Pediatric Transplantation Committee Spring 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 Committee project will address concerns with the Emergency Membership Exception pathway for heart and liver transplant programs. 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 scope of work on this project by UNOS IT, a required review of applications by the U.S. Office of Management and Budget (OMB), and a period of time for review of the applications submitted to the OPTN. UNOS will provide advance notice to the transplant community well before the applications are sent to transplant hospitals. 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)

Projects in Development Summary Status Revisions to Pediatric Emergency Membership Exception Pathway Resolving gaps in Emergency Membership Exception pathway for heart and liver programs. Multidisciplinary work group will collaborate with liver and thoracic committees in Spring 2017 to further develop exception pathway amendments. Active discussions The Board approved the new minimum training and experience requirement for pediatric transplant programs in Dec. 2015. Several Board members asked the MPSC and Pediatric Committees to resolve gaps in the Emergency Membership Exception pathway for heart and liver transplant programs. A working group of MPSC and Pediatric Committee members met several times and agreed on a framework for amendments to the Exception pathway. They plan to collaborate with the Liver & Intestine and Thoracic Committees in Spring 2017 to further develop this proposal. Target for public comment is July 2017 and consideration by the Board in December 2017.

Future Projects Project Summary Status Reduce Pediatric Liver Waitlist Mortality Working group 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 redistricting efforts On hold A Working Group has examined the problems of extended waiting times and waiting list mortality facing pediatric liver candidates, especially very young candidates. The Working Group 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. Liver Simulation Allocation Modeling (LSAM) by SRTR will be required. This project is “on-hold” pending the Liver & Intestine Committee’s efforts on Liver Distribution Redesign Modeling (Re-districting of Regions).

Future Projects Project Summary Status Tracking Pediatric Transplant Outcomes Following Transition to Adult Care Inconsistent transfer of pediatric heart, lung and liver transplant recipients to adult programs for post-transplant care. Strategic Goal Alignment: Goal III Consideration by OPTN/UNOS Policy Oversight Committee (POC) in January 2017 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.

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