Where should I have my lung transplant? How long am I gonna wait for my kidney transplant? How long am I going to live after my heart transplant? Who does the most liver transplant? Those questions are asked by pretty much every patients waiting for organ transplantation. If you live in a major US city you may have the choice to pick your transplant center just like choosing a dentist. On the other hand if you live more in a remote area, options may be limited depending how far you are willing to temporarily relocate. Some patients will travel several hundred miles so they can be treated by the best transplant center possible.
The best centers are not always the ones with the best survival rates though. I can hear some choking now. There is more to it and let me explain myself. It is all about interpretation of the numbers and there are quite a few of them to sort out. Fortunately, those numbers are as accurate as it can be. No transplant center wants to get caught skewing numbers because that could mean the end of their program and loss of reputation. Organ transplantation is the most regulated medical specialty in this country and every center is judged by these statistics. Every transplant center is judged by their “numbers”; government, regulatory agencies and insurance companies look at them and examine them.
These statistics are available at all times to the public but may be a little hard to understand. They are found in the national database Scientific Registry of Transplant Recipients (SRTR) website.
When you get to the SRTR website this is what you will first see (above). The first page has all solid organ (heart, liver, kidney, lung, etc.) lined up. You just have to click on the organ that interests you and then you get a graph similar to this one (below).
It will show you a list of every single hospital in the US performing that specific organ transplant sorted by state alphabetical order. You also have the option to isolate one state at a time for a faster research. That could be easier for you when looking for one particular hospital. On my graph above, I have picked the hospitals performing lung transplant in Ohio. If you look at the dates reported you may find that surprising. This is the most up to date this is going to get. The three-year survival rate is about 3 and half years behind. This is just the way it is. New data should be coming in July as they come out every 6 months.
The “one” number I want you to understand is the patient survival rate at 3 years. In this graph it is anywhere between 61% and 71%. Just underneath that number you can see the “AS EXPECTED” mention. This means they have all meet they expected survival rate. More than 90% of all the transplant centers get that mention. The rest is split by HIGHER THAN EXPECTED and the not so appealing LOWER THAN EXPECTED.
The expected survival rate is calculated based on several factors. The main one being how sick the patients were before they got transplanted. A hospital accepting sicker patients will have a lower expected value which is statistically good for them as less patients are expected to live 3 years. The opposite is also true. You really have to keep that in mind when looking at survival rate. The key element is to see if they have met their expected value. If a transplant hospital constantly gets a “LOWER THAN EXPECTED” value, they may be forced to close by the government as their outcomes are not good enough.
Even though they just show the 3-year survival rate for organ transplant in the patient friendly graph, there is 1 month and 1 year survival rates that are important too. Out of these three important stats, the long term survival is more significant and more in line of what patients want to know anyway. This is why the 3-year value is a significant data for the population. Those statistics are helpful but you have to keep in mind that they are at least 3 years old.
A transplant center may have gotten worst or better since then and that will not be reflected any time soon. Another important point to is the fact there is no discrimination about a death reported. You can have a patient that never had any complication after organ transplant until the day before his 3 years anniversary and then die in a car accident. That death will go against the hospital just like the one of a patient who dies from complication since surgery at one year. A death is a death, that’s it.
The only way to know how these hospitals have been doing lately is to dig more in the SRTR website and you can find the 1-month and 1-year survival rates that are no more than 2 years out. All other kinds of data are also available. You can compare everything by race, sex, disease and it can be time consuming. You will need a lot of patience but it could be worth it. You are talking about your life here!