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

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

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Decision Making
  • Europe
  • Female
  • Health Knowledge, Attitudes, Practice / ethnology*
  • Humans
  • Informed Consent
  • Knowledge
  • Male
  • Mental Competency
  • Middle Aged
  • Multiple Sclerosis / psychology
  • Multiple Sclerosis, Relapsing-Remitting / ethnology*
  • Multiple Sclerosis, Relapsing-Remitting / psychology
  • Patient Medication Knowledge / trends
  • Risk
  • Risk Assessment
  • Serbia
  • Surveys and Questionnaires
  • Turkey

Grant support

This study was supported by grants from the Fondazione Italiana Sclerosi Multipla (FISM, www.aism.it) (grant No. 2010/R/37 to AS) and by the German Hertie Foundation (www.ghst.de/en) (grant number 12-03-2010 to CH) as part of the AutoMS project. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.