Mind the Gap! Working Toward Gender Equity in Pediatric and Congenital Heart Disease: Present and Future.

Evidence from medicine and other fields has shown that gender diversity results in better decision making and outcomes. The incoming workforce of congenital heart specialists (especially in pediatric cardiology) appears to be more gender balanced, but past studies have shown many inequities. Gender-associated differences in leadership positions, opportunities presented for academic advancement, and recognition for academic contributions to the field persist. In addition, compensation packages remain disparate if evaluated based on gender with equivalent experience and expertise. This review explores these inequities and has suggested individual and institutional changes that could be made to recruit and retain women, monitor the climate of the institution, and identify and eliminate bias in areas like salary and promotions.

Lifetime Burden of Adult Congenital Heart Disease in the USA Using a Microsimulation Model.

Congenital heart defects (CHD) represent a growing burden of illness among adults. We estimated the lifetime health, education, labor, and social outcomes of adults with CHD in the USA using the Future Adult Model, a dynamic microsimulation model that has been used to study the lifetime impacts of a variety of chronic diseases. We simulated a cohort of adult heads of households > 25 years old derived from the Panel Survey of Income Dynamics who reported a childhood heart problem as a proxy for CHD and calculated life expectancy, disability-free and quality-adjusted life years, lifetime earnings, education attainment, employment, development of chronic disease, medical spending, and disability insurance claiming status. Total burden of disease was estimated by comparing to a healthy cohort with no childhood heart problem. Eighty-seven individuals reporting a childhood heart problem were identified from the PSID and were used to generate the synthetic cohort simulated in the model. Life expectancy, disability-free, quality-adjusted, and discounted quality-adjusted life years were an average 4.6, 6.7, 5.3, and 1.4 years lower than in healthy adults. Lung disease, cancer, and severe mental distress were more common compared to healthy individuals. The CHD cohort earned $237,800 less in lifetime earnings and incurred higher average total medical spend by $66,600 compared to healthy individuals. Compared to healthy adults, the total burden of CHD is over $500K per adult. Despite being among the healthiest adults with CHD, there are significant decrements in life expectancy, employment, and lifetime earnings, with concomitant increases in medical spend.

Impact of Confounding on Cost, Survival, and Length-of-Stay Outcomes for Neonates with Hypoplastic Left Heart Syndrome Undergoing Stage 1 Palliation Surgery.

The objective of this analysis was to update trends in LOS and costs by survivorship and ECMO use among neonates with hypoplastic left heart syndrome (HLHS) undergoing stage 1 palliation surgery using 2016 data from the Healthcare Cost and Utilization Project Kids' Inpatient Database. We identified neonates ≤ 28 days old with HLHS undergoing Stage 1 surgery, defined as a Norwood procedure with modified Blalock-Taussig (BT) shunt, Sano modification, or both. Multivariable regression with year random effects was used to compare LOS and costs by hospital region, case volume, survivorship, and ECMO vs. no ECMO. An E-value analysis, an approach for conducting sensitivity analysis for unmeasured confounding, was performed to determine if unmeasured confounding contributed to the observed effects. Significant differences in total costs, LOS, and mortality were noted by hospital region, ECMO use, and sub-analyses of case volume. However, other than ECMO use and mortality, the maximum E-value confidence interval bound was 1.71, suggesting that these differences would disappear with an unmeasured confounder 1.71 times more associated with both the outcome and exposure (e.g., socioeconomic factors, environment, etc.) Our findings confirm previous literature demonstrating significant resource utilization among Norwood patients, particularly those undergoing ECMO use. Based on our E-value analysis, differences by hospital region and case volume can be explained by moderate unobserved confounding, rather than a reflection of the quality of care provided. Future analyses on surgical quality must account for unobserved factors to provide meaningful information for quality improvement.

Association of WIC Participation and Growth and Developmental Outcomes in High-Risk Infants.

The objective of this study was to describe the association of enrollment in the Special Supplemental Nutrition Program for Women, Infants and Children (WIC), the Supplemental Nutrition Assistance Program (SNAP), and infant growth and neurodevelopmental outcomes. Z scores and Bayley Scales of Infant and Toddler Development-Third Edition (Bayley-III) and Vineland Adaptive/Behavior Scale-II (VABS-II) scores represented primary outcomes. We conducted bivariate analyses and linear regression. Children who were enrolled in WIC or WIC/SNAP had weight z scores U (95% confidence interval [CI]) that were 1.32 (0.42-2.21) or 1.19 (0.16-2.23) units higher. Enrollment in WIC or WIC/SNAP was associated with a higher score (95% CI) of 11.7 U (1.2-22.2 U) or 11.5 (0.1-22.9) for Bayley-III cognitive score and 10.1 U (1.9-19.1 U) or 10.3 (0.9-19.7) for the VABS-II composite score. These findings support increased advocacy for participation in WIC or WIC/SNAP for families with high-risk infants.

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study.

BACKGROUND: We have limited information on families' experiences during transition and after discharge from the neonatal intensive care unit. METHODS: Open-ended semi-structured interviews were conducted with English or Spanish- speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. RESULTS: Twenty-one participants completed the study. The infant's median (IQR) birth weight was 1750 (1305, 2641) grams; 71% were Hispanic and 10% were Black non-Hispanic; 62% reported living in a neighborhood with 3-4th quartile economic hardship. All were classified as having chronic disease per the Pediatric Medical Complexity Algorithm and 67% had medical complexity. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to support transition centered on the parent-child role and parent self-efficacy. The challenges were: (1) comparison to normal babies, (2) caregiver mental health, (3) need for information. Ideas to support transition included, (1) support systems, (2) interventions using mobile health technology (3) improved communication to the primary care provider and (4) information regarding financial assistance programs. Specific subthemes differed in frequency counts between infants with and without medical complexity. CONCLUSIONS: Families often compare their preterm or high-risk infant to their peers and mothers feel great anxiety and stress. However, families often found hope and resilience in peer support and cited that in addition to information needs, interventions using mobile health technology and transition and financial systems could better support families after discharge.

Inpatient admissions and costs of congenital heart disease from adolescence to young adulthood.

BACKGROUND: Health care utilization patterns and associated costs of congenital heart disease (CHD) in young adulthood are not well understood. METHODS: California State Inpatient Databases 2005 to 2009 were used to conduct a retrospective study on inpatient admissions of CHD patients 10 to 29 years old (n = 7,419) and of all patients of the same age (n = 1,195,233). RESULTS: Compared with all patients, annual admission costs of CHD patients monotonically decreased, from $13.9 million at age 10 to 14 years to $7.2 million at age 25 to 29 years, which were due to lower costs per admission and somewhat fewer annual hospitalizations. Admissions from the emergency department in CHD patients increased with age regardless of insurance status: at age 25 to 29 years, 62% of admissions with public insurance, 43% with private insurance, and 78% with no insurance were admitted from the emergency department. Cardiac surgery, catheterization, and electrophysiologic study admissions decreased with age in CHD patients, whereas admissions due to arrhythmia and congestive heart failures became more prevalent. Results from multivariate linear regression in CHD patients showed that cardiac surgery was the most costly factor, associated with $29,543 more in costs per admission, followed by the use of a children's hospital, at $10,533. Factors predicting lower costs included female gender, low-complexity CHD, and shorter stay, all P < .001. CONCLUSIONS: Compared with adolescents, young adults with CHD use fewer resources because the natural history of CHD results in fewer surgical admissions and more frequent but less expensive medical admissions.

Hospital costs and inpatient mortality among children undergoing surgery for congenital heart disease.

OBJECTIVE: To determine the association between hospital costs and risk-adjusted inpatient mortality among children undergoing surgery for congenital heart disease (CHD) in U.S. acute-care hospitals. DATA SOURCES/STUDY SETTINGS: Retrospective cohort study of 35,446 children in 2003, 2006, and 2009 Kids' Inpatient Database (KID). STUDY DESIGN: Cross-sectional logistic regression of risk-adjusted inpatient mortality and hospital costs, adjusting for a variety of patient-, hospital-, and community-level confounders. DATA COLLECTION/EXTRACTION METHODS: We identified relevant discharges in the KID using the AHRQ Pediatric Quality Indicator for pediatric heart surgery mortality, and linked these records to hospital characteristics from American Hospital Association Surveys and community characteristics from the Census. PRINCIPAL FINDINGS: Children undergoing CHD surgery in higher cost hospitals had lower risk-adjusted inpatient mortality (p=.002). An increase from the 25th percentile of treatment costs to the 75th percentile was associated with a 13.6 percent reduction in risk-adjusted mortality. CONCLUSIONS: Greater hospital costs are associated with lower risk-adjusted inpatient mortality for children undergoing CHD surgery. The specific mechanisms by which greater costs improve mortality merit further exploration.