Health Care Policy and Congenital Heart Disease: 2020 Focus on Our 2030 Future

Abstract

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.

Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association

“…Pediatric patients with AHD are exposed to differential access to care on the basis of socioeconomic and systemic structural barriers. 174,175 Increased postoperative mortality and illness severity, decreased ECMO use, and lower functional outcomes have been demonstrated in children with pediatric HD who are from historically underrepresented racial and ethnic groups. [176][177][178][179] This suggests that underrepresented populations are experiencing disease burdens that could benefit from the support of palliative care services.…”

“…There is a vital need to understand effects or impediments of structural and social determinants of health specific to pain, symptom, QOL interventions, and palliative care team consultation and to work collaboratively, in partnership with people from underrepresented racial and ethnic groups, to redress these injustices in pediatric cardiac care delivery. 2,15,175,182…”

“…There is a vital need to understand effects or impediments of structural and social determinants of health specific to pain, symptom, QOL interventions, and palliative care team consultation and to work collaboratively, in partnership with people from underrepresented racial and ethnic groups, to redress these injustices in pediatric cardiac care delivery. 2,15,175,182 Considerations for Clinical Practice • Inequity issues are observable in all facets of health care and should be studied further to understand the effects in palliative care delivery for the AHD population.…”

The effect of geographic origin and destination on congenital heart disease outcomes: a retrospective cohort study

“…Case volume information was not available for STS-nr facilities. In a 2020 policy review of CHD, authors describe a known relationship between center volume and patient outcomes [ 19 ]. However, this relationship is nuanced and likely reflects a larger picture of insurance programs, support systems, and individual clinician expertise [ 20 ].…”

Identification and functional analysis of variants of MYH6 gene promoter in isolated ventricular septal defects

“…Congenital heart defects (CHDs), characterized by structural and conduction abnormalities, are congenital anomalies that pose a serious threat to the health of children's lives and represent the most prevalent congenital birth defects, accounting for approximately one-third of all congenital defects [ 1 , 2 ]. CHDs affects 9–18 out of every 1000 live births [ 3 ], and nearly 300,000 people die of congenital heart disease each year, 70% of whom are children under the age of one [ 4 ].…”