Pediatric Transplantation Committee Fall 2017

Board Approved Projects Summary Implementation Status Pediatric Transplantation Training & Experience Established training and experience requirements for key personnel at pediatric heart, liver, and kidney transplant programs A separate project addresses concerns with the Emergency Membership Exception pathway for heart and liver transplant programs. Currently out for public comment. No sooner than 2019 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. The initial implementation plan was no sooner than December 2018. After further analysis, this implementation timeline needs to be modified. Implementation will likely be in 2019 due to significant UNOS IT programming, the U.S. Office of Management and Budget (OMB) required review of application forms, and UNOS review of all submitted applications. UNOS will notify the transplant hospitals well before they send them the applications. The OPTN/UNOS Membership and Professional Standards Committee (MPSC) will be reviewing all applications. Please call UNOS if you have questions about the application process or membership requirements. You can find additional details in the policy notice - http://optn.transplant.hrsa.gov/media/1224/policy_notice_12-2015.pdf (p 163)

Future Projects 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 Target for public comment January 2018 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 transition 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 intends to develop guidance for transplant programs on best practices for following a recipient after he/she is transferred to an adult transplant program. The target for public comment is January 2018.

Future Projects 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 Project on hold until Liver Committee resolves distribution efforts On hold A Working Group has examined the problems of extended waiting times and waiting list mortality facing pediatric liver transplant candidates, especially very young candidates. They identified a high level solution to move all 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). This project is “on-hold” pending the Liver & Intestine Committee’s efforts on Enhancing Liver Distribution.

Questions? William Mahle, M.D. Committee Chair mahlew@kidsheart.com Christopher. L. Wholley, M.S.A. Committee Liaison christopher.wholley@unos.org