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

Katherine Cheng, Sandy Feng, John C. Bucuvalas, Josh Levitsky, Emily R Perito

Research output: Contribution to journalArticlepeer-review

3 Scopus citations


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 to 2018, this analysis seeks to determine if long-term follow-up and outcome data are complete for pediatric LT recipients age 0 to 12 years who survive at least 1 year post-LT without graft loss (n = 9309). Of the 7948 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 who 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.

Original languageEnglish
Pages (from-to)1182-1190
Number of pages9
JournalAmerican Journal of Transplantation
Issue number4
StatePublished - Apr 2022


  • Organ Procurement and Transplantation Network (OPTN)
  • clinical research/practice
  • health services and outcomes research
  • liver disease
  • liver transplantation/hepatology
  • organ transplantation in general
  • patient survival
  • pediatrics
  • registry/registry analysis
  • transitional care


Dive into the research topics of 'Not everything that counts can be counted: Tracking long-term outcomes in pediatric liver transplant recipients'. Together they form a unique fingerprint.

Cite this