It is not only patients who can vary in their estimates of risk and benefit. Dr. Reyna described results from a survey she recently conducted based on four increasingly complex patient scenarios. Rheumatologists were asked to rate the degree of medication risk (none, low, medium, or high) for patients receiving an NSAID plus one of the following: methotrexate (MTX); MTX plus etanercept; MTX plus rituximab; or MTX plus prednisone, hydroxycholoquine, and sulfasalazine. Although the physician respondents had consensus regarding the gist of these patients’ treatment regimens, there was a great degree of variability regarding the exact probability estimates they had for medication risks. When it comes to estimating risk, human brains do not function like computers. They rely on gist, not verbatim numbers.
What most current evidence has shown, said Dr. Reyna, is that the traditional view of decision making—that patients simply needed the right tools or measures to put risk into a quantitative context—is not a correct model. “It’s helpful to know what a computer would decide, and what a well-ordered set of preferences would look like,” she said, but cognitive science now shows that patients make decisions about their health qualitatively rather than quantitatively. “The bottom line,” she said, “is that it’s the gist, not the numbers” that forms the basis for most medical decision making. Physicians can keep this in mind when discussing treatment options with patients.
The Patient and Public Health View
Published U.S. and European surveys validate that people with rheumatoid arthritis perceive disease modifying antirheumatic drugs (DMARDs) as central to the management of RA, stated Janet S. Austin, PhD, director of the Office of Communication and Public Liaison at National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), and this year’s recipient of ARHP’s Abbey Thomas Service Award, at the start of her portion of the presentation.
“And yet,” Dr. Austin added, “people with rheumatoid arthritis feel a constant tension due to strong concerns about potential long-term effects of DMARDs.” This was one of the conclusions that came out of the RA patient focus groups she conducted at NIAMS.
Because of her experience of dealing with RA for over 40 years, Dr. Austin touched not only on the public health but also the patient perspective on balancing risks and benefits of treatment. She encapsulated the crux of the session with this statement: “I decided many years ago that my quality of life was just as important today as it was tomorrow. Therefore, I take my medications, listen to my doctor, and choose not to worry about potential long-term side effects. I trust that in the future, should complications arise, that the medical and scientific discoveries of tomorrow will hold the answer.”
