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

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Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey. / 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; Heesen, Christoph; AutoMS-group.

In: PLOS ONE, Vol. 13, No. 11, 2018, p. e0208004.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Giordano, A, Liethmann, K, Köpke, S, Poettgen, J, Rahn, AC, Drulovic, J, Beckmann, Y, Sastre-Garriga, J, Galea, I, Heerings, M, Jongen, PJ, Vettorazzi, E, Solari, A, Heesen, C & AutoMS-group 2018, 'Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey', PLOS ONE, vol. 13, no. 11, pp. e0208004. https://doi.org/10.1371/journal.pone.0208004

APA

Giordano, A., Liethmann, K., Köpke, S., Poettgen, J., Rahn, A. C., Drulovic, J., Beckmann, Y., Sastre-Garriga, J., Galea, I., Heerings, M., Jongen, P. J., Vettorazzi, E., Solari, A., Heesen, C., & AutoMS-group (2018). Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey. PLOS ONE, 13(11), e0208004. https://doi.org/10.1371/journal.pone.0208004

Vancouver

Giordano A, Liethmann K, Köpke S, Poettgen J, Rahn AC, Drulovic J et al. Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey. PLOS ONE. 2018;13(11):e0208004. https://doi.org/10.1371/journal.pone.0208004

Bibtex

@article{2115217fcd4542b98cd012ed93d2807f,
title = "Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey",
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.",
keywords = "Journal Article",
author = "Andrea Giordano and Katrin Liethmann and Sascha K{\"o}pke and Jana Poettgen and Rahn, {Anne Christin} and Jelena Drulovic and Yesim Beckmann and Jaume Sastre-Garriga and Ian Galea and Marco Heerings and Jongen, {Peter Joseph} and Eik Vettorazzi and Alessandra Solari and Christoph Heesen and AutoMS-group",
year = "2018",
doi = "10.1371/journal.pone.0208004",
language = "English",
volume = "13",
pages = "e0208004",
journal = "PLOS ONE",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "11",

}

RIS

TY - JOUR

T1 - Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey

AU - Giordano, Andrea

AU - Liethmann, Katrin

AU - Köpke, Sascha

AU - Poettgen, Jana

AU - Rahn, Anne Christin

AU - Drulovic, Jelena

AU - Beckmann, Yesim

AU - Sastre-Garriga, Jaume

AU - Galea, Ian

AU - Heerings, Marco

AU - Jongen, Peter Joseph

AU - Vettorazzi, Eik

AU - Solari, Alessandra

AU - Heesen, Christoph

AU - AutoMS-group

PY - 2018

Y1 - 2018

N2 - 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.

AB - 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.

KW - Journal Article

U2 - 10.1371/journal.pone.0208004

DO - 10.1371/journal.pone.0208004

M3 - SCORING: Journal article

C2 - 30496233

VL - 13

SP - e0208004

JO - PLOS ONE

JF - PLOS ONE

SN - 1932-6203

IS - 11

ER -