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Information provision for people with multiple sclerosis


Kopke, S., et al

Subject Keywords: Information provision, Interventions, People with MS, Informed choice, Patient-relevant outcomes
Set: Chronic Conditions
Type: Article
Region: International (other)

People with multiple sclerosis (MS) are confronted with many uncertainties in all phases of the disease. For example, the significance of a diagnosis for the future disease course remains unclear as up to one third of people will experience a benign disease course with little or even no disability progression. Uncertainty is also present for the effects and adverse effects of pharmacological and non-pharmacological therapies. People with MS want to receive accurate, recent and relevant information in order to make informed choices on all relevant disease-related decisions and also on personal life planning decisions. For this, balanced information is a prerequisite. It has been shown that disease knowledge is poor in people with MS. Therefore, people with MS should receive interventions that provide information on all aspects relevant for them.

We reviewed whether interventions aimed at providing information for people with MS increase knowledge and improve decision making and quality of life in people with MS. We looked for relevant studies in the medical literature in June 2013 and identified 10 studies that involved a total of 1314 participants. The studies evaluated a variety of approaches including the provision of written information or decision aids, educational programmes and personal information. The methodological quality of the studies varied. Topics included disease-modifying therapy, relapse management, self-care strategies, fatigue management, family planning and general health promotion. The four studies assessing the level of knowledge showed that information may successfully increase patients’ knowledge (moderate quality evidence). There were mixed results from four studies reporting on the effects on decision making (low quality evidence) and from five studies assessing quality of life (low quality evidence). As the studies and the interventions used differed markedly, and the quality of the evidence for our outcomes was not high, the results do not allow for a clear conclusion about the effectiveness of information provision interventions for people with MS.



Rights: © The Cochrane Collaboration
Suggested citation:

Kopke, S., et al. (2014) Information provision for people with multiple sclerosis [Online]. Available from: [Accessed: 19th August 2018].


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