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1 results

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

  • W J Neary, V F Hillier, T Flute, D Stephens, R T Ramsden, D G R Evans
  • Journal:
    The Journal of Laryngology & Otology / Volume 124 / Issue 7 / July 2010
    Published online by Cambridge University Press:
    11 March 2010, pp. 720-728
    Print publication:
    July 2010
  • 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.