Robert J Fox1, Amber Salter2, Joan M Alster3, Neal V Dawson4, Michael W Kattan3, Deborah Miller5, Sneha Ramesh5, Tuula Tyry6, Brian W Wells3, Gary Cutter2. 1. Mellen Center for Multiple Sclerosis, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA. Electronic address: foxr@ccf.org. 2. Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA. 3. Department of Quantitative Health Sciences, Cleveland Clinic, Cleveland, OH, USA. 4. Center for Health Care and Research Policy, Case Western Reserve University at MetroHealth Medical Center, Cleveland, OH, USA. 5. Mellen Center for Multiple Sclerosis, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA. 6. Barrows Neurological Institute, Phoenix, AZ, USA.
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.
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.
Authors: Anne Christin Rahn; Alessandra Solari; Heleen Beckerman; Richard Nicholas; David Wilkie; Christoph Heesen; Andrea Giordano Journal: Int J MS Care Date: 2020-12-28
Authors: Julia Krämer; Jan-Gerd Tenberge; Ingo Kleiter; Wolfgang Gaissmaier; Tobias Ruck; Christoph Heesen; Sven G Meuth Journal: PLoS One Date: 2017-04-13 Impact factor: 3.240