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A Survey of the Information Needs of People with Multiple Sclerosis

Department of Information Science, Loughborough University, Loughborough LE11 3TU, UKM.Hepworth{at}lboro.ac.uk

Janet Harrison

Department of Information Science, Loughborough University, Loughborough LE11 3TU, UK

Qualitative and quantitative methods were used to study the information needs of people with multiple sclerosis (PWMS) in the UK. Focus groups involving 103 PWMS identified significant experiences. Questionnaires were sent to 4100 PWMS (approximately 5% of the MS population) and 2030 responded. Information provision was found to have improved dramatically over the last seven years. Of those respondents who had been diagnosed in the last five years, 71 per cent thought they had received information. Of the total surveyed population, 43 per cent thought they had not received information. Information provision was found to be inconsistent, although centres noted for their interest in the patient perspective did perform somewhat better. Categories of information need were identified, and their importance and the difficulty in obtaining them were quantified. There is considerable scope for improving provision of information to people with MS.

Key Words: focus groups • information provision • multiple sclerosis • questionnaire survey

Health Informatics Journal, Vol. 10, No. 1, 49-69 (2004)
DOI: 10.1177/1460458204040668


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