https://pubmed.ncbi.nlm.nih.gov/34951518/ Liver transplant

Am J Transplant. 2021 Dec 24.
doi: 10.1111/ajt.16932. Online ahead of print.

Not everything that counts can be counted: Tracking long-term outcomes in pediatric liver transplant recipients

Katherine Cheng 1, Sandy Feng 2, John C Bucuvalas 3, Josh Levitsky 4, Emily R Perito 1 5

Abstract

For pediatric liver transplant (LT) recipients, an ideal outcome is to survive and thrive into adulthood. However, outcomes reporting for all LT recipients typically rely on much shorter-term outcomes, 1-5 years post-LT. Using Organ Procurement and Transplantation Network (OPTN) registry data from 1990-2018, this analysis seeks to determine if long-term follow-up and outcomes data are complete for pediatric LT recipients age 0 to 12 years who survive at least 1 year post-LT without graft loss (n=9,309). Of the 7,948 pediatric transplant recipients who did not die or require re-LT, 1 in 6 was reported as lost to follow-up by their transplant center during long-term follow-up. Rates of lost to follow-up were highest in those transplanted between 1990 and 1999 and increased in early adulthood for all recipients. Almost 10% of pediatric LT recipients that remained in follow-up required relisting for LT. 8% of children remaining in follow-up had graft failure. Lost to follow-up may bias estimates of long-term outcomes, and risk factors for poor outcomes. For those remaining in follow-up, graft failure and death continue to occur in the decades after LT. Continued proactive monitoring, management, and innovations are needed to truly optimize post-LT survival for all children.