It’s not always patience and luck that get patients off the organ transplant waiting list and into the operating room.
Unlike in many areas of medicine, experts say there’s a lot of variation in the US transplant system. Knowing there are differences and what to ask might help.
“I had to ask a lot of questions to figure out what it was that I could do to move the needle,” said Katherine Screws of Phoenix, who got a rare intestine transplant after she decided to get on the waiting list at more than one hospital to increase her chances.
It can be difficult to learn how to navigate that search, but there’s publicly available information about which hospitals perform the most of each type of transplant, plus their waiting times and outcomes. Long used by experts analyzing the transplant system, the Scientific Registry of Transplant Recipients, or SRTR, database has new patient-friendly tools developed in the hopes that more would-be transplant recipients will use it.
“People are making these really high-stakes decisions without understanding the options,” said Dr. Allyson Hart of Minnesota’s Hennepin Healthcare Research Institute, who helped design the tools.
There are about 100,000 people on the US transplant list at any given time, the vast majority of whom need a kidney. With just over 49,000 transplants performed in the US last year, more people than ever are getting new organs. It’s mostly thanks to over a decade of increases in donations from the deceased, which are recovered by organ procurement organizations, or OPOs.
But more organs are needed to meet the demand, and different transplant hospitals have different criteria for who they’ll accept on their waiting list.
Sometimes, “if a patient receives a ‘no’ at one place, they can go somewhere else and be successfully transplanted,” said Dr. Syed Ali Husain, a kidney specialist at NYU Langone Health.
Each transplant program’s waiting list is linked to a national automated matching system. OPOs enter information about viable organs into that system, which generates lists of possible matches at multiple hospitals in order of priority. When the OPO offers an organ, the transplant team must quickly decide if it’s a good choice for that patient or the offer moves to the hospital with the next-in-line candidate.
Some hospitals are more conservative than others about which organs they’ll accept, said Husain, who studies such differences.
One large study of kidney transplants found “there’s about a 16-fold variation in how quickly a patient will get transplanted at one center versus another,” he said. That’s partly because some surgeons have more experience than others using kidneys with complex anatomy such as extra arteries, or those from older, sicker donors that still may be better than dialysis for the right patient.
Typically, a doctor or other health worker points patients to the nearest hospital offering the kind of transplant they need. But the SRTR database allows people to compare transplant centers around the country in multiple ways.
Search for a particular organ and a list of the highest-to-lowest-volume centers pops up, with dials to show how they perform on such measures as getting a transplant faster, survival on the waiting list and the new organ’s survival. Click on those of interest for more data.
For certain organs, there’s a “personalized decision guide” to customize the search a little more with demographic and medical information that compares outcomes for patients similar to you. It may be important to know, for example, if hospitals you’re considering perform transplants for a lot of older adults or people with certain chronic illnesses, Hart said.
There’s more data about kidneys, the most-transplanted organ, and a kidney decision aid also allows adding factors such as blood type and diabetes that play a particular role in those transplants. That tool shows the chances of getting a transplant in the first five years after joining the waiting list, or the alternatives — still waiting or having died or become too sick to get a transplant.
Like Screws, the Phoenix patient, some people choose to “double list” at a hospital closer to home and another higher-volume transplant program further away.
While not everyone is able to travel, the search tools can also help inform discussions with your chosen transplant program.
It’s OK to come to a transplant program to say, “‘Hey, there are other centers that do this faster. Help me understand why,’” Hart said. “Sometimes, that conversation is really enough to prompt maybe more aggressive offer acceptance than that center might otherwise do on their own.”
