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

Published online by Cambridge University Press:  11 March 2010

W J Neary ,
V F Hillier ,
T Flute ,
D Stephens ,
R T Ramsden  and
D G R Evans
W J Neary*
Affiliation:
Child Development Centre, Warrington Primary Care Trust
V F Hillier
Affiliation:
Faculty of Medical and Human Sciences, University of Manchester, England
T Flute
Affiliation:
Child Development Centre, Warrington Primary Care Trust
D Stephens
Affiliation:
College of Medicine, Cardiff University, Wales
R T Ramsden
Affiliation:
Department of Otolaryngology Head and Neck Surgery, Manchester Royal Infirmary
D G R Evans
Affiliation:
The Department of Genetic Medicine, 6th Floor, St Mary's Hospital Manchester, England, UK
*
Address for correspondence: Dr Wanda Neary, Warrington Primary Care Trust, Community Paediatric Audiology Services, Child Development Centre, Sandy Lane, Orford, Warrington, WA2 9HY, UK. E-mail: wanda.neary@nhs.net
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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.

Keywords

Neurofibromatosis Type 2Communication DifficultiesPsychosocial Effects
Type
Main Articles
Information
The Journal of Laryngology & Otology , Volume 124 , Issue 7 , July 2010 , pp. 720 - 728
Copyright
Copyright © JLO (1984) Limited 2010

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References

1Neary, WJ, Stephens, SDG, Ramsden, RT, Evans, DGR. Psychosocial effects of Neurofibromatosis type 2 (Part 1). General effects. Audiological Medicine 2006;4:211–19CrossRefGoogle Scholar
2World Health Organization. International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization, 2001Google Scholar
3Ware, JE, Kosinski, M. SF-36 Physical and Mental Health Summary Scales: A Manual for Users of Version 1, Second Edition. Lincoln, RI: Quality Metric Incorporated, 2001Google Scholar
4Neary, WJ, Hillier, VF, Flute, T, Stephens, SDG, Ramsden, RT, Evans, DGR. The relationship between factors identified by the NF2 questionnaire and the domains of the SF-36 questionnaire. Submitted to Clinical Otolaryngology 2009. Revision submitted February 2010.Google Scholar