Missed opportunity: Despite one donor kidney offer, nearly one-third of Americans die or are removed from waiting list without transplant
For candidates who received at least one offer but died without a transplant, the first offer arrived a median of just 78 days after a candidate joined the waiting list
Patients in America who die waiting for a kidney or are removed from the transplant waiting list due to poor health are considered unfortunate victims of organ scarcity. However, a new study shows that most of the patients - including those who eventually died or were removed from the list - had at least one deceased donor kidney offer, but the offered organs were declined by their transplant team and subsequently transplanted in someone lower on the waiting list.
Shockingly, for the most part, patients were unaware of the rejected offers.
Examining 14 million kidney offers made between 2008 and 2015 to 367,405 waitlisted patients in the US, researchers found that 76% received at least one viable offer of a kidney. Among the candidates who received at least one offer during the study period, nearly one-third or approximately 10,000 people per year, died or were removed from the list without receiving a transplant.
The analysis shows that of the 280,041 eligible candidates who received one or more offers for a deceased donor kidney, 30% or approximately 85,000 people either died on the waitlist or were removed from the waitlist before receiving a kidney.
For candidates who received at least one offer but died without a transplant, the first offer arrived at a median of just 78 days after the candidate joined the list.
“Presumably, these offers were declined primarily because centers were expecting patients to get a better offer in a timely manner. In some cases, a decline may have been the right decision, but our data suggest that many others probably would have been better served if their transplant center had accepted one of the offers,” says study leader Dr Sumit Mohan, associate professor, Epidemiology and Medicine at the Columbia University Medical Center
The findings, says the research team, shows that a large number of deceased donor kidney offers are received by candidates but are declined on their behalf, resulting in what appears to be many “missed opportunities” for a transplant before death or removal from the waiting list.
The researchers say that patients who received a deceased donor kidney had a median of 17 organ offers before transplant, those who died on the waiting list had a median of 16 offers, and those who were removed from the list had a median of 15 organ offers.
The study estimates that overall, 10 patients with at least one previous offer of a donor kidney died each day during the study period.
“Of 280,041 waitlisted kidney transplant candidates who received at least one deceased donor kidney offer, approximately 30% of these candidates eventually died or were removed from the waiting list before receiving an allograft. Deceased donor kidney allograft recipients received a median of 17 offers over 422 days, whereas candidates who died while waiting received a median of 16 offers over 651 days. The odds of dying on the waiting list after receiving an offer varied across the US,” says the study published in JAMA Network Open.
The research team obtained data from the United Network for Organ Sharing Potential Transplant Recipient data set on all deceased donor kidney offers in the US made between January 1, 2008, and December 31, 2015.
The researchers say that currently, organ offers to transplant candidates are made to the transplant center at which a given candidate is waitlisted.
A center has the ability to decline the offer on the candidate’s behalf without informing the candidate of the offer or the reason it was declined. Organ offers are often declined on the basis of center-level organ selection practices rather than a detailed assessment of the advantages to each individual candidate of receiving that kidney allograft, including a shorter time receiving dialysis, says the study.
For their research, kidney offers that were automatically declined due to a center’s minimum acceptance criteria were counted as viable offers, but offers of kidneys that were eventually discarded and never transplanted were not.
Among the patients, 81,750 received a deceased donor kidney transplant; 30,870 received a kidney from a living donor. Further, 25,967 died on the waiting list, 59,359 were removed from the waiting list, and 82,095 remained on the waiting list. According to the research team, most kidneys (84%) were declined on behalf of at least one candidate - including organs that appeared to be an ideal immunological match - before eventually being accepted for transplant into other patients with lower priority on the match list.
Concerns about organ or donor quality were the predominant reason given by centers for refusing deceased donor offers. However, says the team, given that all included kidneys were eventually transplanted, these offer declines suggest that centers have varying thresholds for organ acceptability, which in turn has implications for patients waitlisted at centers that are more conservative in their organ quality assessments.
“Clearly, these organs were transplantable because all of them were eventually transplanted. We know 93% of transplanted kidneys are still working after one year and 75% are still working after five years, which calls into question the validity of these decisions to decline offers of a kidney,” says Mohan.
Patients were mostly not aware of the declined offers. The transplant team, say the researchers, has just 60 minutes to accept or reject an organ offer, and often patients are not told when an organ is declined on their behalf, even after the fact. Several potential policy changes could create a patient-centered organ offer process, disincentivize offer declines, and potentially decrease organ discards, says the study.
The researchers recommend that individual candidates should be made aware of all offers declined on their behalf. Such a step is likely to make centers more accountable to their patients, say the researchers. They explain while the time constraints preclude real-time shared decision-making, making patients aware of these organ offers subsequently will potentially improve patient engagement, resulting in a process that prioritizes stated patient preference of shorter time to transplant.
“It is better to get a less-than-perfect kidney sooner than to wait years for the perfect kidney to come along. Better communication between patients and transplant centers may prompt a reconsideration of how and when to decline offers,” says Mohan.