Risk tolerance to MS therapies: Survey results from the NARCOMS registry

Robert J. Fox, Amber Salter, Joan M. Alster, Neal V. Dawson, Michael W. Kattan, Deborah Miller, Sneha Ramesh, Tuula Tyry, Brian W. Wells, Gary Cutter

Research output: Contribution to journalArticle

13 Scopus citations

Abstract

Background There is little information about risk acceptance of multiple sclerosis (MS) patients to various MS therapies. Objective To determine MS patients' tolerance to risky therapies and identify associated characteristics. Methods MS patients from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry's online cohort were invited to complete questionnaires on decision making and risk tolerance (RT) to two therapeutic scenarios: a theoretical cure for MS [CureMS], with permanent reversal of all MS symptoms but a risk of immediate painless death; and natalizumab [NAT], a real-life scenario with benefits and risks as defined by Phase III trial results. Results The median RT for both scenarios was 1:10,000; 15-23% of respondents were not willing to take any risk for their MS therapy. Participants with greater disability or not taking any MS therapy showed a greater RT, while females and those caring for dependents had a lower RT. Females and older age were predictors of lower RT, while increasing disability and greater blunting attitude with respect to information seeking behavior were predictors of higher RT. Conclusion MS patients displayed a wide range of RT for MS therapies. Our study identified gender, age, disability and information seeking behavior to be associated with RT.

Original languageEnglish
Pages (from-to)241-249
Number of pages9
JournalMultiple Sclerosis and Related Disorders
Volume4
Issue number3
DOIs
StatePublished - May 1 2015
Externally publishedYes

Keywords

  • Decision making
  • Disease modifying therapy
  • Information seeking behavior
  • Multiple sclerosis
  • NARCOMS registry
  • Risk tolerance

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    Fox, R. J., Salter, A., Alster, J. M., Dawson, N. V., Kattan, M. W., Miller, D., Ramesh, S., Tyry, T., Wells, B. W., & Cutter, G. (2015). Risk tolerance to MS therapies: Survey results from the NARCOMS registry. Multiple Sclerosis and Related Disorders, 4(3), 241-249. https://doi.org/10.1016/j.msard.2015.03.003