Pediatric Transplantation. 2019;23:e13537. wileyonlinelibrary.com/journal/petr
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1 of 8
https://doi.org/10.1111/petr.13537
© 2019 Wiley Periodicals, Inc.
Received: 11 April 2019
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Revised: 3 June 2019
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Accepted: 11 June 2019
DOI: 10.1111/petr.13537
COMMENTARY
Barriers to ideal outcomes after pediatric liver transplantation
Vicky Lee Ng
1
| George V. Mazariegos
2
| Beau Kelly
3
| Simon Horslen
4
|
Sue V. McDiarmid
5
| John C. Magee
6
| Kathleen M. Loomes
7
| Ryan T. Fischer
8
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Shikha S. Sundaram
9
| Jennifer C. Lai
10
| Helen S. Te
11
| John C. Bucuvalas
12
1
Division of Pediatric Gastroenterology, Hepatology and Nutrition, Transplant and Regenerative Medicine Center, The Hospital for Sick Children,
University of Toronto, Toronto, Ontario, Canada
2
Hillman Center for Pediatric Transplantation, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania
3
Division of Surgery, DCI Donor Services, Sacramento, California
4
Department of Pediatrics, University of Washington, Seattle, Washington
5
David Geffen School of Medicine, University of California, Los Angeles, California, USA
6
Department of Surgery, University of Michigan Medical School, Ann Arbor, Michigan
7
Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine,
Philadelphia, Pennsylvania
8
Division of Gastroenterology, Hepatology and Nutrition, Children’s Mercy Hospital, University of Missouri‐Kansas City School of Medicine, Kansas City,
Missouri
9
Pediatrics, Gastroenterology, Hepatology and Nutrition, Children’s Hospital Colorado, University of Colorado School of Medicine, Aurora, Colorado
10
Division of Gastroenterology/Hepatology, Department of Medicine, University of California, San Francisco, San Francisco, California
11
Adult Liver Transplant Program, University of Chicago Medicine, Chicago, Illinois
12
Mount Sinai Kravis Childrens Hospital and Recanati/Miller Transplant Institute, New York City, New York
Abbreviations: AASLD, American Association for the Study of Liver Diseases; AST, American Society of Transplantation; DDLT, deceased donor liver transplantation; FTR, failure to
rescue; HRQOL, Health related Quality of Life; LDLT, living donor liver transplantation; LICOP, liver and intestinal community of practice; LT, liver transplantation; MLVI, Medication
Level Variability Index; NASPGHAN, North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition; NSER, non‐standard exception requests; PCOP, pediatric
community of practice; PELD, pediatric end‐stage liver disease; PeLTQL, pediatric liver transplant quality of life; PICU, pediatric intensive care unit; PRO, patient‐reported outcomes;
PROM, Patient Reported Outcome Measure; PTLD, post‐transplant lymphoproliferative disease; SNEPT, Starzl Network for Excellence in Pediatric Transplantation; SPLIT, Society of
Pediatric Liver Transplant; SRTR, Scientific Registry of Transplant Recipients.
Correspondence
Vicky Lee Ng, Division of Pediatric
Gastroenterology, Hepatology and
Nutrition, Transplant and Regenerative
Medicine Center, The Hospital for Sick
Children, University of Toronto, Toronto,
ON, Canada.
Email: vicky.ng@sickkids.ca
Funding information
This study was funded in part by NIH
K23AG048337 (Lai), NIH R01AG059183
(Lai). These funding agencies played no role
in the analysis of the data or the preparation
of this manuscript. Its contents are solely
the responsibility of the authors and do not
necessarily represent the official views of
the NIH.
Abstract
Long‐term survival for children who undergo LT is now the rule rather than the ex‐
ception. However, a focus on the outcome of patient or graft survival rates alone pro‐
vides an incomplete and limited view of life for patients who undergo LT as an infant,
child, or teen. The paradigm has now appropriately shifted to opportunities focused
on our overarching goals of “surviving and thriving” with long‐term allograft health,
freedom of complications from long‐term immunosuppression, self‐reported well‐
being, and global functional health. Experts within the liver transplant community
highlight clinical gaps and potential barriers at each of the pretransplant, intra‐op‐
erative, early‐, medium‐, and long‐term post‐transplant stages toward these broader
mandates. Strategies including clinical research, innovation, and quality improvement
targeting both traditional as well as PRO are outlined and, if successfully leveraged
and conducted, would improve outcomes for recipients of pediatric LT.