Patients Die on Wait List as US Centers Refuse Donor Kidneys

Pam Harrison

August 30, 2019

Multiple opportunities to offer dialysis patients a donor kidney when one becomes available are missed every day across the United States because transplant centers often turn down organs, new research shows.

The findings were published online August 30 in JAMA Open by S. Ali Husain, MD, MPH, of Columbia University Medical Center in New York City, and colleagues.

In this new analysis of the nation's perceived "donor organ shortage," the investigators report that approximately 10,000 potential candidates each year who had received at least one organ offer for a deceased donor kidney either died or were removed from the wait list without receiving a transplant over the period examined, between January 2008 and December 2015.

Even worse, those who died waiting for a kidney received a median of 16 offers on their behalf while on the wait list for a median of 651 days.

Patients also did not usually know that these offers had been made on their behalf because transplant centers generally do not discuss offers of a donor kidney that is declined with potential recipients, primarily because of time constraints, the report found.

"Honestly, we were surprised by the results of our analysis," senior author Sumit Mohan, MD, associate professor of medicine at the Columbia University Vagelos College of Physicians and Surgeons, New York City, told Medscape Medical News.

"Not only are patients spending much longer on the wait list than needed, the problem is that a significant proportion of them die waiting for an organ," he lamented.

"While transplant centers are working to try to get patients the best organ they can, clearly for patients who died, taking a less-than-perfect kidney would have been the right choice," Mohan stressed.

Ten Patients Previously Offered a Kidney Die Every Day

For their study, the Columbia University investigators set out to see what the outcomes were for wait-listed kidney transplant candidates after a transplant center's refusal to accept a deceased donor kidney offer on their behalf.

They used the United Network for Organ Sharing (UNOS) Potential Transplant Recipient dataset, which includes an ordered list of all matched kidney transplant candidates and deceased donor kidneys offered.

Importantly, the current analysis excluded all kidneys that ended up being discarded. (A French study, reported by Medscape Medical News earlier this week, showed that deceased donor kidneys are twice as likely to be discarded in the United States as they are in France.)

The final cohort included 280,041 adults who were wait-listed for kidney transplantation and for whom at least one allograft offer had been received by the transplant center during the 8-year study interval.

The median time that patients had been on dialysis at the time they were listed for kidney transplantation was 1.2 years. Median follow-up was 755 days from the time patients were placed on the waiting list.

"A mean of 10 candidates who previously received an offer [for a donor kidney] died every day during the study period," Mohan and colleagues report.

Over 80% of Kidneys Initially Declined as Centers Wait for 'Ideal' Organ

The median time between centers receiving their first donor organ offer for those next-in-line for a kidney was only 48 days after the patient had been first placed on the waiting list, the authors report.

Patients who actually received a kidney transplant from a deceased donor had a median of 17 offers while on the wait list for a median of 422 days before actually receiving the transplant.

"Similarly...those who were removed from the waiting list received a median of 15 offers...while wait-listed," the authors add.

Overall, 84% of deceased donor kidneys were declined on behalf of one or more potential donor recipients before they were accepted for transplant.

And some 27% of all transplanted kidneys were refused for all potential candidates in the center's donation service area, leading to their use outside of their designated geographic area, the authors add.

Mohan cautioned, however, that the quality of the data detailing the reasons for declining a kidney offer is relatively poor.

"As reported by centers, organ or donor quality concerns accounted for...92.6% of all declined offers," the investigators note, "whereas offers were infrequently refused because of patient-related factors...(2.6%), logistical limitations...(0.5%) or other concerns."

Importantly, all donor kidneys in the current analysis were eventually transplanted into someone waiting for an allograft somewhere in the United States, they were just lower down on the wait-list allocation system.

"These are all kidneys that somebody else used with good results, so we are not talking about kidneys that were discarded," Mohan explained.

"I think the problem is that transplant centers are thinking that they are going to get a better kidney, not taking into consideration what a patient is experiencing while being on dialysis," he said.

And, he added, "The likelihood of a patient being dead by the time the center gets an 'ideal' kidney is much higher than some centers realize."

The authors also found significant geographic variation in the risk of dying while on the wait list for kidney transplantation once centers had received at least one offer for a donor kidney for the next-in-line candidate.

Maine had the best performance at a state level in terms of having the lowest risk of death among candidates after the transplant center had received an offer of a donor kidney.

Moreover, the median number of offers received by the transplant center before candidates died while on the waiting list also varied by state, ranging anywhere from one to 11 offers, to 11 to 74 offers.

Decisions Taken Under Pressure but More Transparency Needed

Mohan did stress that transplant centers are under considerable pressure to make quick decisions on whether or not to accept a donor kidney when one becomes available.

They have only 60 minutes to decide whether to take a kidney or not, so that if they decline it, the same kidney can be offered to the next patient on the list.

"This means that there really isn't time to have a shared decision-making conversation with the patient," he noted.

However, Mohan still feels that there is an urgent need to increase transparency around what kind of donor organs transplant centers are willing to accept in terms of donor organ quality.

"I think patients have a right to know this because that could change where they would go to get listed for a donor organ," he suggested.

Secondly, if a center declines an organ, patients have a right to know about this refusal simply because for them, their main priority is probably not to get that perfect kidney — as the transplant center might wish — but rather to get off dialysis sooner because they are having a terrible time with dialysis, he noted.

"Because of the adverse effect of longer pretransplant dialysis exposure on posttransplant outcomes, even candidates who eventually received allografts would likely have experienced better expected survival and quality of life from accepting an earlier offer," the authors point out.

"And these missed opportunities for an earlier transplant occur despite evidence that receiving even marginal-quality kidneys provides survival and quality-of-life advantages over ongoing wait-listing for most candidates," they add.
Or as Mohan reiterates: "Better to get a less-than-perfect kidney sooner than to wait years for the perfect kidney to come along."

Mohan has reported receiving grants from the National Institutes of Health and personal fees from the Health Services Advisory Group, Centers for Medicare & Medicaid Services, Angion, and Kidney International Reports.

JAMA Open. Published online August 30, 2019. Full text

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