Barriers to Completing the Transplant Evaluation Process: A Mixed- Methods Study

ABSTRACT

Purpose: Little is known about patient-reported factors affecting patients' access to the kidney transplant waitlist after starting evaluation. We qualitatively assessed patients' perceived barriers to completing kidney transplant evaluation. Method(s) We conducted semi-structured telephone interviews with patients undergoing kidney transplant evaluation at 1 transplant program. Transcripts were analyzed by thematic analysis. Result(s) 26 patients participated (26% participation rate), identifying as Black (46%), White (39%), or Hispanic (15%), who underwent evaluation for a mean (SD) of 12 (23) months [range 1-120]. Critical barriers to completing transplant evaluation reported based on experiences at prior transplant programs and/or the current program were poor communication with the transplant team, negative interactions with the transplant team, and difficulties scheduling transplant tests. Due to inconsistent and unclear communication with the transplant team, patients reported they had "[no] clue about what's going on." The lack of follow-up from the team contributed to patients feeling a loss of control over their health. Patients did not know their waitlist status or what medical exams they needed to complete and reported repeated attempts to contact the team for information. Patients perceived the transplant team as "cold" and "uncaring" and reported feeling as if "nobody gives a damn about [them]." Seven (27%) patients reported that structural racism affected their transplant evaluation process. Transplant team interactions made Black patients feel less than human. One patient perceived that the team thought their transplant did not matter because "Black people don't usually do what they are supposed to do" compared to White patients. Black patients perceived the transplant evaluation process as "tough" for Black individuals, emphasizing the importance of having a transplant team who have "some cultural background in dealing with" minoritized patients. Black patients reported feeling as if the transplant team feared them and reported experiencing unfair treatment due to their race, prompting them to seek treatment elsewhere. Overall, patients reported difficulties scheduling and completing medical exams due to conflicts with their work and dialysis schedules. Patients experienced challenges with identifying hospitals that provided required clinical exams during the Covid-19 pandemic. Conclusion(s) Preliminary findings suggest that communication and structural barriers impede progression through the transplant evaluation process. Interventions are needed to redress these barriers. Further analysis will assess whether racial/ ethnic minorities experience barriers differently as a source of disparities in access to the transplant waitlist.