Improvements in Survival after Delisting without Transplant Signal Potential Data Quality Issue

Area of Science:

• Transplantation research
• Public health data analysis
• Medical system evaluation

Background:

• Accurate tracking of patient outcomes after removal from transplant waiting lists is essential for assessing the US transplant system's equity and efficiency.
• Transplant centers are not mandated to report deaths occurring after a patient is delisted.
• This lack of reporting creates significant data gaps regarding patient mortality post-delisting.

Purpose of the Study:

• To analyze trends in death risk for adult transplant candidates removed from waiting lists due to deteriorating health over a 20-year period.
• To evaluate the reliability of national transplant databases in capturing post-delisting mortality.
• To identify potential biases in transplant system performance metrics due to data limitations.

Main Methods:

• Utilized data from the Scientific Registry of Transplant Recipients for 93,571 adult candidates delisted for deteriorated condition between 2003 and 2025.
• Analyzed recorded 1-year death risk after removal for heart, liver, lung, and kidney candidates from 2015 to 2024.
• Assessed trends in relation to clinical characteristics and compared with federal death data sharing and transplant center reporting.

Main Results:

• Observed a statistically significant decrease in recorded 1-year death risk post-removal for heart (27%) and liver (31%) candidates, but not lung (5%).
• Recorded death risk for delisted kidney candidates remained stable, potentially due to better federal death data integration for end-stage renal disease.
• The study suggests the observed mortality decrease is artifactual, stemming from over-reliance on incomplete Social Security death records.

Conclusions:

• The national transplant database's reliance on incomplete Social Security death records after delisting inflates the perceived improvement in survival.
• Observed decreases in mortality for heart, liver, and lung candidates are likely artifacts, not reflective of genuine survival improvements.
• Findings highlight critical data limitations impacting transplant system evaluation and have broader implications for using Social Security death data in research and policy.