Background: Shared Decision Making (SDM) is a model of patient-provider communication stressing communication and joint participation in healthcare decisions to provide mutually agreed upon treatment. Although SDM is known to contribute to patient knowledge and satisfaction, increased adherence, and lower healthcare costs in other clinical contexts, it has not been examined in solid organ transplantation. This study assessed kidney transplant candidates’ and recipients’ preferences, experiences, and perceptions of SDM.

Methods: Semi-structured telephone surveys were conducted with adult kidney transplant candidates and recipients at our transplant center. Surveys consisted of 69 open- and closed-ended and Likert-scale questions. Open-ended responses underwent thematic analysis.

Results: Forty-one (20 candidates and 21 recipients) patients (68%) participated. The average age was 55 years; 51% were male; 62% were white, 26% were black, 15% were other; and all had at least a high school education. Most patients reported that they preferred to play either an equal (54%), greater (37%), or lesser (10%) role than their doctor in the medical decision-making process. Most patients (83%) reported being ‘somewhat’ to ‘completely’ engaged in SDM about seeking a transplant, and most (77%) were ‘very’ or ‘totally’ satisfied with the SDM process. Yet most participants (61%) did not perceive seeking a transplant as a decision. Although most reported feeling that their transplant clinicians respect their treatment preferences (74%), capable in discussing their treatment preferences with their clinicians (90%), and willing to discuss how they want to be treated (88%), fewer (58%) felt comfortable with disagreeing with their transplant clinicians’ treatment recommendations. Most participants (61%) reported wanting a decision aid to help make transplant decisions, including how quickly to complete tests for evaluation (90%), whether to get a preemptive transplant or to start dialysis (80%), whether to pursue living donation (70%), and whether to seek a marginal or increased risk donor organ (70%).

Conclusions: Our findings suggest that patients desire a prominent role in treatment decision making but they were not as involved in transplant decisions, suggesting a discrepancy between patient SDM preferences and practices. Decision aids should be developed to involve patients in SDM and making informed treatment decisions.

« Back to 2013 American Transplant Congress