This ACTION article, published in Pediatric Transplantation, describes the results of ACTION’s November 2019 Waitlist Outcomes Committee (WOC) meeting. The WOC committee used improvement science methodology to develop a six-step heart failure-transplant trajectory that discusses failure and opportunities for improvement at each step. As a result, WOC initiated four projects intended to reduce waitlist mortality.
The four projects span data collection, quality improvement, patient & provider experience, and advocacy. Importantly, we’ve made a lot of progress since this was published in September 2020. For instance, WOC’s recurring, multi-institutional donor decline case review conference kickstarted in June. Several donor‐recipient size matching projects are underway to improve estimations. To improve fairness of UNOS heart allocation system, the committee began developing a consensus document addressing waitlist status exceptions. Lastly, ACTION created a library of free educational materials for patients and providers in collaboration with the Pediatric Heart Transplant Society (PHTS): https://myactioneducation.org/
ACTION leaders from pediatric heart centers across the nation came together to initiate these projects, including Neha Bansal, Seth Hollander, Deipanjan Nandi, Justin Godown, Farhan Zafar, David Rosenthal, Angela Lorts, and Aamir Jeewa. The committee brought together pediatric heart centers across the country: Children’s Hospital at Montefiore, Stanford’s Lucile Packard Children’s Hospital, Nationwide Children’s Hospital, Monroe Carell Jr Children’s Hospital at Vanderbilt, Cincinnati Children’s Hospital Medical Center, and The Hospital for Sick Children.
Hollander SA, Nandi D, Bansal N, Godown J, Zafar F, Rosenthal DN, Lorts A, Jeewa A; ACTION Network. A coordinated approach to improving pediatric heart transplant waitlist outcomes: A summary of the ACTION November 2019 waitlist outcomes committee meeting. Pediatr Transplant. 2020 Sep 28:e13862. doi: 10.1111/petr.13862. Epub ahead of print. PMID: 32985785.