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

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.