Emerging therapies for some of the autoimmune diseases offer learning and trust challenges for patients. How do patients know whether "new" is safe? Who has the reassuring answers: physicians? pharmacists? Internet contacts? With the feeling that patients need to be empowered with ways to make informed decisions about the risks/benefits of initiating these new forms of treatment, AARDA has developed a patient survey in which patients are asked about how they make decisions concerning new medications. The answers received at AARDA will provide the framework to develop patient education tools to aid patients in the decision-making process.
From responses received to date, we see that patients are taking increasing responsibility for their own health. They are questioning their physicians (91 percent), but 76 percent of the respondents felt that their doctors did not give enough information about the potential risks associated with the new medications. They do read the drug inserts (84 percent); and if they have questions about the information on the inserts, 28 percent will go to the physician while 64 percent will talk with the pharmacist.
Responses show that 62 percent of patients do not take a medication based solely on their physician recommendation. Not surprisingly, the Internet is playing a major role in deciding whether to accept new treatments and medications. Patients in AARDA's survey indicate that they go to the Internet (62 percent) and then to specific health Web sites (24 percent).
How important in the decision-making is input from other patients on the same medicine regimen? Input from other patients is "very important" for 91 percent of the respondents. Additionally, respondents indicated that when prescribed a medication that has been reported to have a risk of serious side effects, 22 percent of patients would consider not taking the drug without discussing it with their physician; and nearly 30 percent reported that they might consider not taking the drug without discussing it with their physician.
Are you a patient who has been confronted with decisions regarding new medications? Please participate in our survey. Visit www.aarda.org and look for the survey link on the homepage.
