SRTR adds tools for comparing U.S. transplant centers

Kidney transplant speed varies about 16-fold among centers, Husain said

The Scientific Registry of Transplant Recipients has added patient-friendly tools to a database long used by experts analyzing the U.S. transplant system. The tools let prospective recipients search by organ, compare centers from highest to lowest volume and review measures including how quickly patients receive transplants, survival on the waiting list and survival of the new organ.

It can be difficult to learn how to navigate the transplant search, but publicly available information already shows which hospitals perform the most of each type of transplant, along with their waiting times and outcomes. SRTR developed the tools in the hope that more would-be transplant recipients would use the database.

Getting off the transplant waiting list and into the operating room does not always depend on patience and luck. Unlike in many areas of medicine, experts say there is a lot of variation in the U.S. transplant system, and knowing there are differences and what to ask might help.

Dr. Allyson Hart of Minnesota’s Hennepin Healthcare Research Institute, who helped design the tools, said, “People are making these really high-stakes decisions without understanding the options.”

Katherine Screws of Phoenix received a rare intestine transplant after she chose to join waiting lists at more than one hospital to increase her chances. She said, “I had to ask a lot of questions to figure out what it was that I could do to move the needle.”

The Associated Press reported that about 100,000 people are on the U.S. transplant list at any given time, and the vast majority need a kidney. Just over 49,000 transplants were performed in the United States last year, more than ever, according to the report. The increase has come largely from more than a decade of rising donations from deceased donors, whose organs are recovered by organ procurement organizations, or OPOs. More organs are still needed to meet demand.

Each transplant program’s waiting list links to a national automated matching system. OPOs enter information about viable organs, and the system generates possible matches at multiple hospitals in priority order. When an OPO offers an organ, the transplant team must decide quickly whether it is a good choice for that patient; otherwise, the offer moves to the hospital with the next-in-line candidate.

Transplant hospitals can set different criteria for who they accept onto waiting lists and can differ in how conservative they are about which organs they will use. Dr. Syed Ali Husain, a kidney specialist at NYU Langone Health who studies the differences, said that sometimes “if a patient receives a ‘no’ at one place, they can go somewhere else and be successfully transplanted.”

One large kidney-transplant study found “there’s about a 16-fold variation in how quickly a patient will get transplanted at one center versus another,” Husain said. Part of the difference comes from surgeons’ experience with kidneys that have complex anatomy, including extra arteries, and with kidneys from older or sicker donors. Such kidneys can still be better than dialysis for the right patient, Husain said.

Typically, a doctor or other health worker points a patient toward the nearest hospital offering the required transplant. SRTR broadens the options by allowing searches for a particular organ and displaying centers from highest to lowest volume. Controls show how quickly patients receive transplants, whether they survive on the waiting list and whether the new organ survives. Users can open individual centers for more data.

For certain organs, a personalized decision guide uses demographic and medical information to compare outcomes for patients similar to the user. Hart said that information may matter because some centers perform transplants for many older adults or people with certain chronic illnesses.

SRTR also provides more data about kidneys, the most-transplanted organ. Its kidney decision aid can include factors such as blood type and diabetes. The tool displays a patient’s chances of receiving a transplant during the first five years after joining the waiting list, along with the alternatives of still waiting, having died or having become too sick to receive a transplant.

Some candidates choose to double-list at a hospital near home and another higher-volume transplant program farther away. Not everyone can travel, but the comparison tools can still inform discussions with a chosen program.

Hart said it is reasonable to go to a transplant program and say, “Hey, there are other centers that do this faster. Help me understand why.” Hart said that sometimes such a conversation is enough to prompt maybe more aggressive offer acceptance than that center might otherwise make on its own.