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

The number of children needing heart transplantation continues to rise. Although improvements in heart failure therapy, particularly durable mechanical support, have reduced waitlist mortality, the number of children who die while waiting for a suitable donor organ remains unacceptably high. Roughly, 13% of children and 25% of infants on the heart transplant waitlist will not survive to transplantation. With this in mind, the Advanced Cardiac Therapies Improving Outcomes Collaborative Learning Network (ACTION), through its Waitlist Outcomes Committee, convened a 2‐day symposium in Ann Arbor, Michigan, from 2‐3 November 2019, to better understand the factors that contribute to pediatric heart transplant waitlist mortality and to focus future efforts on improving the organ allocation rates for children needing heart transplantation. Using improvement science methodology, the heart failure‐transplant trajectory was broken down into six key steps, after which modes of failure and opportunities for improvement at each step were discussed. As a result, several projects aimed at reducing waitlist mortality were initiated.

[1]  R. Kirk,et al.  A comprehensive strategy in donor acceptance: Impact on pediatric waitlist and heart transplant outcomes. , 2020, Pediatric transplantation.

[2]  C. Granger,et al.  Transplant Center Variability in Organ Offer Acceptance and Mortality Among US Patients on the Heart Transplant Waitlist. , 2020, JAMA cardiology.

[3]  C. Almond,et al.  The Creation of a Pediatric Health Care Learning Network: The ACTION Quality Improvement Collaborative , 2020, ASAIO journal.

[4]  F. Pérez-Villa,et al.  Impact of mechanical circulatory support on survival in pediatric heart transplantation , 2020, Pediatric transplantation.

[5]  A. Dipchand,et al.  Pediatric donor management to optimize donor heart utilization , 2020, Pediatric transplantation.

[6]  A. Dipchand,et al.  Pediatric cardiac waitlist mortality—Still too high , 2020, Pediatric transplantation.

[7]  R. Weintraub,et al.  Review of the impact of donor characteristics on pediatric heart transplant outcomes , 2020, Pediatric transplantation.

[8]  A. Dipchand,et al.  Review of the discard and/or refusal rate of offered donor hearts to pediatric waitlisted candidates , 2020, Pediatric transplantation.

[9]  A. Dipchand,et al.  Accepting pediatric donor hearts: How do we make the best decision? , 2020, Pediatric Transplantation.

[10]  A. Dipchand,et al.  Effects of donor cause of death, ischemia time, inotrope exposure, troponin values, cardiopulmonary resuscitation, electrocardiographic and echocardiographic data on recipient outcomes: A review of the literature , 2020, Pediatric transplantation.

[11]  A. Dipchand,et al.  Review of interactions between high‐risk pediatric heart transplant recipients and marginal donors including utilization of risk score models , 2020, Pediatric transplantation.

[12]  L. Mirea,et al.  Volumetrics and fit assessments for donor to recipient size matching in pediatric heart transplantation: Is it time for a new paradigm? , 2020, Clinical transplantation.

[13]  C. VanderPluym,et al.  Early experience with the HeartMate 3 continuous-flow ventricular assist device in pediatric patients and patients with congenital heart disease: A multicenter registry analysis. , 2020, The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation.

[14]  R. Weintraub,et al.  ISHLT consensus statement on donor organ acceptability and management in pediatric heart transplantation. , 2020, The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation.

[15]  A. Amodeo,et al.  Behavioral economics—A framework for donor organ decision‐making in pediatric heart transplantation , 2020, Pediatric transplantation.

[16]  A. Dipchand,et al.  Patients and their family members prioritize post‐transplant survival over waitlist survival when considering donor hearts for transplantation , 2020, Pediatric transplantation.

[17]  A. Lorts,et al.  Expanding the donor pool for congenital heart disease transplant candidates by implementing 3D imaging‐derived total cardiac volumes , 2019, Pediatric transplantation.

[18]  D. Magnetta,et al.  Impact of the 2016 revision of US Pediatric Heart Allocation Policy on waitlist characteristics and outcomes , 2019, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[19]  B. Meiser,et al.  The International Thoracic Organ Transplant Registry of the International Society for Heart and Lung Transplantation: Twenty-second pediatric heart transplantation report - 2019; Focus theme: Donor and recipient size match. , 2019, The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation.

[20]  B. Meiser,et al.  The International Thoracic Organ Transplant Registry of the International Society for Heart and Lung Transplantation: Thirty-sixth adult lung and heart-lung transplantation Report-2019; Focus theme: Donor and recipient size match. , 2019, The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation.

[21]  A. Lorts,et al.  Optimizing Postcardiac Transplantation Outcomes in Children with Ventricular Assist Devices: How Long Should the Bridge Be? , 2019, ASAIO journal.

[22]  C. VanderPluym,et al.  Collaboration and new data in ACTION: a learning health care system to improve pediatric heart failure and ventricular assist device outcomes. , 2019, Translational pediatrics.

[23]  S. Sutherland,et al.  Renal injury and recovery in pediatric patients after ventricular assist device implantation and cardiac transplant , 2019, Pediatric transplantation.

[24]  A. Dipchand,et al.  Variability in donor selection among pediatric heart transplant providers: Results from an international survey , 2019, Pediatric transplantation.

[25]  K. Maeda,et al.  Commentary: Improving donor size matching in pediatric heart transplantation-Moving beyond body weight. , 2019, The Journal of thoracic and cardiovascular surgery.

[26]  D. Morales,et al.  Time for evidence-based, standardized donor size matching for pediatric heart transplantation. , 2019, The Journal of thoracic and cardiovascular surgery.

[27]  R. Kirk,et al.  Donor organ turn-downs and outcomes after listing for pediatric heart transplant. , 2019, The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation.

[28]  J. Tobias,et al.  Pediatric marginal donor hearts: Trends in US national use, 2005‐2014 , 2018, Pediatric transplantation.

[29]  Stephen E. Muething,et al.  Using a network organisational architecture to support the development of Learning Healthcare Systems , 2018, BMJ Quality & Safety.

[30]  A. Israni,et al.  OPTN/SRTR 2016 Annual Data Report: Lung , 2018, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[31]  A. Israni,et al.  OPTN/SRTR 2016 Annual Data Report: Heart , 2018, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[32]  C. Fraser,et al.  Inferior Outcomes on the Waiting List in Low‐Volume Pediatric Heart Transplant Centers , 2017, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[33]  S. Gidding,et al.  Urgent listing exceptions and outcomes in pediatric heart transplantation: Comparison to standard criteria patients. , 2017, The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation.

[34]  D. Dodd,et al.  Regional variation in the use of 1A status exceptions for pediatric heart transplant candidates: is this equitable? , 2016, Pediatric Transplantation.

[35]  Asma M. Khan,et al.  Donor predictors of allograft utilization for pediatric heart transplantation , 2016, Transplant international : official journal of the European Society for Organ Transplantation.

[36]  D. Dodd,et al.  Is it time for a national pediatric heart review board? , 2016, Clinical transplantation.

[37]  S. Sutherland,et al.  Recovery From Acute Kidney Injury and CKD Following Heart Transplantation in Children, Adolescents, and Young Adults: A Retrospective Cohort Study. , 2016, American journal of kidney diseases : the official journal of the National Kidney Foundation.

[38]  A. Lorts,et al.  Favorable Waitlist and Posttransplant Outcomes in Children and Adolescent Patients Supported With Durable Continuous‐Flow Ventricular Assist Devices , 2016, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[39]  K. Khush,et al.  Donor Predictors of Allograft Use and Recipient Outcomes After Heart Transplantation , 2013, Circulation. Heart failure.

[40]  K. Gauvreau,et al.  Trends in Wait‐List Mortality in Children Listed for Heart Transplantation in the United States: Era Effect Across Racial/Ethnic Groups , 2011, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[41]  B. McCrindle,et al.  Outcomes with ventricular assist device versus extracorporeal membrane oxygenation as a bridge to pediatric heart transplantation. , 2010, Artificial organs.

[42]  Ronald D. Moen,et al.  The Improvement Guide: A Practical Approach to Enhancing Organizational Performance , 1996 .