The congenital heart care community faces a myriad of public health issues that act as barriers toward optimum patient outcomes. In this article, we attempt to define advocacy and policy initiatives meant to spotlight and potentially address these challenges. Issues are organized into the following 3 key facets of our community: patient population, health care delivery, and workforce. We discuss the social determinants of health and health care disparities that affect patients in the community that require the attention of policy makers. Furthermore, we highlight the many needs of the growing adults with congenital heart disease and those with comorbidities, highlighting concerns regarding the inequities in access to cardiac care and the need for multidisciplinary care. We also recognize the problems of transparency in outcomes reporting and the promising application of telehealth. Finally, we highlight the training of providers, measures of productivity, diversity in the workforce, and the importance of patient–family centered organizations in advocating for patients. Although all of these issues remain relevant to many subspecialties in medicine, this article attempts to illustrate the unique needs of this population and highlight ways in which to work together to address important opportunities for change in the cardiac care community and beyond. This article provides a framework for policy and advocacy efforts for the next decade.

Advances in pediatric cancer therapies have dramatically improved the likelihood of survival. As survivors are aging, however, we are now understanding that treatment carries a significant risk of cardiovascular toxicity, which can develop immediately, or even many years after completing therapy. Anthracycline derivates are some of the most commonly used agents in pediatric oncology treatment protocols, which have a dose-dependent correlation with the development of cardiac toxicity. As we learn more about the mechanisms of toxicity, we are developing prevention strategies, including improvements in surveillance, to improve early diagnosis of heart disease. Current survivorship surveillance protocols often include screening echocardiograms to evaluate systolic function by measuring the ejection fraction or fractional shortening. However, these measurements alone are not enough to capture early myocardial changes. The use of additional imaging biomarkers, serum biomarkers, electrocardiograms, as well as cholesterol and blood pressure screening, are key to the early detection of cardiomyopathy and cardiovascular disease. Medical treatment strategies are the same as those used for heart failure from other causes, but earlier recognition and implementation can lead to improved long term outcomes.

Introduction: Rejection remains a significant cause of graft loss after heart transplantation. The current prevalence of recurrent rejection and its impact on graft loss after pediatric heart transplantation is unknown. Methods: All pediatric heart transplants between 1/2000-6/2020 in the Pediatric Heart Transplant Society database were included. Rejection was defined as a clinical event determined by biopsy, echocardiogram or clinical findings that resulted in augmentation of immunosuppression. Recurrent rejection was defined as ≥ 2 episodes of rejection after heart transplant. Freedom from recurrent rejection in the early (2000-2009) and current (2010-2020) era were compared. Multiphase parametric hazard modeling was utilized to understand the effects of each additional episode of rejection on graft loss in addition to identifying other risk factors. Results: Of 6342 heart transplants during the study period, 3921 (62%) had 0, 1386 (21%) had 1 and 1035 (17%) had ≥2 rejection episodes. In the current era, recurrent rejection is less frequent [468/4206 (11.1%) vs. 567/2136 (26.5%); p<0.001] (Figure A). Recurrent rejection increased probability of graft loss in both the unadjusted and multivariate adjusted analysis (HR 1.68; 95% CI 1.61-1.75, p<0.001) (Figure B and Table). Other risk factors for graft loss after pediatric HT are outlined in the Table. Conclusions: Currently, recurrent rejection is experienced by 1 in 10 pediatric HT recipients. Each additional episode of rejection post-HT confers an increasing risk for graft loss. Identifying risk factors for recurrent rejection is paramount to improving graft longevity.