It is not always patience and luck that allow patients to get off the waiting list for an organ transplant and reach the operating room.
Unlike many areas of medicine, experts say there is a lot of variation in the U.S. transplant system. Knowing that there are differences and what questions to ask could help.
“I had to ask a lot of questions to find out what I could do to speed up the process,” said Katherine Screws of Phoenix, who received a rare intestinal transplant after she decided to get on the waiting list at more than one hospital to improve her chances.
It can be difficult to learn how to navigate that search, but there is publicly available information about which hospitals perform the most of each type of transplant, in addition to their waiting times and results. The Scientific Registry of Transplant Recipients (SRTR) database, long used by experts analyzing the transplant system, features new patient-friendly tools that were developed in the hope that more potential transplant recipients will use it.
“People are making these high-stakes decisions without understanding the options,” said Dr. Allyson Hart of the Hennepin Healthcare Research Institute in Minnesota, who helped design the tools.
These are some of the details you should know.
Each transplant center has different criteria
At any given time, there are about 100,000 people on the U.S. transplant list, the vast majority of whom need a kidney. With just over 49,000 transplants performed in the United States last year, more people than ever are receiving new organs. This is mainly due to more than a decade of increase in deceased donations, which are recovered by organ procurement organizations (OPOs).
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However, more organs are needed to meet demand, and different transplant hospitals have different criteria for who they accept on their waiting list.
Sometimes, “if a patient is told no at one location, they can go to another location and successfully receive a transplant,” explained Dr. Syed Ali Husain, a nephrologist at NYU Langone Health.
Each transplant program’s waiting list is connected to a national automated matching system. The OPOs enter information about viable organs into that system, which generates lists of possible compatibilities in several hospitals in order of priority. When the OPO offers an organ, the transplant team must quickly decide if it is a good option for that patient; otherwise, the offer moves on to the hospital with the next candidate in line.
Some hospitals are more conservative than others in which organs they accept, said Husain, who studies those differences.
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A large-scale study of kidney transplants found that “there is about a 16-fold variation in how quickly a patient will receive a transplant at one center compared to another,” he said. This is partly because some surgeons have more experience than others in using kidneys with complex anatomy, such as extra arteries, or those from older or sicker donors that may still be a better option than dialysis for the right patient.
How to find information about transplant centers
Typically, a doctor or other health care professional refers patients to the nearest hospital that offers the type of transplant they need. But the SRTR database allows people to compare transplant centers across the country in multiple ways.
When searching for a specific organ, a list of centers appears, ordered from highest to lowest volume, with indicators that show their performance in aspects such as speed to receive a transplant, survival on the waiting list, and survival of the new organ. Click on the ones that interest you to obtain more information.
For certain organs, there is a “personalized decision guide” that allows you to further tailor your search with demographic and medical information that compares the results of patients similar to you. It may be important to know, for example, whether the hospitals you are considering perform transplants for many older adults or people with certain chronic diseases, Hart explained.
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There is more data on kidneys, the most commonly transplanted organ, and a kidney decision support tool also allows you to add factors such as blood type and diabetes, which play a particular role in those transplants. This tool shows the chances of receiving a transplant in the first five years after entering the waiting list, or the alternatives: continuing to wait, having died, or having become too sick to receive a transplant.
It’s okay to ask questions of the transplant team
Like Phoenix patient Screws, some people choose to enroll on two lists: a hospital closer to their home and another, higher-volume transplant program, even if it’s farther away.
While not everyone can travel, search tools can also help inform conversations with your chosen transplant program.
It’s okay to go to a transplant program and say, “Hey, there are other centers that do this faster. Help me understand whyHart said. “Sometimes that conversation is really enough to drive perhaps more aggressive offer acceptance than that facility would do on its own.”
