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Teams Funded by National MS Society Report on How People with MS Weigh Treatment Benefits and Risks

March 13, 2019

SUMMARY:
  • Two teams have reported new findings on how people with MS weigh the potential benefits and safety risks of therapies, and the implications of this trade-off for whether people stay on therapy (adherence). These teams were funded through a request for proposals on this topic from the National MS Society.
  • Among the findings, the researchers report that being male, younger and having greater disability is associated with greater risk tolerance, and that lower tolerance for risk is associated with poor treatment adherence.
  • The National MS Society is committed to developing tools that allow better treatment decision making and personalized medicine, including evaluating therapy benefits and risks. These studies begin to yield insight into how people with MS approach treatment decisions. Understanding these choices can help to improve treatment satisfaction and adherence.
  • Robert J. Fox, MD (Cleveland Clinic) and colleagues published findings in Neurology (Published online March 13), and Jared Bruce, PhD (University of Missouri-Kansas City) and colleagues published their findings in Psychopharmacology (2018 Nov;235(11):3303-3313).  
DETAILS
Background: Although the potential effectiveness and safety risks of MS therapies are largely known, relatively little is known about how any therapy’s benefits and risks are perceived and weighed by people with MS and their care partners and loved ones. This benefit/risk trade-off is important for clinicians, industry, and regulators to understand when considering which therapies to develop, approve for clinical use, and recommend to people with MS. The National MS Society is committed to developing tools that allow better treatment decision making and personalized medicine, including therapy benefits/risks. For these reasons, the Society released a targeted request for proposals on this topic in 2015. As a result, Health Care Delivery and Policy Contracts were awarded to Robert J. Fox, MD (Cleveland Clinic) and Jared Bruce, PhD (University of Missouri, Kansas City).
 
The Studies:
Dr. Fox: First, Dr. Fox and colleagues conducted focus groups at four sites in the U.S. to identify themes related to therapy preferences and decision making. Based on those discussions, the team composed a survey that was then completed by 3,171 people with MS recruited through the North American Research Committee on MS (NARCOMS) Registry and the National MS Society.
 
The survey asked about the level of tolerance that participants would have for real-world risks associated with a hypothetical therapy. Risk levels went from mild to severe, and included skin rash, infection, kidney injury, thyroid injury, liver injury, and PML (progressive multifocal leukoencephalopathy, a viral infection of the brain that often leads to death or severe disability).
 
Participants exhibited the highest tolerance for infection and thyroid injury and the least tolerance for kidney injury and PML. The authors note that a large proportion of the population studied was “risk averse” – depending on the complication, up to 39% were unwilling to assume any risk for the therapy’s benefit.
 
Men were more risk tolerant than women. Also, increasing age was associated with lower risk tolerance. Greater disability was associated with greater risk tolerance. Participants taking oral and infusion therapies reported a greater risk tolerance compared to those using injectables.
 
Dr. Fox (Cleveland Clinic) and colleagues published these findings in Neurology (Published online March 13).
 
Dr. Bruce: Dr. Bruce enrolled 208 people with MS, recruited through the University of Kansas Medical Center MS Clinic and the local office of the National MS Society. Participants underwent cognitive testing and were asked to complete a computer-administered series of questionnaires that measured clinical, social, and neuropsychiatric functioning, as well as “probability discounting.”
 
Probability discounting describes how quickly a person dismisses a reward as it becomes increasingly improbable (e.g., how likely would you be to pay for a lottery ticket that has a 1/10 chance vs. a 1/10,000 chance of winning? How quickly you decide not to play this lottery as the chance of winning goes down describes your probability discounting rate.) In this study, participants indicated their likelihood of taking a hypothetical medication as the probability of side effects and medication benefits varied.
 
People who discounted the potential benefits of therapy faster because of side effects were more likely to have less knowledge of MS and to exhibit worse adherence to treatment. Discounting treatments due to side effects was not associated with increased depression and anxiety, but people who discounted treatments that had higher efficacy were more likely to have decreased cognitive function.
 
Dr. Bruce (University of Missouri-Kansas City) and colleagues published these findings in Psychopharmacology (2018 Nov;235(11):3303-3313).
 
Conclusions: These studies begin to yield insights into how people with MS approach treatment decisions. Understanding these choices can help to improve treatment satisfaction and adherence.
 
Read More
Learn how to work with your healthcare team to treat MS
 

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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