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

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

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.

1932-6203
Giordano, Andrea
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Liethmann, Katrin
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Köpke, Sascha
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Poettgen, Jana
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Rahn, Anne Christin
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Drulovic, Jelena
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Beckmann, Yesim
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Sastre-Garriga, Jaume
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Galea, Ian
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Heerings, Marco
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Jongen, Peter Joseph
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Vettorazzi, Eik
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Solari, Alessandra
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Heesen, Christoph
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on behalf of the AutoMS group
Giordano, Andrea
f71b88f0-f82b-4c87-9a44-5dae44f104f0
Liethmann, Katrin
fdc6a738-d77f-44d7-aa90-aaad4c15a093
Köpke, Sascha
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Poettgen, Jana
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Rahn, Anne Christin
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Drulovic, Jelena
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Beckmann, Yesim
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Sastre-Garriga, Jaume
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Galea, Ian
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Heerings, Marco
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Jongen, Peter Joseph
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Vettorazzi, Eik
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Solari, Alessandra
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Heesen, Christoph
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Giordano, Andrea, Liethmann, Katrin, Köpke, Sascha, Poettgen, Jana, Rahn, Anne Christin, Drulovic, Jelena, Beckmann, Yesim, Sastre-Garriga, Jaume, Galea, Ian, Heerings, Marco, Jongen, Peter Joseph, Vettorazzi, Eik, Solari, Alessandra and Heesen, Christoph , on behalf of the AutoMS group (2018) Risk knowledge of people with relapsing-remitting multiple sclerosis – Results of an international survey. PLoS ONE, 13 (11), [e0208004]. (doi:10.1371/journal.pone.0208004).

Record type: Article

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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Accepted/In Press date: 9 November 2018
e-pub ahead of print date: 29 November 2018
Published date: November 2018

Identifiers

Local EPrints ID: 426924
URI: http://eprints.soton.ac.uk/id/eprint/426924
ISSN: 1932-6203
PURE UUID: a4600fcb-406c-4548-95f6-d432b6cec043
ORCID for Ian Galea: ORCID iD orcid.org/0000-0002-1268-5102

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Date deposited: 18 Dec 2018 17:30
Last modified: 22 Nov 2021 02:49

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Contributors

Author: Andrea Giordano
Author: Katrin Liethmann
Author: Sascha Köpke
Author: Jana Poettgen
Author: Anne Christin Rahn
Author: Jelena Drulovic
Author: Yesim Beckmann
Author: Jaume Sastre-Garriga
Author: Ian Galea ORCID iD
Author: Marco Heerings
Author: Peter Joseph Jongen
Author: Eik Vettorazzi
Author: Alessandra Solari
Author: Christoph Heesen
Corporate Author: on behalf of the AutoMS group

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