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The information needs of people with MS

Open Door - May 2003 page 3

Background

The MS Trust's information service has grown significantly in recent years.

Having always responded to the questions asked by the people who contact us, we decided that a systematic investigation of information needs was necessary and selected a team from Loughborough University to carry out the research.

From the start, however, we wanted the research to do more than simply inform the work of the MS Trust. We wanted it to be relevant to all who provide information - health and social care professionals, NHS Direct, employment agencies and other MS charities.

Aims of the study

  • to determine what people with MS defined as their most important information needs
  • to determine what information was currently most difficult to find
  • to specify how and what information and knowledge should be available.

Methodology

A combination of qualitative and quantitative methods was used.

Eleven focus groups involving 103 people with MS were held in MS therapy centres around the UK. Responses from the focus groups, along with the published literature and input from the steering group, comprising both people personally affected by MS and health professionals, were used to develop a questionnaire.

The questionnaire was advertised through MS charities' newsletters, through websites and online discussion groups, and through residential and respite homes. In order to reach people who weren't members of MS groups, adverts and articles also appeared in regional newspapers. To seek the views of people very new to MS, the staff at the Walton Centre in Liverpool agreed to approach those in their newly diagnosed clinic.

One of the strengths of the research lies in its sheer size. With 2,133 people involved either in a focus group or by returning a questionnaire, 1 in 40 people with MS in the UK took part.

General findings

  • Someone with MS should be seen as a person who is likely to want to take an active role in life, and not simply as a "person-with-MS". Information should be provided that helps achieve this goal.
  • Information provision at the time of diagnosis has improved. Before 1980 fewer than 20% of respondents received any information at diagnosis compared to approximately 70% in 2000 and 2001. The consistency and range of information provision, however, still needs to be improved.
  • Negative experiences of the diagnostic process were associated with 'a lack of support', 'little information' and 'poor attitude'.
  • At diagnosis, over 50% of the respondents wanted information on symptoms and their management, drug treatments, disease course, exercise, diet and information for the family.
  • Information provision needs to be sensitive to the needs of the individual. The same information is not appropriate for all people with MS and some want none at all.
  • Information provision needs to be sensitive to symptoms such as fatigue, loss of concentration and limited mobility.
  • Information providers need to distinguish between what may be needed at diagnosis and the information needs associated with MS over time.
  • 65% of the respondents found it difficult to find out about drug treatments, research trials, balance problems, emotional changes, stress, new and unusual symptoms, and also about state benefits and entitlements.

What next?

There's little point in research if it sits on a library shelf. The real challenge now is to make the findings widely known and to use them to improve services. The research has already been presented to two meetings of MS specialist health professionals and we have sent the executive summary to all neurologists with an interest in MS, to MS charities and NHS Direct. We are now working hard to place articles in the press - both professional journals and national newspapers and magazines.

The research has demonstrated that whilst there has been significant improvement in the provision of information, there is still much to be done. The MS Trust will now work with other MS information providers to consider how best, together, we can try to meet people's needs.

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