Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists.

ABSTRACT:

Introduction

The neurofibromatoses (NF) are a group of rare, genetic diseases sharing a predisposition to develop multiple benign nervous system tumors. Given the wide range of NF symptoms and medical specialties involved in NF care, we sought to evaluate the level of awareness of, and agreement with, published NF clinical guidelines among NF specialists in the United States.

Methods

An anonymous, cross-sectional, online survey was distributed to U.S.-based NF clinicians. Respondents self-reported demographics, practice characteristics, awareness of seven NF guideline publications, and level of agreement with up to 40 individual recommendations using a 5-point Likert scale. We calculated the proportion of recommendations that each clinician rated "strongly agree", and assess

SUBMITTER: Merker VL 

PROVIDER: S-EPMC8832755 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature