Many Americans who stand to benefit most from a kidney transplant may be missing a key window of opportunity, a new study finds.
The study focused on kidney failure patients who would be expected to live many years after receiving a kidney transplant. That generally includes relatively younger people without other major medical conditions.
In 2014, the U.S. kidney allocation system made changes to help ensure those patients receive a donor kidney that is likely to function for many years -- which typically means from a young, healthy donor.
A scoring system, called the estimated post-transplant survival (EPTS) score, was introduced. Once transplant candidates are placed on the waitlist, they are given an EPTS score; those in the "top 20%" get priority whenever a particularly high-quality kidney becomes available.
But the new study found that many patients who would fall into that category are not making it onto the transplant waitlist in a timely manner.
Of more than 42,000 U.S. patients who would score in the top 20%, fewer than half were on the waitlist. And among the 34,000-plus who'd started kidney dialysis, only 37% were waitlisted for a transplant within three years.
"It's extremely discouraging," said study leader Jesse Schold, a researcher at the Cleveland Clinic in Ohio.
These are patients who are very likely to do well after a transplant, he said. But by the time they get on the transplant list, many will no longer have a top EPTS score.
In fact, Schold's team found, of dialysis patients, 61% fell out of the top 20% group within 30 months. And, as seen throughout U.S. health care, there were disparities: Black patients and those from low-income groups were less likely to be waitlisted.
The findings were published online June 17 in the Journal of the American Society of Nephrology.
Kidney transplant is considered the best option for most people with end-stage kidney disease, or kidney failure. Currently, more than 90,000 Americans are on the donor-kidney waitlist, according to the United Network for Organ Sharing (UNOS), the nonprofit that manages the nation's donor organ system.
"It's much better to be referred for a transplant before you need dialysis, which is called preemptive waitlisting," said Dr. Joseph Vassalotti, chief medical officer of the nonprofit National Kidney Foundation. "Unfortunately, that doesn't happen enough."
The current study, he noted, looked at patients who would be optimal transplant candidates -- all with EPTS scores in the top 20% and an average age of 38.
"They should have a very high percentage of placement on the waitlist," Vassalotti said.
Yet of the 42,445 patients, only about 7,900 were preemptively waitlisted. The rest -- more than 34,500 -- started dialysis sometime between 2015 and 2017, and only 37% moved onto the transplant waitlist within three years.
Ideally, the issue needs to be addressed far "upstream," Schold said -- meaning more Americans with kidney disease need access to optimal care well before their kidneys fail.
Vassalotti said racial and income disparities in waitlisting might, at least in part, be related to lack of access to specialized kidney (nephrology) care -- whether it's because primary care doctors are not referring patients, patients cannot afford it, or there are few specialists in patients' local areas.
But Vassalotti also said doctors need to do a better job of communicating about the benefits and risks of transplant versus dialysis. And those discussions, he said, should happen early, so patients can be "empowered" to plan for what they want when their disease progresses.
Darren Stewart, principal research scientist with UNOS, said the EPTS score has helped better "longevity match" transplant candidates with donor kidneys. (Donor kidneys, themselves, are also subject to a scoring system.)
"But this study highlights the disparities in access to the waitlist in the first place," Stewart said.
He noted that UNOS does not have the ability to create policies on what happens before patients are waitlisted. But he agreed that both better access to nephrology care, and better patient education about transplants, are needed.
Schold also said that education is critical, but the process of getting on the waitlist could be made less cumbersome, too.
He pointed to the idea of an automated system that refers all patients with late-stage kidney disease for a transplant -- or at least a subset of patients, such as those who would have a top 20% EPTS score.
"We have to make these processes easier," Schold said.
The National Kidney Foundation has more on kidney transplantation.
SOURCES: Jesse Schold, PhD, researcher, quantitative health sciences, Cleveland Clinic, Ohio; Darren Stewart, MS, principal research scientist, United Network for Organ Sharing, Richmond, Va.; Joseph Vassalotti, MD, chief medical officer, National Kidney Foundation, New York City; Journal of the American Society of Nephrology, June 17, 2021, online