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Living in Limbo: Survival After Removal from the Kidney Transplant Waitlist
*Claire Sokas1, *Zara Cooper1, Ali Salim1, *James Rodrigue2, *Joel Adler1
1Brigham & Women's Hospital, Boston, MA;2Beth Israel Deaconess Medical Center, Boston, MA

Objective: While kidney transplantation is optimal for many patients, available organs do not meed demand. Little is known about outcomes of patients who are delisted (removed from the waitlist) and unable to benefit from transplant.
Design: Retrospective cohort study
Setting: Registry data from United States Renal Data SystemPatients: Patients >18 years who were listed for deceased donor kidney transplant and subsequently removed from the waitlist. Patients were excluded if removal reason was transplant, death or transfer.
Main Outcome Measures: Overall survival
Results: 57,316 patients were delisted between 2000-2018. The median time on the waitlist was 3.1 years; average age was 58.9 years. Half of delisted patients were white, 60% were male and 2.6% had a previous transplant. The most common reasons cited for delisting were “too sick to transplant” (50%) and “other” (50%, no further detail available). At end of follow-up, 56% of patients were deceased with a median time-to-death of 2.7 years. The median survival of patients delisted for being “too sick” was 2.6 years vs. 6.1 years for “other” patients (p<0.001, Figure). In adjusted survival analysis, “other” patients exhibited better overall survival than “too sick” (HR 0.54, p<0.00) and black patients exhibited better overall survival than white patients (HR 0.85, p<0.001).
Conclusions: Patients removed from the kidney transplant waitlist, no matter the reason, live a surprisingly long time. As median kidney survival after transplant is 10 years, further exploration is needed to better understand the risks and benefits of remaining on the waitlist after accumulating significant waittime.


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