Information needs of people with multiple sclerosis and the implications for information provision based on a national UK survey

Abstract

Qualitative and quantitative methods were used to study the information needs of people with multiple sclerosis (MS) in the UK. Categories of information need were identified; their importance and difficulty in obtaining them quantified. The research highlighted how there were significant differences in terms of people’s desire for the information, the topics in which they were interested and how they wanted that information. Information provision to people with MS was found to have improved dramatically over the last seven years, but was found to be inconsistent in terms of subjects covered. However, it should be borne in mind that it may be difficult for people to take on board information for a variety of reasons. Furthermore, different individual needs mean that information provision is a complex task. Many intervening factors can make it fail. The research made it clear how access to relevant information, provided in an appropriate way, could significantly improve the quality of life of the person with MS and that there is considerable scope for improving provision of information to people with MS.