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. 2018 Nov 29;13(11):e0208004.
doi: 10.1371/journal.pone.0208004. eCollection 2018.

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

Andrea Giordano  1   2 , Katrin Liethmann  3   4   5 , Sascha Köpke  6 , Jana Poettgen  3   7 , Anne Christin Rahn  3   4 , Jelena Drulovic  8 , Yesim Beckmann  9 , Jaume Sastre-Garriga  10 , Ian Galea  11 , Marco Heerings  12 , Peter Joseph Jongen  13   14 , Eik Vettorazzi  15 , Alessandra Solari  1 , Christoph Heesen  3 ; AutoMS group
Affiliations

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

Andrea Giordano et al. PLoS One. .

Abstract

Background: Adequate 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.

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. 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.

Results: Of 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).

Conclusion: MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS.

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Conflict of interest statement

I have read the journal's policy and the authors of this manuscript have the following competing interests: K. Liethmann was partly financed by a grant on adherence factors in MS (ADEPT) by Genzyme Sanofi-Aventis. J. Drulovic has received honoraria as speaker and for participation in Advisory Boards from Merck Serono, Teva, Bayer Schering, Sanofi Genzyme, and Medis. J. Sastre-Garriga has received compensation for participating on Advisory Boards, speaking honoraria and travel expenses for scientific meetings, consulting services or research support from Celgene, Novartis, Biogen, Teva, Merck, Almirall, and Genzyme. I. Galea has received funding for travel and conference attendance from Teva and research funding from Merck Serono; he has served as a scientific advisor to Evgen. A. Solari has been a board member of Merck Serono and Novartis. She has received speaker honoraria from Almirall, Excemed, Genzyme, Merck Serono, and Teva. C. Heesen has received speaker honoraria and travel grants from Biogen, Genzyme, Sanofi Aventis, Merck, Novartis and Roche. All other authors declare that they have no competing interests. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

Figures

Fig 1
Fig 1. Mean and SD level of multiple sclerosis risk knowledge (RIKNO 2.0) by country.
Possible ranges are 0–21.
Fig 2
Fig 2. Mean RIKNO 2.0 scores of the PwMS (blue columns) in comparison to the MSKQ (red columns)].
MSKQ, Multiple sclerosis knowledge questionnaire; RIKNO, Risk knowledge questionnaire in multiple sclerosis; SD, standard deviation. For easier comparability we transformed scores to a 0–100 scale.
Fig 3
Fig 3. Distribution of role preferences of people with multiple sclerosis in four countries (N = 364) assessed with the electronic Control Preference Scale (eCPS).
See this image and copyright information in PMC

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