How accurate are Transplant Center-Reported Survival Data?

Many people have wondered about the accuracy of post-transplant survival data submitted to the OPTN by individual transplant centers. By using publicly available mortality data from the Social Security Death Master File (SSDMF), SRTR analyses show that for the vast majority of centers, these self-reported survival data are extremely accurate.

We reached this conclusion by comparing centers' survival rates using self-reported data with those calculated using both center-reported data and SSDMF data. Summaries of the differences between center-reported data alone versus center-reported data supplemented with SSDMF survival data are shown in each of the following sets of organ-specific tables.

[Heart-Lung] [Heart] [Intestine] [Kidney] [Kidney-Pancreas] [Liver] [Lung] [Pancreas]

Details and Plans for Future Reporting

In prior iterations of the Program-Specific Reports, graft and patient outcomes were computed for each transplant program based only upon patient follow-up reported by the transplant programs themselves. Beginning with the July 2002 update of the OPO- and Transplant Program-Specific Reports, post-transplant outcomes statistics will incorporate supplemental survival data from the Social Security Death Master File (SSDMF). Incorporation of SSDMF survival data led to only minor changes in computed outcomes measures for most programs, and many survival rates actually improve. (It is possible to improve because as the SSDMF adds ascertainment of deaths, it also adds time of survival for patients of whom the transplant center has lost track.) .

Previously expressed concerns that programs with low reporting percentages might actually have much worse outcomes if more complete reporting were available appear to have been incorrect, with very few exceptions. While incomplete reporting of patient follow-up has adverse effects upon our confidence in the data, it appears that concerns about widespread systematic abuse of the reporting system were unfounded. Efforts are being made to improve the reporting of patient follow-up at those facilities with incomplete reporting of patient data. It is essential that the transplant programs continue to provide patient follow-up since other sources of data are also incomplete. It is through the combination of several data sources that nearly complete data can be ascertained.