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.
ABSTRACT
Background: Older adults faced treatment decisions for kidney failure during the COVID-pandemic, despite high risk of hospitalization, intensive care, and death. Given heightened uncertainty, clinicians needed to adapt communication about risks, benefits, and treatment decisions during the COVID-19 pandemic. Understanding how to support decision-making during uncertain times can guide clinicians in future public health crises. Methods: Qualitative study using semi-structured interviews (August-December 2020) with CKD stage 4-5 patients, age 70+, carepartners, and clinicians in Boston, Portland, Maine, San Diego, and Chicago. Thematic analyses were conducted. Results: Among 76 participants (39 patients, 17 carepartners, 20 clinicians) 13 patients (33%) identified as Black, and 7 (18%) were receiving dialysis. Four themes characterized treatment decision-making during the COVID-19 pandemic: Difficulty communicatng risk: balancing hope with caution;Clinicians' increased support for home dialysis;Patient confidence in chosen modality;and Coping with uncertainty and isolation in CKD. Clinicians struggled to balance discussion of COVID-19 risks while preserving hope. Black patients reported fewer conversations about COVID-19 risks than White patients and had more unaddressed questions. Clinicians reported being more open to home dialysis than pre-COVID-19. While some patients expressed interested in conservative management, few clinicians offered conservative management as an option. All patients who had initiated treatment prior to COVID-19, irrespective of modality, believed that their treatment was safest and optimal during the pandemic. With few clinical converations incorporating COVID-19-specific risks, patients and carepartners struggled to cope, finding both in-person and telehealth visits safe but isolating. Conclusions: Although clinicians struggled communicating about COVID-19 leaving patients with unadressed concerns, patients across modalities felt safe and confident in their treatment. Clinicians developed an openness to home dialysis, though few offered conservative management despite patient preferences. Research should examine optimal approaches to enhance communication and shared-decision making to prepare for future systemic challenges.