Over the years, the American Autoimmune Related Diseases Association (AARDA) learned in conversations with our members and others that they might or might not follow their doctor’s recommendations for treatments and might or might not share their decisions with their doctors. Why is that? Does it matter?
Delving into these questions, we found that, not surprisingly, many factors are involved with patients’ considerations of the risks and benefits of complying with prescribed treatment plans. Indeed, a high level of non-compliant behavior exists among patients with autoimmune diseases. What are the risks and the benefits involved in choosing to take or not take medications? What steps could AARDA take in studying the risks/benefits picture?
The first step, after the obvious one of outlining the project, was obtaining financial support for the study. This step was met when Genentech, Inc., provided an unrestricted grant to fund the project. Without such support, we would not have been able to assume the demands of carrying out the study.
The next step was gathering data. With the funding secured, we set about using several methods of collecting information not only from patients, the usual source, but also from physicians, pharmacists, and other health care providers. What factors went into the decision-making process involved in whether a patient complied with the doctor’s treatment plan? Hundreds of patients were interviewed personally, surveyed, and/or involved in focus groups. Health care professionals were interviewed primarily via telephone.
While it was clear that some of the components that determine the individual’s approach to the decision-making process varied significantly among patients, other factors were shared by a large number of patients. Frequently mentioned was a lack of trust in the prescribing physician, very likely fostered by the fact that the average autoimmune patient may see more than four doctors over a four-year period before receiving a correct diagnosis. Also, over 40 percent had been accused of being too concerned with their health or of being hypochondriacs. This lack of trust in the medical profession was mentioned often in both the focus groups and individual interviews.
The “Fear Factor” was another part of the decision-making process. Media sources present information about possible side effects of treatments but very little information about the side effects of the illnesses themselves. Thus, the assurance of the need for certain treatments, that is, getting rid of the fear factor, is left to the physician or other health care professional.
To gauge the importance of understanding the aim of treatment in preventing, controlling, or improving the condition, a video presenting three vignettes was shown to patients in the focus groups. The first vignette showed a doctor handing a patient a prescription and stating, “Here’s a prescription. I will see you in a month.” The second vignette showed a doctor handing the patient a prescription while stating, “Here’s a prescription for your rheumatoid arthritis and I will see you in a month.” The third vignette had the doctor handing a prescription to the patient while saying, “Here’s a prescription for your rheumatoid arthritis. We are trying to prevent crippling and disability of your joints.”
In analyzing the gathered data, we discovered that the number of patients indicating that they would comply went up significantly when the physician took only an extra three seconds to explain to the patient the reason for using the medication in preventing or modifying the disease. We call this “The Three-Second Compliance Factor.”
Does it fall on the patient to ask, “What do you expect this treatment to do for my condition?” Or should the doctor be prepared to tell the patient why the medication is being prescribed even before the patient asks? Either way, the question must be answered.
We in AARDA trust that the risk/benefit report produced as a result of this study will help health care professionals to increase their understanding of how patients make their decisions about following treatment plans, to have an understanding of how they could assist their patients in a positive way–and to realize that it might take only three extra seconds!
In addition to this risk/benefit report, an AARDA brochure has been developed specifically for patients and their families. It is designed to help with the decision-making process of whether or not to comply with the treatment plan, seek additional information, or perhaps search out a second option.
It is important to note that AARDA’s risk/benefit report and the brochure are not meant to take the place of physician advice or input. They are designed to be used only as tools to help with the decision-making process.
December 22, 2014