@article{49870169c3544ed0bce870938f1468b2,
title = "Risk tolerance to MS therapies: Survey results from the NARCOMS registry",
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.",
keywords = "Decision making, Disease modifying therapy, Information seeking behavior, Multiple sclerosis, NARCOMS registry, Risk tolerance",
author = "Fox, {Robert J.} and Amber Salter and Alster, {Joan M.} and Dawson, {Neal V.} and Kattan, {Michael W.} and Deborah Miller and Sneha Ramesh and Tuula Tyry and Wells, {Brian W.} and Gary Cutter",
note = "Funding Information: Dr. Fox has received personal consulting fees from Allozyne, Avanir, Biogen-Idec, Novartis, Questcor, Teva and XenoPort, served on advisory committees for Biogen Idec and Novartis, and received research grant funding from Novartis; Ms. Salter has received consulting fees from Glaxo Smith-Kline Pharmaceuticals; Dr. Miller has received research support from Novartis and the National MS Society; Dr. Cutter has received consulting and speaking fees and served on the Advisory Boards of Alexion, Allozyne, Bayer, Consortium of MS Centers (grant), Klein-Buendel Incorporated, Genzyme, Medimmune, Novartis, Nuron Biotech, Receptos, Revalesio, Sanofi-Aventis, Spiniflex Pharmaceuticals, Somahlution, Teva Pharmaceuticals and Xenoport; Dr. Cutter serves on the Data and Safety Monitoring Committees for Apotek, Ascendis, Biogen-Idec, Cleveland Clinic, Glaxo Smith Klein Pharmaceuticals, Gilead Pharmaceuticals, Prolor, Ono Pharmaceuticals, Merck, Neuren, PCT Bio, Teva, Vivus, NHLBI (Protocol Review Committee), NINDS, NMSS, NICHD (OPRU oversigh committee); Dr. Cutter is the president of Pythagoras Inc, a private consulting company located in Birmingham, AL; Ms. Alster and Drs. Dawson, Kattan, Ramesh, Tyry and Wells declare no conflict of interest. Funding Information: This study was funded by Grant from the National Multiple Sclerosis Society , RG 4103-A 4/2 . No task related to the study was performed by the funding agency. Publisher Copyright: {\textcopyright} 2015 Elsevier B.V.",
year = "2015",
month = may,
day = "1",
doi = "10.1016/j.msard.2015.03.003",
language = "English (US)",
volume = "4",
pages = "241--249",
journal = "Multiple Sclerosis and Related Disorders",
issn = "2211-0348",
publisher = "Elsevier",
number = "3",
}