Study About Annoucement of the Diagnosis of Neurofibromatosis 1 in de Novo Forms

University Hospital, Brest31 enrolled

Overview

Neurofibromatosis type 1 (NF1) is one of the most common autosomal dominant genetic disorders. The aim of our study was to evaluate post-traumatic stress disorder (PTSD) in patients and their families following the disclosure of sporadic NF1. Diagnosis of NF1 was retained according to NIH criteria, familial forms were excluded. The French version of the Impact of Event Scale-Revised was used for the diagnosis of PTSD.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Neurofibromatosis 1 Diagnoses Disease Post Traumatic Stress Disorder

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

Inclusion Criteria: * Patient aged 18 or more, or parent of a children * Patient with a neurofibromatosis type 1 or parent of a children with a neurofibromatosis 1 in de novo form * Followed for a neurofibromatosis type 1 de novo at the dedicated consultation in the University Hospital of Brest, since april 2013 * Agree to participate Exclusion Criteria: * Patients aged of 18 years old or lower * Refusal to participate

Locations (1)

CHRU de Brest

Brest, France

Outcomes

Primary Outcomes

Study post traumatic stress disorder secondary to annoucement of diagnosis of neurofibromatosis type 1 in de novo form

Questionnaire Impact of Event Scale