a population cohort.

Methods

An online survey was completed by 68 adults and 32 parents of children with NF1, and 60 controls. The survey included the Skindex-29 QOL scale, 5D-itch scale, and additional health questions.

Results

Frequency of itch was high in children (50%) and adults (69%), with most expressing interest in treatment for itch. The presence of itch and increased visibility of NF1 were predictors of poorer QoL. Many adults (53%) and parents (44%) desired access t

SUBMITTER: Fleming J 

PROVIDER: S-EPMC9834143 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature