Pediatric Transplantation Committee Fall 2018

Board Approved Projects Summary Implementation Status Pediatric Transplantation Training & Experience Requirements Established training and experience requirements for key personnel at pediatric heart, liver, and kidney transplant programs Anticipated application due date no sooner than Q2 2019 Full implementation TBD Members performing pediatric transplants should carefully consider the requirements against their case experience to ensure they meet or exceed the minimum qualifications. The Board passed the pediatric transplantation training and experience bylaws proposal at the December 2015 Board meeting. The delayed implementation gives pediatric transplant programs enough time to either ensure their key personnel are qualified, or recruit a qualified primary transplant physician or surgeon. Any program that has listed at least one pediatric candidate in the last five years will receive an application. Applications from your transplant program are targeted for Q2 2019. Full implementation of the training and experience requirements will follow. The MPSC will review application submitted to the OPTN during the months that follow. The OPTN will notify the transplant hospitals well before they send them the applications. Members performing pediatric transplants should carefully consider the requirements against their case experience to ensure they meet or exceed the minimum qualifications. You can find additional details in the policy notice - http://optn.transplant.hrsa.gov/media/1224/policy_notice_12-2015.pdf (p 163)

Board Approved Projects Summary Implementation Status Revise Pediatric Emergency Membership Exception Outlines the requirements for an adult heart or liver programs to register a candidate less than 18 years old. Simultaneous with Pediatric Bylaws proposal In December 2017, the Board approved amendments to the Pediatric Emergency Membership exceptions for heart and liver transplant programs. These exceptions outline when an adult heart or liver transplant program can register a candidate less than 18 years old. Implementation will be in 2019 in tandem with the detailed training and experience requirements for key personnel at pediatric transplant programs. The OPTN will notify transplant hospitals well before they send them the applications.

Public Comment Project Summary Status Tracking Pediatric Transplant Outcomes Following Transition to Adult Care Inconsistent transfer practices for pediatric transplant recipients to adult programs for post-transplant care Project will create guidance for recipient follow-up after transfer Public comment Board – December 2019 Pediatric heart, lung, and liver transplant recipients are often transferred to adult transplant programs for post-transplant care when the recipients turn 18 years old. This transfer practice is inconsistent for pediatric kidney transplant recipients. Payers, and to some degree a recipient's geographic location, influence where a pediatric kidney recipient receives post transplant follow-up care. If this follow-up care is performed by a non-OPTN affiliated nephrologist, the transplanting hospital often reports this recipient as "lost to follow-up" to the OPTN due to the difficulty obtaining information or the inability to contact the recipient (or provider). This "lost to follow-up" classification for pediatric recipients negatively impacts true understanding of graft and patient survival. Long term follow-up data is vital to understanding post-transplant survival. The Pediatric Committee is developing guidance for transplant programs on effective practices for transition and transfer of a recipient to an adult transplant program. This proposal is out for public comment now. The target for consideration by the Board is December 2018.

Project in-flight Project Summary Status Reduce Pediatric Liver Waitlist Mortality Examining issues of extended waiting times and waiting list mortality of very young pediatric liver candidates. Identified solution requires simulation modeling by SRTR Ongoing collaboration with Liver & Intestine Committee A Subcommittee of pediatric liver transplant specialists have examined the problems of extended waiting times and waiting list mortality facing pediatric liver transplant candidates, especially very young candidates. Discussions on this proposal are ongoing with members of the OPTN/UNOS Liver and Intestine Committee. The Subcommittee feels one potential solution is to move liver candidates less than 18 years old higher in the liver allocation sequence and prioritize those pediatric candidates most at risk of death. SRTR will need to perform Liver Simulation Allocation Modeling (LSAM) to assess what approach may be optimal. This project was approved by the OPTN/UNOS Executive Committee in February 2018.

Questions? George Mazariegos, M.D. Committee Chair george.mazariegos@chp.edu Christopher. L. Wholley, M.S.A. Committee Liaison christopher.wholley@unos.org