Improving the Utilization of Deceased Donor Kidneys by Prioritizing Patient Preferences

Abstract

For patients with kidney failure without a living kidney donor available, deceased donor kidney transplantation is the only option to receive the survival and quality-of-life benefits of a kidney transplant. As a result, the fair and equitable allocation of this scarce and precious resource is an important priority for the transplant community. Iterative improvements in the kidney allocation system have led to considerable progress in achieving these goals, but there remain significant system shortcomings rooted in a history of misaligned regulatory oversight, perverse incentives, and failure to adequately incorporate patient preferences. To date, the primary focus of the regulatory framework for transplant centers has been almost exclusively short-term post-transplant outcomes. However, the achievement of excellent short-term outcomes has come at the expense of extreme selectivity regarding which organs are accepted for transplantation and which patients with kidney failure are waitlisted—in essence, promoting and prioritizing post-transplant outcomes for the minority of patients fortunate enough to get waitlisted and receive a transplant (1,2). As a result, we now have a system with low organ acceptance rates that continues to drive up the discard of transplantable donated organs and a waitlist that represents a shrinking proportion of the growing national population of patients with kidney failure on the national transplant waitlist (Figure 1).Figure 1.: The challenge of getting patients with kidney failure transplanted. (A) The multiple steps to transplantation for patients with kidney failure. (B) Increased selectivity for both organs and patients is driving a steady increase in the proportion of the deceased donor kidneys discarded, along with a decrease in the proportion of the patients with prevalent kidney failure waitlisted for a transplant.Getting on the waitlist is a prerequisite to receiving a transplant but serves as a critical bottleneck in transplant access, with a complex multistep process that requires patient education, referral, evaluation, and approval by a selection process that is confusing to both patients and the referring nephrologists (Figure 1). Although suboptimal listing rates have been repeatedly demonstrated, there remains a large gap in our understanding of where patients are lost in the steps to the transplant waitlist nationally, and there is considerable room for improvement in how transplant centers communicate this information to their patients and referring nephrologists (3). Although this is the series of steps at which the largest share of patients with kidney failure are lost from the path to a life-saving transplant, the Organ Procurement and Transplantation Network currently does not collect any national data that can inform the transplant community about the factors that contribute most to failure to be waitlisted and has never included a waitlisting performance metric for centers. Even when patients successfully navigate the health care system and succeed in getting waitlisted, access to a transplant is not a level playing field. Deviations from the rules encoded in the allocation system are common, and only a small minority of donated kidneys are transplanted into the candidates with the highest waitlist priority. Further, the probability of transplantation is highly variable between transplant centers—variation that has erroneously been attributed exclusively to differences in local organ supply when the primary driver of this variation is transplant center behavior (4). The number of deceased donor kidneys used at a transplant center is determined primarily by whether a center is (1) willing to accept organs that are offered to them or (2) has opted for a “bypass,” namely, when they do not even want to be contacted for organs from certain types of donors for any of their patients who are waitlisted (4,5). Transplant centers receive organ offers from donors that they are willing to consider for specific patients on their waitlist in the order of priority. Centers have the option of either accepting or declining the organ using their best clinical judgment. Admittedly, many of these offers are declined due to the logistical challenges of getting the organ from the donor hospital to the recipient center in a timely manner. The most recent iteration of the allocation system dramatically increased the complexity of the allocation system, thus greatly increasing logistical challenges, resulting in many more organ declines and organ discards (6). However, even when centers receive an organ offer where logistical concerns are not a barrier, the vast majority (i.e., approximately 99%) of offers are declined, presumably in the hope that these potential recipients would receive a better organ offer in a relatively short time frame. This would imply that centers are making decisions about the trade-off between the quality of the organ and the time spent on dialysis—almost exclusively without the active participation of patients or even an asynchronous consultation about what they would want. These choices often contradict the underlying evidence base (e.g., organs from AKI donors or donors that are hepatitis C positive), are not publicly disclosed to patients or referring clinicians, and drive organs to patients at other transplant centers (7). It is important to remember that studies describing these declined offers have included only organs that were subsequently accepted for a different patient with a lower allocation priority. These declined offers contribute to existing disparities—with little evidence to suggest the organs declined multiple times perform any worse than would be expected for other organs of similar quality (8). In contrast, there is clear evidence that centers are frequently making the wrong choice for their patients, as approximately one third of patients who are waitlisted and receive at least one organ offer are subsequently either delisted without a transplant or die on the waitlist (4). Ultimately, the single biggest predictor for improved survival for individuals with kidney failure is whether they receive a transplant at all. Patients also understand this intuitively and describe time to transplant as the most important factor in their choice of transplant center (9). In this issue of CJASN, Mehrotra et al. have taken this research a step further with an important and elegant analysis demonstrating, with a discrete choice experiment, how patients view the trade-off between kidney quality and waiting time (10). Their work shows that patients are seemingly more willing to accept an organ than their transplant centers. For example, 20% of patients in their cohort were willing to do anything to get off dialysis, whereas others where more accepting of longer wait times for a better-quality kidney. This study clearly demonstrates something we all know—that considering patients who are waitlisted as a monolithic group that views the trade-off between waiting time and organ quality similarly is a mistake. This trade-off must be seen in the context of the individual patient, and transplant centers need to find ways to engage with patients and understand their preferences. Patients clearly have different thresholds for their ability to tolerate dialysis and their desire to receive an early transplant without waiting for a hypothetical better kidney at some point in the future. They deserve to be able to identify transplant center practices, including bypass criteria and organ offer acceptance rates, in a manner that allows them to easily determine the effect they have on their probability of a transplant so they can pursue waitlisting at a center that aligns with their values and preferences, or perhaps have their center align behavior with their preferences (5,11). Although real-time engagement during the actual allocation process may be prohibitively time consuming and complex, asynchronous discussions about quality of life and preferences are not unreasonable, and we must find ways to incorporate patient preferences as we strive to improve transplant system equity and efficiency. It is clear patients can articulate their preferences, and we need to move past the paternalistic idea that these decisions are too complex for patients to participate in. Disclosures S.A. Husain reports receiving research funding from the Nelson Family Foundation and receiving honoraria from Fresenius. S. Mohan reports having consultancy agreements with Angion Biomedica, eGenesis, and Health Services Advisory Group; reports serving as Deputy Editor of Kidney International Reports, a member of Scientific Recipient for Transplant Recipients Review Committee, a member of American Society of Nephrology Quality committee, and National Faculty Chair of ESRD Treatment Choices Learning Collaborative, and as Vice Chair of the United Network for Organ Sharing Data advisory committee; reports receiving research funding from the Kidney Transplant Collaborative and the National Institutes of Health (National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Minority Health and Health Disparities, and National Institute of Biomedical Imaging and Bioengineering); and reports receiving personal fees from Kidney International Reports and Health Services Advisory Group, outside of the submitted work. Funding This work was supported by National Institutes of Health grants R01-DK114893, U01-DK116066, R01-DK126739, U01-DK130058, and R01-MD014161 (to S. Mohan) and Nelson Family Faculty Development Awards (one to S. Mohan and one to S. Husain).

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