Abstract
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 < 0.001). Variables significantly associated with higher risk knowledge were higher education (p < 0.001), previous experience with disease modifying drugs (p = 0.001), correct answer to a medical data interpretation question (p < 0.001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (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.
Highlights
Good clinical practice in medical decision making is increasingly recognised as a shared process between the physician and the patient [1,2]
One prerequisite for shared decision making (SDM) is the sharing of relevant disease and treatment-related risk knowledge appraised by methods of evidence-based medicine [6,7], because risk knowledge is necessary to enable patients to get to an informed choice [8]
Inclusion criteria of participants were: (1) age 18 years, (2) a diagnosis of relapsing-remitting multiple sclerosis (MS) (RRMS), (3) being in a decision making process for a disease modifying drug (DMD) as we aimed to address those patients for whom risk knowledge is most relevant
Summary
Good clinical practice in medical decision making is increasingly recognised as a shared process between the physician and the patient [1,2]. This so called shared decision making (SDM) is defined as an interactive process between the health care provider (e.g. doctor or nurse) and the patient. Both parties have different and all-relevant information that are essential for the decision making process [3]. Adequate disease and treatment-related risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters.
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