People with multiple sclerosis (MS) are confronted with a number of important uncertainties concerning many aspects of the disease. These include diagnosis, prognosis, disease course, disease-modifying therapies, symptomatic therapies, and non-pharmacological interventions.While people with MS demand adequate information to be able to actively participate in medical decision making and to self manage their disease, it is shown that patients’ disease-related knowledge is poor, therefore guidelines recommend clear and concise high-quality information at all stages of the disease.
The primary objectives are to evaluate the effectiveness of information provision interventions for people with MS. Further objectives are to evaluate the components and the developmental processes of the complex interventions used, to highlight the quantity and the certainty of the research evidence available, and to set an agenda for future research.
Information provision for people with MS seems to increase disease-related knowledge, with less clear results on decision making and quality of life. The included studies reported no negative side effects of providing disease-related information to people with MS. Interpretation of study results remains challenging due to the marked heterogeneity of interventions and outcome measures. More information you can find here.