Saturday, March 10, 2007

How To Look Up A Transplant Center

Many people seem to be finding this blog while looking for the statistics and reputation of specific transplant centers, or transplantation overall (with the exception of the diverse and dedicated crowd at Grand Rounds). In the spirit of "giving the people what they want", this week's post is the short course on some ways to find this kind of information on the Internet.

A few notes at the outset. First, there's no single best transplant center (like all rankings, the various players jiggle around in position from year to year), but there are better and worse ones. Second, like almost all information on the Internet, information about transplant centers is scattered about in many forms, none of them perfect. Finally, this is limited to information in the United States. Transplantation is a worldwide enterprise, but I wanted to keep the length reasonable, and I'm not as familiar with other countries' systems.

The first place to start is the transplant center's web site. These are invariably "puff pieces" (I've never seen a center with a "weaknesses" section on their site!) but they do show who has a transplant program, and give plenty of practical and objective information like contact information, names and background of staff members, and usually some of their guidelines and practices. UNOS (United Network for Organ Sharing) and TRIO (Transplant Recipients International Organization) maintain lists of transplant centers' web sites. Like all links, these can be outdated or nonspecific (e.g., linking to the hospital's main page), but they are a place to start. However, there are sources that allow you to compare transplant centers more objectively.

Outcome Data

The Scientific Registry of Transplant Recipients (SRTR) is an invaluable resource for statistics in transplantation. It provides summaries for the entire country in an annual report (under the National Transplant Statistics tab)--how many people were added to the waiting list, how many transplants occured, and what current success rates are in terms of patient and graft survival for various timepoints...it's all here.

The two most important measures for patients to compare transplant centers are (1) how long the wait is and (2) how well patients do after transplant, and this information is thoroughly described and analyzed by the SRTR. Waiting times vary both by center and by the local organ procurement organization (OPO), and there are several tables of information on this (Tables 1 through 6 in the center reports and Tables 1 through 7 in the OPO reports). Post-transplant success has fewer measures, which makes it easier to comprehend. Graft survival (Table 10) and patient survival (Table 11) are reported for each center, with permutations for different time frames, adult vs. pediatric transplants, and living vs. deceased donors. All this good stuff is available under Center and OPO-Specific Reports. From this link, you can compare every transplant center in the country on a specific measure (such as patient survival) or dig into a specific center and get all the information on it. It's updated every six months.

The most intelligent aspect of the data from the SRTR is that it compares each center's data to "expected" results based on national averages adjusted for characteristics of the center's patients. Therefore, if a center reports information about their patients that makes success less likely, the expected values are lower. If their results are lower still, it's not likely to be due to the patient mix. Of course, people can debate the validity of the methods, but the thoroughness and uniformity of it make it seem pretty fair.

Volume Data

The SRTR provides great statistical measures, but how many transplants a center does is almost as important. Is an organ transplant a rare event for the hospital, an occasional case, or an every-other-day thing? Beyond the total number, many patients are curious if the center has experience with their specific situation. For example, does a center do a significant number of pediatric transplants? Have they done many transplants in patients with a certain diagnosis? Do they perform rarer procedures such as multiple organ transplants or living donor transplants for organs other than the kidney?

All of this information can be found from the OPTN (Organ Procurement and Transplantation Network) Data Reports. These data are updated more frequently and go into more depth than the SRTR data, in exchange for not providing analysis or comparison, just pure numbers. Specific transplant centers can be looked up through a menu similar to the SRTR site (using a map by state), and information about the donors, recipients, and waiting list at that center is all available. To compare transplant centers around the country for certain variables (say, the number of pediatric kidney transplants performed in the past two years), the Build Advanced Report feature is especially useful. As long as a report row is set to "Transplant Center", you can compare every transplant center in the country on one table.

Beyond The Numbers

Much of the "quality" of a transplant center can't be captured in numbers. The qualification of the staff, the facilities, the dedication of the institution to transplantation, and the personability and attitude of the program towards its patients are vital to every patient's experience. Even news reports of substandard centers almost always discuss the personal aspects of the center that contributed to the problems. Unfortunately, this information is hard to capture. Investigative reporting is one method, but tends to cover only especially good or especially bad cases. The Internet can come in useful here as well--many people write blogs about their transplant experience, providing very personal insights into the program where they're treated. The blogroll on this page identifies specific centers, so is a place to start to hear about a program from the personal side.

I'm wondering if profiles of individual transplant centers would be useful here at Transplant Headquarters, maybe a "Center of the Month" feature. I could describe a center's history, the backgrounds of the staff, any niches in transplantation that they're especially noted for, and any good or bad news reports. I've been a patient at three or four transplant centers, and had family members or close friends at another three or four, so my personal experience is a drop in the bucket of the number of centers out there. The key would be the comments section, where I hope those with firsthand experience could share it for the benefit of those at the beginning of their journey in transplantation. Good or bad, identified or anonymous, it could be a helpful way to learn more about centers--things that aren't captured in the numbers, that may not be good or bad enough to capture media attention, but may shape an individual's experience, or just be good to know. Let me know what you think...

7 comments:

TC said...

Wow, thanks for that info and I especially like the link to the SRTR. I'll be linking it to my site.

Paul Levy said...

Great site. I have linked it to mine.

Selina said...

Keep up the good work.

DCPatient said...

Thank you for putting this site together. I appreciate your understanding of the number of factors that go into making a "quality" transplant center and the aggregation of tx blogs. Please keep up the great work.

Anonymous said...

The scientific registry of transplant recipients referenced and linked above is now located at www.srtr.org

Anonymous said...

Thanks for the info! Recently transplanted and moved so I am looking for a transplant doctor in the area for follow up care. Very helpful.

isabella said...

You are a GOD!!!! Thank you so much!! I have already had a kidney transplant( it is still perfect) I am now going to have to have a liver transplant. The transplant center where i received the kidney got all the stats right...yet patient care and post help; staff unavailability and very poor care or concern followed. I am taking the time to look into the CORE of transplant centers as the quality of care and kindness is ESSENTIAL to healing. I have hope that my research will pay off. I know may people who would welcome and REVEL in the idea of having "profiles" of transplant centers....and to know they HAVE A CHOICE! If people all contributed it would be a LIFE SAVER in so may ways....

Bless you....Isabella