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A survey of risk tolerance to multiple sclerosis therapies

Robert J Fox1, Carol Cosenza2, Lauren Cripps2

  • 1From the Mellen Center for Multiple Sclerosis, (R.J.F., S.N.), Department of Bioethics (P.F.), and Department of Bioethics (M.M.), Cleveland Clinic, OH; Center for Survey Research (C.C., L.C.), University of Massachusetts, Boston; Division of Biostatistics (A.S.), Washington University School of Medicine, St. Louis, MO; Dignity Health (T.T.), St. Joseph's Hospital and Medical Center, Phoenix, AZ; and Department of Biostatistics (S.S.C.), School of Public Health, University of Alabama, Birmingham. foxr@ccf.org.

Neurology
|March 15, 2019
PubMed
Abstract

Insights

People with multiple sclerosis (MS) show varied risk tolerance for MS therapies. Factors like sex, age, disability, and current treatment influence tolerance to potential side effects, including rare but serious risks like PML.

Area of Science:

  • Neurology
  • Immunology
  • Pharmacology

Background:

  • Multiple sclerosis (MS) is a chronic autoimmune disease affecting the central nervous system.
  • Current disease-modifying therapies (DMTs) for MS carry various risk profiles.
  • Understanding patient tolerance to these risks is crucial for treatment adherence and shared decision-making.

Purpose of the Study:

  • To assess the risk tolerance (RT) of individuals with MS towards different adverse events associated with hypothetical MS therapies.
  • To identify demographic and clinical factors influencing RT in the MS population.

Main Methods:

  • A questionnaire-based survey was administered to individuals with MS from the North American Research Committee on Multiple Sclerosis Registry and the National Multiple Sclerosis Society.
  • Participants rated their tolerance to a range of potential risks, including skin rash, infection, kidney injury, thyroid injury, liver injury, and progressive multifocal leukoencephalopathy (PML).

Main Results:

  • Progressive multifocal leukoencephalopathy (PML) and kidney injury exhibited the lowest risk tolerance (1:1,000,000).
  • Thyroid injury and infection risks had the highest tolerance (1:1,000).
  • Higher RT was reported by men, younger individuals, those with greater disability, and current MS therapy users. Infusion therapy users reported higher tolerance than injectable therapy users.

Conclusions:

  • Individuals with MS demonstrate a broad spectrum of risk tolerance for MS therapies.
  • Sex, age, disability level, and current DMT use are significant factors associated with risk tolerance in MS patients.

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