A Representative Survey of M.S. Patients on Attitudes toward the Benefits and Risks of Drug Therapy

Background: Although M.S. patients face significant trade-offs between risks and benefits of drug therapy, little is known of their attitudes toward these risks and benefits. Methods: A representative telephone survey of 200 patients with relapsing remitting M.S. Results: Respondents suffered substantial disability, most of them requiring a wheel chair or support for walking any significant distance, and over half suffering relapses in the past year. All were on drug therapy; half had switched drugs; 1/3 had switched at least twice.Most patients had seen their neurologist at least 4 times in the previous two years and said they and their physician were equally involved in drug decisions. About 55% said they would definitely or probably use a drug that significantly reduces frequency of relapse or progression in disability even if the drug involves a 1-in-1,000 chance of a fatal side-effect.Willingness to tolerate risk bore little relationship with disability levels. A substantial majority agreed that the FDA should tightly control drugs with safety concerns, but a larger majority agreed that once the FDA has provided a warning, patients should be free to decide with their physician whether to use such drugs. Virtually all said they were willing to visit their neurologist more often in order to use risky drugs. Conclusions: M.S. patients are accustomed to playing a large role in their own drug therapy but do so in close collaboration with their physicians.After the FDA has reviewed drug safety and provided reasonable warnings, many M.S. patients wish to be free to choose to incur a 1-in-1,000 (or even greater) risk of a fatal side-effect in return for significantly more effective drugs, and are willing to work with the physicians in doing so.