Undergoing a transplant in the United States is a complex, multistep process and one historically focused almost exclusively on outcomes, speakers said during a Kidney Week 2023 session on optimizing use of deceased and living donor kidneys. A more transparent process and open communication with patients could lead to better shared decision making and potentially, use of more extended criteria organs and better health outcomes.
Patients with end stage kidney disease need to be educated about dialysis and referred to a transplant center for a comprehensive evaluation, said Sumit Mohan, MD, MPH, FASN, associate professor of medicine and epidemiology at Columbia University in New York City and director of quality and outcomes research for the transplant initiative at New York-Presbyterian Hospital. Then, there is somewhat of a “black box” of being selected to get on a waitlist, he said, which no doubt leads to attrition at each step.
“What's frequently not discussed is that there is a lot of variation in terms of what happens between the waitlist and transplantation,” Mohan said. “The common refrain is, ‘If we need to increase transplantation rates, we need more donors.’ I would argue perhaps a better first step would be improving deceased organ utilization rates, which are abysmal in the U.S.”
Approximately 7500 kidneys procured for transplant were discarded in 2022, he said, and we are on pace to discard 8000 kidneys this year. Common reasons cited for passing up organs include physicians thinking an organ is of poor quality, taking too long to find a recipient, or not locating a recipient, he said. However, studies have shown that kidneys from donors who are diabetic, for example, do well (1). Approximately half of the kidneys ranked at 60% or higher using the Kidney Donor Profile Index are being discarded, Mohan said, equivalent to a kidney from a 55-year-old donor with hypertension (2). “I think the vast majority of us in this room, if we needed a kidney transplant, would say yes to that,” he said.
Kidneys often are turned away because of subconscious bias or preferences on the part of physicians, he added, or because medical centers set up filters for certain characteristics, which results in organs not being offered to their patients. Additionally, kidneys procured over the weekend are 20% more likely to be unused (2). “That's not a quality problem; that's a transplant center challenge,” Mohan continued. Whether a patient gets a transplant also can rely on geographic region, with areas more likely to accept organs more likely to be transplanted. The process often is opaque to patients, he said.
From 2008 to 2015, 14 million deceased donor kidney offers were made, Mohan stated (3). Of those, 84% were declined at least once, and 76% of patients on the waitlist received at least one offer for a kidney. However, only 2.6% of offers were declined for a recipient-related reason.
To improve access to transplantation and lower discards, Mohan posits that transplant centers need to begin with transparency with patients and incorporate patient preferences to inform organ-offer choice. However, he noted, they should not wait until they have an organ in hand to decide. Instead, they should begin communications early and periodically update people on the waitlist about organs offered for them that the center declined, providing reasons. The process would allow for increased engagement with both patients and nephrologists and “eliminate this idea of paternalism that exists in traditional medicine, where we think these decisions are too complex for our patients,” he said.
Boulware LE, et al. Effectiveness of educational and social worker interventions to activate patients’ discussion and pursuit of preemptive living donor kidney transplantation: A randomized, controlled trial. Am J Kidney Dis 2013; 61:476–486. doi: 10.1053/j.ajkd.2012.08.039
Boulware LE, et al. Transplant social worker and donor financial assistance to increase living donor kidney transplants among African Americans: The TALKS Study, a randomized comparative effectiveness trial. Am J Transplant 2021; 21:2175–2187. doi: 10.1111/ajt.16403