Improvements in survival after delisting without transplant signal potential data quality issue

Knowing the fate of patients removed from waiting lists without transplant is critical for evaluating the equity and efficiency of the US transplant system, but transplant centers are not required to report deaths after delisting. Our aim was to evaluate changes in death risk for adult transplant candidates removed for deteriorated conditions over 2 decades using data from the Scientific Registry of Transplant Recipients. From 2003 through 2025, there were 93 571 candidates delisted for deteriorated condition. Using all available death data between 2015 and 2024, the recorded 1-year death risk after removal decreased 27%, 31%, and 5% for heart, liver, and lung candidates (P < .001, P < .001, and P = .18, respectively). These trends were not explained by risk adjustment for clinical characteristics in the delisted population. In contrast, recorded death risk for delisted kidney candidates remained stable, likely due to federal death data sharing on patients with end-stage renal disease, as did waitlist and posttransplant deaths, likely due to transplant center death reporting. Our findings suggest the national transplant database is overly reliant on incomplete Social Security national death records after delisting, and the observed decrease in mortality is artifactual. These findings have implications beyond transplant for all researchers and policymakers using Social Security death data.