Physician-patient shared decision making in the treatment of primary immunodeficiency: an interview-based survey of immunologists

Background: Patient-physician shared decision making (SDM) can result in better care as well as reduced treatment costs. A better understanding of the factors predicting when physicians implement SDM during the treatment of primary immunodeficiency (PID) could provide insight for making recommendations to improve outcomes and reduce healthcare costs in PID and other long-term chronic conditions. Method: This study made use of grounded theory and was based on the interview responses of 15 immunologists in the United States. It focused on their decision making in the diagnosis and treatment of PID, how they interact with patients, and the circumstances under which they encourage SDM with patients. Results: All invited immunologists took part in the interviews and were included in the study. All but one had 10 or more years of experience in treating PID. The study found that SDM is bounded/limited by "nudging" bias, power balance considerations, and consideration of patient health literacy alignment. Immunologists also reported that they were mainly responsible for coordinating care and for allowing sufficient time for consultations. Conclusion: SDM occurs between the physician and patient throughout the treatment of PID. The study also shows the ways physicians influence SDM by guiding patients through the process. Statement of novelty: Little is known about the factors that influence SDM in the long-term management of chronic diseases. The present study investigated the extent to which immunologists experienced in the treatment of patients with PID include SDM in clinical practice. Findings such of these may be of use when formulating treatment guidelines and improving the effectiveness of long-term management of PID.