Information needs of people with MS
Loughborough University
This research took place between January and October 2002. It was conducted by the Department of Information Science at Loughborough University and was commissioned and funded by the MS Trust.
The research has demonstrated there is considerable scope for improving provision of information to people with multiple sclerosis (MS) and that this would enhance their quality of life.
Executive summary
Aims
The aims of this study were to:
- comprehensively understand the information needs of people with MS;
- determine what information needs were most important to people with MS;
- determine what information was currently most difficult to find;
- recommend how data, information and knowledge should be made available to people with MS.
Methodology
Qualitative and quantitative methods were used. Eleven focus groups involving 103 people with MS of differing severity took part. These were held in England, Wales and Scotland. Discussions were structured to ensure that specific situations affecting people with MS were explored.
This data, along with the published literature and input from stakeholders and the MS Trust, was used to inform the development of a questionnaire. The questionnaire was distributed to 4,100 people with MS through: the MS Trust, MS Society, therapy and respite centres, newspapers and the internet. 2030 questionnaires (49.5%) were returned.
General Findings
Someone with MS should be seen as a person, and not only as a person with MS, who is likely to want to take an active role in life. Information should be provided that helps achieve this goal. Enabling people to participate actively in life whether in the home, workplace or elsewhere has a positive impact on their self-esteem and general well-being.
Information provision at the time of diagnosis has improved. Before 1980 less than 20% of respondents received information at diagnosis compared to approximately 70% in 2000 and 2001. The consistency of information provision, however, still needs to be improved and information provision on specific topics is still very uneven and needs to be improved.
Negative experiences of the diagnostic process (50%) were associated with ‘a lack of support’, ‘little information’, ‘poor attitude’.
At diagnosis over 50% of the respondents wanted information on managing symptoms, drug treatments, disease course, physical symptoms, exercise, diet and information for the family.
Information provision to people who have been diagnosed within the last 5 years was generally consistent with that provided to the entire surveyed population. However, at diagnosis, information provision on drugs has increased in the last five years by 13% and information about MS nurses by 19%. This reflects the introduction of disease modifying drug therapies and the increase in the number of MS nurses.
The information needs of people with MS in general have remained consistent over time.
People with MS generally welcomed information. Not all people with MS, however, wanted the same information or wanted to be informed at all. Information provision therefore needs to be sensitive to the needs of the individual.
The cognitive and physical ability of the person with MS affected their information behaviour. For example fatigue, loss of concentration and limited mobility all had a negative impact on information behaviour. Information provision therefore needs to be sensitive to the impact of these symptoms on the person with MS.
A distinction exists between information needs at diagnosis and long term information needs. 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.
40% of respondents felt that it was very important to have information on balance, walking problems, bowel and bladder disturbances, drug treatments and research.
Recommendations for information provision
1. Information should be developed for three communities
- People with MS
- The general public (including family and friends) - this would include general information about MS and living with MS and the support available.
- Service providers - this would include general information about MS, the help and information that is available.
- Service providers, including health and social care professionals and support groups, should be trained in the information needs of people with MS and how these might be satisfied.
- Health professionals involved in diagnosis need to be trained to provide information at diagnosis and in a supportive and sensitive fashion.
- Service providers need to be aware of the variability of the condition and how the nature of MS may change over time, and that informed support is required over an extended period of time.
2. Information should be provided in an appropriate way for people with MS
Information should be provided:
- in a positive manner;
- in a way that helps and motivates people to take action; that corresponds to the condition of the person with MS;
- in a way that is sensitive to the desire for information and its possible impact on the individual;
- using the most effective means of communication. This will vary depending on the nature of the information and the cognitive and physical ability of the person with MS. For example, face to face communication will be more appropriate for sensitive or complex issues. Leaflets, booklets, newsletters, email, world wide web, video conferencing and chat rooms, however, could all play a role in information provision and exchange;
- using different formats to cater to the individual needs of the person with MS. For example fatigue and problems with concentration would demand that information is provided in a succinct manner. Visual problems would also have an impact on information provision;
- enabling access to different types and sources of information, for example: professional articles, popular press, experts and other people with MS to satisfy the information seeking behaviour of the person with MS. Enabling access to other people with MS should be seen as a key role for any information provider.
3. Relevant content should be created and provided to people with MS
The following information should be provided to the person with MS (bearing in mind the need for the provider to take into account the situation of the individual).
At diagnosis people with MS generally should have access to information on:
- managing symptoms
- drug treatments
- the possible course of the condition
- physical symptoms
- information on exercise
- information for the family
- information on diet
Thereafter categories of information need to fall under two headings:
(i) information about MS and
(ii) information that helps the person with MS interact with the world around them.
(i) Information about MS
In general people with MS should be provided with information about:
- a general explanation of MS
- MS research trials
- symptoms
- prognosis
- treatment and management of symptoms
- physiotherapy
- complementary therapy
- nutritional advice
- health and fitness
- emotional changes
(ii) Information that helps the person with MS interact with the world around them
This would include information about:
- service providers (health service, social service, benefits agency, voluntary organisations)
- the services that providers give
- support groups
- aids and appliances
- facilities for the disabled
- MS and work and the issues associated with giving up work
- communicating about MS with family, friends, colleagues and the public
- leisure activities including, when necessary, provision for the disabled
Conclusion
The research has demonstrated that whilst there has been significant improvement in the provision of information to people with MS, there is considerable scope for improvement.
Department of Information Science
Loughborough University
- Mark Hepworth
- Janet Harrison
- Nicole James
See also
Box V, Hepworth M, Harrison J.
Identifying information needs of people with multiple sclerosis.
Nursing Times 2003;99(49):32-36.
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