Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey
Giordano, Andrea (University of Turin)
Liethmann, Katrin (University Medical Center Schleswig-Holstein)
Köpke, Sascha (University of Lübeck)
Poettgen, Jana (University Medical Center Eppendorf)
Rahn, Anne Christin (University of Hamburg)
Drulovic, Jelena (Clinical Center of Serbia)
Beckmann, Yesim (Ataturk Training and Research Hospital)
Sastre-Garriga, Jaume (Hospital Universitari Vall d'Hebron)
Galea, Ian (University of Southampton)
Heerings, Marco (National MS Foundation of the Netherlands)
Jongen, Peter Joseph (MS4 Research Institute)
Vettorazzi, Eik (Institut für Medizinische Biometrie und Epidemiologie, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany)
Solari, Alessandra (Fondazione IRCCS Istituto Neurologico Carlo Besta)
Heesen, Christoph (Universitätsklinikum Hamburg-Eppendorf)
Universitat Autònoma de Barcelona

Data:	2018
Resum:	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. We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge. 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. 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). 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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Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Publicat a:	PloS one, Vol. 13 (november 2018) , ISSN 1932-6203

DOI: 10.1371/journal.pone.0208004
PMID: 30496233

12 p, 712.9 KB

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