Use of a closed set questionnaire to measure primary and secondary effects of neurofibromatosis type 2

Abstract

Objectives: To identify the greatest difficulties reported by people affected by neurofibromatosis type 2, and to determine the relationship between the primary and secondary effects of the disease.

Design: Postal questionnaire study.

Setting: Questionnaire sent to subjects' home addresses.

Participants: Eighty-seven adult patients under the care of the Manchester multidisciplinary neurofibromatosis type 2 team were invited to take part.

Main outcome measure: The response rate was 62 out of 87 (71 per cent).

Results: Respondents' answers emphasised that their greatest problem was deafness, which resulted in communication difficulties with social contacts, close partners, family and friends. Correlation coefficients indicated a relationship between general mood changes and hearing difficulties, social communication problems, balance difficulties and mobility problems. Self-confidence was significantly related only to social communication problems.

Conclusions: The use of a closed set neurofibromatosis type 2 questionnaire identified hearing problems and subsequent communication difficulties as the main problems faced by people with this condition.