Previously submitted to: Journal of Medical Internet Research (no longer under consideration since Feb 26, 2018)
Date Submitted: Dec 23, 2017
Open Peer Review Period: Dec 25, 2017 - Feb 26, 2018
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Risk knowledge of people with relapsing-remitting multiple sclerosis – results of an international survey
Background:
Adequate 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.
Objective:
We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge.
Methods:
An 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.
Results:
Of 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) 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 < .001). Variables significantly associated with higher risk knowledge were higher education (P < .001), previous experience with disease modifying drugs (P = .001), correct answer to a medical data interpretation question (P < .001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (P = .001).
Conclusions:
MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS.
ClinicalTrial:
Not applicable.
Citation
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