RESUMO
Achieving health equity in populations with congenital heart disease (CHD) requires recognizing existing disparities throughout the lifespan that negatively and disproportionately impact specific groups of individuals. These disparities occur at individual, institutional, or system levels and often result in increased morbidity and mortality for marginalized or racially minoritized populations (population subgroups (e.g., ethnic, racial, social, religious) with differential power compared to those deemed to hold the majority power in the population). Creating actionable strategies and solutions to address these health disparities in patients with CHD requires critically examining multilevel factors and health policies that continue to drive health inequities, including varying social determinants of health (SDOH), systemic inequities, and structural racism. In this comprehensive review article, we focus on health equity solutions and health policy considerations for minoritized and marginalized populations with CHD throughout their lifespan in the United States. We review unique challenges that these populations may face and strategies for mitigating disparities in lifelong CHD care. We assess ways to deliver culturally competent CHD care and to help lower-health-literacy populations navigate CHD care. Finally, we review system-level health policies that impact reimbursement and research funding, as well as institutional policies that impact leadership diversity and representation in the workforce.
RESUMO
BACKGROUND: The impact of age and weight on outcomes after the Fontan operation is unclear. Previous analyses have suggested that lower weight-for-age z-score is an important predictor of poor outcome in patients undergoing bidirectional Glenn. We evaluated variation in age, weight, and weight-for-age z-score at Fontan across institutions, and the impact of these variables on postoperative morbidity and mortality. METHODS: Patients in The Society of Thoracic Surgeons Congenital Heart Surgery Database undergoing the Fontan operation (2000 to 2009) were included. Center variation in age, weight, and weight-for-age z-score were described. Multivariable analysis was performed to evaluate the impact of age, weight, and weight-for-age z-score on in-hospital mortality, Fontan failure (combined in-hospital mortality and Fontan takedown/revision), postoperative length of stay, and complications, adjusting for other patient and center factors. RESULTS: A total of 2,747 patients (68 centers) were included: 61% male; 45% right dominant lesions (38% left dominant, 17% undifferentiated). An extracardiac conduit Fontan (versus lateral tunnel) was performed in 63%; 65% were fenestrated. Median age, median weight at Fontan operation, and proportion with weight-for-age z-score less than -2 varied across centers and ranged from 1.7 to 4.8 years, 10.5 to 16.1 kg, and 0% to 30%, respectively. In multivariable analysis, age and weight were not significantly associated with outcome. Weight-for-age z-score less than -2 was associated with increased in-hospital mortality (odds ratio 2.73, 95% confidence interval: 1.09 to 6.86), Fontan failure (odds ratio 2.59, 95% confidence interval: 1.24 to 5.40), and longer length of stay (+1.2 days, 95% confidence interval: 0.1 to 2.4). CONCLUSIONS: Weight-for-age z-score less than -2 is associated with significant morbidity and mortality after the Fontan operation independent of other patient and center characteristics.