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BACKGROUND: Multiple sclerosis (MS) patients are faced with complex risk-benefit profiles of disease-modifying drugs (DMDs) when making treatment decisions. For effective shared decision-making, MS patients should understand the risks and benefits of DMDs and make treatment decisions based on personal preferences. METHODS: This is an inclusive systematic review to primarily assess current understanding of MS patients for information about DMDs provided during the standard healthcare system. The secondary aim assesses MS patients' preferences for specific risks and benefits of treatments. A systematic search was conducted using PubMed, Embase and Google Scholar. A total of 22 studies were reviewed across both aims. Relevant quantitative and qualitative data was extracted by two authors. A narrative synthesis was conducted due to heterogeneity of research findings. RESULTS: There was a trend for DMD risks to be generally underestimated and DMD benefits to be generally overestimated by MS patients. Treatments that could potentially offer substantial symptom improvement, delay in disease progression, or reduction in relapses were preferred even at the expense of higher risks. CONCLUSIONS: Many patients' experience of information during the standard healthcare system does not provide satisfactory understanding of the risks and benefits of DMDs. Effective ways to communicate risk and benefit DMD information when making shared treatment decisions needs to be identified. Patient preferences of DMD risks and benefits should also be taken into account.

Original publication

DOI

10.1016/j.jns.2016.12.038

Type

Journal article

Journal

J Neurol Sci

Publication Date

15/04/2017

Volume

375

Pages

107 - 122

Keywords

Disease-modifying drugs, Multiple sclerosis, Preferences, Shared decision-making, Systematic review, Understanding, Decision Making, Disease Progression, Humans, Immunosuppressive Agents, Multiple Sclerosis, Patient Preference, Risk Assessment