A survey of risk tolerance to multiple sclerosis therapies

Objective To determine tolerance to various risk scenarios associated with current multiple sclerosis (MS) therapies. Methods People with MS from the North American Research Committee on Multiple Sclerosis Registry's online cohort and the National Multiple Sclerosis Society were invited to complete a questionnaire on tolerance to real-world risks associated with a hypothetical therapy. Multiple risks levels were presented, including skin rash, infection, kidney injury, thyroid injury, liver injury, and progressive multifocal leukoencephalopathy (PML). Results Both PML and kidney injury had the lowest risk tolerance (RT) at 1:1,000,000, and thyroid and infection risks had the highest tolerance at 1:1,000. Men, younger individuals, and participants with greater disability reported a higher tolerance to all risk scenarios. Those who were currently taking an MS therapy reported higher tolerance than those not taking any therapy. Participants taking infusion therapies reported high tolerance to all risks, and those taking injectables reported a lower tolerance. Conclusion People with MS displayed a wide range of RT for MS therapies. Our study identified sex, age, disability, and current disease-modifying therapy use to be associated with RT.

[1]  B. Healy,et al.  Risk attitudes and risk perceptions in individuals with multiple sclerosis , 2016, Multiple sclerosis journal - experimental, translational and clinical.

[2]  Deborah M. Miller,et al.  Risk tolerance to MS therapies: Survey results from the NARCOMS registry. , 2015, Multiple sclerosis and related disorders.

[3]  B. Hemmer,et al.  Treatment of multiple sclerosis: current concepts and future perspectives , 2011, Journal of Neurology.

[4]  M. Duddy,et al.  Managing MS in a changing treatment landscape , 2011, Journal of Neurology.

[5]  W. Gaissmaier,et al.  Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists , 2010, Multiple sclerosis.

[6]  F. Reed Johnson,et al.  Multiple sclerosis patients—benefit-risk preferences: Serious adverse event risks versus treatment efficacy , 2009, Journal of Neurology.

[7]  S. Cepok,et al.  Immune surveillance in multiple sclerosis patients treated with natalizumab , 2006, Annals of neurology.

[8]  Ludwig Kappos,et al.  A randomized, placebo-controlled trial of natalizumab for relapsing multiple sclerosis. , 2006, The New England journal of medicine.

[9]  F. Barkhof,et al.  Evaluation of patients treated with natalizumab for progressive multifocal leukoencephalopathy. , 2006, The New England journal of medicine.

[10]  K. Tyler,et al.  Progressive multifocal leukoencephalopathy complicating treatment with natalizumab and interferon beta-1a for multiple sclerosis. , 2005, The New England journal of medicine.

[11]  S. Atlas,et al.  Progressive multifocal leukoencephalopathy in a patient treated with natalizumab. , 2005, The New England journal of medicine.

[12]  M. Kattan Comparing treatment outcomes using utility assessment for health-related quality of life. , 2003, Oncology.

[13]  E J Orav,et al.  Disease steps in multiple sclerosis: a longitudinal study comparing Disease Steps and EDSS to evaluate disease progression , 1999, Multiple sclerosis.

[14]  B Bass,et al.  The natural history of multiple sclerosis: a geographically based study. I. Clinical course and disability. , 1989, Brain : a journal of neurology.