Psychosocial effects of neurofibromatosis type 2 (Part 1): General effects

Abstract

As part of an investigation of the psychosocial aspects of neurofibromatosis 2 (NF2) an approach using a semi-structured interview/questionnaire was administered to 20 individuals with NF2 of varying severity. Previously the same individuals and their partners had completed open-ended questionnaires on such effects. The most important problem highlighted by this study and not by the open-ended approach is the loss of employment, due to communication difficulties resulting from their hearing impairment. Most patients reported excellent support from their spouses/ partners although occasionally the relationships ended in divorce. Three young people reported the ending of their close relationships because of their NF2. It was of note that support from family members was very strong, and appreciated by the patients.

• neurofibromatosis 2
• psychosocial effects
• semi-structured questioning
• employment
• relationships