Sally Araki Aalfs
Dissertation Title: "Shared Decision Making in the Treatment of Endometriosis Pain"
Endometriosis is a benign gynecologic disorder that can cause potentially debilitating pain in women of reproductive age. Clinical evidence does not point to a single best treatment, and treatment options involve tradeoffs between benefits and harms that are associated with a wide range of personal values and quality of life implications. Thus, it is important that physicians provide patients with evidence-based information and that patients be able to participate in the value-laden choice of treatment for endometriosis pain. We conducted two complementary studies -- a patient study and a physician study -- to examine several aspects of the shared decision-making framework in the context of the treatment decision for endometriosis pain.
Through patient interviews (n = 70), we investigated two approaches to patient preference assessment (decision analysis and balancing technique), specifically for the purpose of fostering effective decision support. We found that both assessment techniques were valid and acceptable to patients, but they generated highly discordant treatment recommendations. Patients were evenly divided in their preference for assessment technique, with the majority preferring the second technique presented.
We also conducted a national mailed survey of gynecologists (n = 360) to examine physicians' treatment recommendations for endometriosis pain and their current practices and opinions regarding shared decision-making concepts. We found general consensus in physicians' importance ratings of key factors considered in decision making and similarities in their usual approaches to communicating with patients. However, there were substantial variations in treatment recommendations and evidence of physician-related effects. In addition, we found widespread physician endorsement of the notion of a patient decision aid for endometriosis pain.
Finally, we conducted comparative analyses of patients' and physicians' attitudes and preferences, based on the observations from the two studies. Although patients and physicians generally concurred in their attitudes toward patient-physician roles and the importance of key factors in decision making, overall treatment preferences varied considerably.
The dual-perspective results not only reinforce the need for effective decision support in the treatment decision for endometriosis pain, but also highlight key issues confronting researchers who seek to develop, test, and implement a new patient decision aid for women with endometriosis.