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Information Needs of People with Multiple Sclerosis |
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Funded by the MS Trust Project Head: Dr Mark Hepworth Project Team: Dr Janet Harrison, Nicole James Duration: January 2002 - October 2002 Description The purpose of the study was to conduct a comprehensive, a national, survey of people with Multiple Sclerosis and to identify exactly what information they needed in general, what information they were given at diagnosis and what information they would have liked and how they would like to receive information. Qualitative and quantitative methods were used, including focus groups involving 103 people with MS and questionnaire were returned from 2030 people with MS. Information provision was found to have improved dramatically over the last five years. However, information provision was found to be inconsistent. Categories of information need (medical and 'life' related) were identified, and their importance and the difficulty in obtaining them were quantified. The study led to improvements in information provision by the MSTrust and the MSSociety.
Publications: Hepworth, M., 'Information Needs of People with Multiple Sclerosis and the Implications for Information Provision Based on a National Survey', Aslib Proceedings, 55(5/6), 2003, pp290-303, ISSN 0001 253X. Box, V. and Hepworth, M., 'Identifying Information Needs of People with Multiple Sclerosis', Nursing Times, 99(49), 2003, pp32-36. Hepworth, M., Harrison, J. and James, N., 'Information Needs of People with Multiple Sclerosis and the Implications for Information Provision Based on a National UK Survey', Aslib Proceedings, 55(5/6), 1st September 2003, pp290-303, ISBN 0001-253X. Hepworth, M. and Harrison, J., 'A survey of the Information Needs of People with Multiple Sclerosis', Health Informatics Journal, 10(1), 1st March 2004, pp49-69, ISSN 1460-4582. Contact: Dr Mark Hepworth
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