The science of assessing the outcomes and improving the quality of the congenital and paediatric cardiac care

Successful outcome in the care of patients with congenital heart disease depends on a comprehensive multidisciplinary team. Surgery is offered for almost every heart defect, despite complexity. Early mortality for cardiac surgery in the neonatal period is ≈10% and beyond infancy is <5%, with 90% to 95% of patients surviving with a good quality of life into the adult years. Advances in imaging have facilitated accurate diagnosis and planning of interventions and surgical procedures. Similarly, advances in the perioperative medical management of patients, particularly with intensive care, has also contributed to improving outcomes. Arrhythmias and heart failure are the most common late complications for the majority of defects, and reoperation for valvar problems is common. Lifelong surveillance for monitoring of recurrent or residual structural heart defects, as well as periodic assessment of cardiac function and arrhythmia monitoring, is essential for all patients. The field of congenital heart surgery is poised to incorporate new innovations such as bioengineered cells and scaffolds that will iteratively move toward bioengineered patches, conduits, valves, and even whole organs.

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“…There are several parameters that have to be followed to minimize interinstitutional variability and report meaningful outcomes 70 :…”

Section: Quality Metricsmentioning

confidence: 99%

Current Interventional and Surgical Management of Congenital Heart Disease

Holst

Said

Nelson

et al. 2017

Circulation Research

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“…Models to predict the need for ECMO and ICU length of stay do exist [ 14 , 23 , 24 ]. These models, however, are not intended specifically for pediatric CHD patients.…”

Section: Discussionmentioning

confidence: 99%

Factors Associated with the Need for, and the Impact of, Extracorporeal Membrane Oxygenation in Children with Congenital Heart Disease during Admissions for Cardiac Surgery

Aiello

Loomba

2017

Children

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Introduction: This study aimed to determine factors associated with the need for extracorporeal membrane oxygenation (ECMO) in children with congenital heart disease (CHD) during admission for cardiac surgery (CS). A secondary aim was to determine how ECMO impacted length, cost, and mortality of the admission. Methods: Data from the Kids’ Inpatient Database (KIDS) were utilized. Admissions with CHD under 18 years of age with cardiac surgery were included. Need for ECMO in these admissions was then identified. Univariate analysis was conducted to compare characteristics between admissions with and without ECMO. Regression analyses were conducted to determine what factors were independently associated with ECMO and whether ECMO independently impacted admission characteristics. Results: A total of 46,176 admissions with CHD and CS were included in the final analysis. Of these, 798 (1.7%) required ECMO. Median age of ECMO admissions was 0.5 years. The following were associated with ECMO: decreased age, heart failure, acute kidney injury, arrhythmia, double outlet right ventricle, atrioventricular septal defect, transposition, Ebstein anomaly, hypoplastic left heart syndrome, common arterial trunk, tetralogy of Fallot, coronary anomaly, valvuloplasty, repair of total anomalous pulmonary venous connection, arterial switch, RV to PA conduit placement, and heart transplant (p < 0.01). ECMO independently increased length of stay by 17.8 days, cost of stay by approximately $415,917, and inpatient mortality 22-fold. Conclusion: Only a small proportion of CHD patients undergoing CS require ECMO, although these patients require increased resource utilization and have high mortality. Specific cardiac lesions, cardiac surgeries, and comorbidities are associated with increased need for ECMO.

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“…There have been continued advances in CHD care, including a dramatic increase in prenatal diagnosis of CHD, a push to prevent preterm and early term deliveries, national collaborative quality initiatives in perioperative care of CHD, and public reporting of many CHD outcomes. [10][11][12][13][14][15][16][17] There has also been increased attention to sex, racial/ethnic, and sociodemographic disparities in care of people affected by CHD across the age spectrum. 18 The objective of our study was to update prior data on temporal trends in mortality related to CHD in the United States by examining mortality over the last 19 years overall, by age and by CHD lesion, to determine if mortality is continuing to decline, and to evaluate if prior disparities noted across race/ethnicity and sex are decreasing.…”

Section: Introductionmentioning

confidence: 99%

US Mortality Due To Congenital Heart Disease Across the Lifespan from 1999-2017 Exposes Persistent Racial/Ethnic Disparities

Lopez

Morris

Tejtel

et al. 2020

Preprint

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Background: Congenital heart disease (CHD) accounts for approximately 40% percent of deaths in United States (US) children with birth defects. Previous US data from 1999-2006 demonstrated an overall decrease in CHD mortality. The objective of our study was to assess current trends in US mortality related to CHD from infancy to adulthood over the last 19 years and determine differences by sex and race/ethnicity. Methods: We conducted an analysis of death certificates from 1999-2017 to calculate annual CHD mortality by age at death, race/ethnicity, and sex. Population estimates used as denominators in mortality rate calculation for infants were based on National Center for Health Statistics live birth data. Mortality rates in individuals >1 year of age utilized US Census Bureau bridged-race estimates as denominators for population estimates. We characterized temporal trends in all-cause mortality, mortality resulting directly due to and related to CHD by age, race/ethnicity, and sex using joinpoint regression. Results: There were 47.7 million deaths with 1 in 814 deaths due to CHD (n=58,599). While all-cause mortality decreased 16.4% across all ages, mortality resulting from CHD declined 39.4% overall. The mean annual decrease in CHD mortality was 2.6%, with the largest decrease for those age >65years. The age-adjusted mortality rate decreased from 1.37 to 0.83 per 100,000. Males had higher mortality due to CHD than females throughout the study, although both sexes declined at a similar rate (~40% overall), with a 3-4% annual decrease between 1999 and 2009, followed by a slower annual decrease of 1.4% through 2017. Mortality resulting from CHD significantly declined among all race/ethnicities studied, although disparities in mortality persisted for non-Hispanic Blacks versus non-Hispanic Whites (mean annual decrease 2.3% versus 2.6%, respectively; age-adjusted mortality rate 1.67 to 1.05 versus 1.35 to 0.80 per 100,000, respectively). Conclusions: While overall US mortality due to CHD has decreased over the last 19 years, disparities in mortality persist for males compared to females and for non-Hispanic Blacks compared to non-Hispanic Whites. Determining factors that contribute to these disparities such as access to quality care, timely diagnosis, and maintenance of insurance will be important moving into the next decade.

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The science of assessing the outcomes and improving the quality of the congenital and paediatric cardiac care

Cited by 13 publications

References 78 publications

Current Interventional and Surgical Management of Congenital Heart Disease

Current Interventional and Surgical Management of Congenital Heart Disease

Factors Associated with the Need for, and the Impact of, Extracorporeal Membrane Oxygenation in Children with Congenital Heart Disease during Admissions for Cardiac Surgery

US Mortality Due To Congenital Heart Disease Across the Lifespan from 1999-2017 Exposes Persistent Racial/Ethnic Disparities

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