Risk knowledge of people with relapsing-remitting multiple sclerosis – Results of an international survey

BackgroundAdequate disease and treatment-related risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters. Previous work showed that MS risk knowledge is low among pwMS and role preferences are different in Italy and Germany.ObjectiveWe investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge.MethodsAn online-survey was performed based on the Risk knowledge questionnaire for people with relapsing-remitting MS (RIKNO 2.0), the electronic Control Preference Scale (eCPS), and other patient questionnaires. Inclusion criteria of participants were: (1) age ≥18 years, (2) a diagnosis of relapsing-remitting MS (RRMS), (3) being in a decision making process for a disease modifying drug.ResultsOf 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) (mean age 38.6 years [range 18–67], 77% women, 7.8 years of disease duration) completed the RIKNO 2.0, with a mean of 41% correct answers. There were less than 50 participants in the UK and Estonia and data were not analysed. Risk knowledge differed across countries (p p p = 0.001), correct answer to a medical data interpretation question (p p = 0.001).ConclusionMS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS.