A coordinated approach to improving pediatric heart transplant waitlist outcomes: A summary of the ACTION November 2019 waitlist outcomes committee meeting

Abstract

The number of children needing heart transplantation (HT) continues to rise. 1 Although improvements in heart failure (HF) therapy, particularly durable mechanical support, have improved waitlist outcomes, much work remains to be done. Firstly, the number of children who die while waiting for a suitable donor organ remains high. Currently, around 13% children and 25% of infants on the HT waitlist will not survive to transplantation. 2 Among those who do survive to transplant, waitlist characteristics, including waitlist duration, available mechanical support options, and renal injury all contribute to post-transplant outcomes. 3-8 The waitlist phase of care has received considerable attention recently, including the recent publication of an International Society for Heart & Lung Transplantation (ISHLT) consensus statement on donor organ acceptability and other important papers. 9-19 Given that the unacceptably high waitlist mortality rate is likely a result of cumulative effect of several inefficiencies in care along the heart failure-transplant trajectory, multiple interventions at various

Deceased donor organ allocation in pediatric transplantation: A historical narrative

“…However, a careful study of the short‐term results of this policy found that there was no decrease in overall waitlist mortality, including a lack of improvement in the waitlist mortality for Status 1A candidates with congenital heart disease 47,48 . A number of modifications have been proposed and are under consideration 48,49 …”

“…47,48 A number of modifications have been proposed and are under consideration. 48,49 Internationally, pediatric waitlist duration and mortality vary by country. By comparison, in the United States, the median waitlist duration for the most urgent patients is 2-3 months; in Brazil, it is 6 months; and in Japan, it is >1000 days.…”

Learning networks in pediatric heart failure and transplantation

“…A non-exhaustive list of examples includes the following: a project to increase the rate of hospital discharge in patients on discharge-eligible continuous-flow VADs 33 ; an initiative to increase volume and parent/provider satisfaction with telemedicine visits necessitated by the COVID-19 pandemic; assessment of VAD utilization from the perspective of healthcare resource expenditures; construction of standardized rounding and discharge tools for patients hospitalized with HF, a study of patient-and parentreported outcomes (PROs) in VAD recipients; and educational modules and forums geared toward increasing donor heart utilization. 34 Common to all of these initiatives is the involvement of a multidisciplinary team including physicians, nurses, psychologists, QI spe- In a learning network, rapid dissemination of knowledge, with a particular focus on real-time release of data, is a primary aim. For ACTION, an example of this can be found in the analysis and publication of results pertaining to the use of the HeartMate 3 (HM3) ® intracorporeal continuous-flow device at ACTION centers.…”

Optimal Donor Allograft Function: The Search for the Lowest Acceptable Donor Left Ventricular Ejection Fraction in Pediatric Heart Transplantation

“…2 Modern technologies and healthcare innovations have allowed children to live longer while awaiting a suitable heart. 3,4 Despite these advancements, there continues to be an unacceptably high rate of pretransplant mortality. 5 The Organ Procurement and Transplant Network/Scientific Registry of Transplant Recipients 2019 Annual Data Report show that 10% of pediatric transplant candidates died while awaiting transplant over a 3-y period.…”