Abstract

Introduction: Congenital heart defects (CHD) are the most common birth defects and are estimated to affect almost 1% of births per year in the US. Most CHD prevalence estimates are based on data from population-based birth defects surveillance systems and these estimates are inconsistent due to varied definitions. It is therefore important to derive high-quality, population-based estimates of the prevalence of CHD to help care for this vulnerable population. Methods: We analyzed all payer claims data (APCD) from Colorado from 2012-2019. Children with CHD were identified by applying CHD ICD-9 and ICD-10 diagnoses codes from the Society of Thoracic Surgeons (STS) International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD) harmonized cardiac codes. We included children with CHD < 18 years of age who resided in Colorado, had a documented zip code, and had at least one ambulatory healthcare claim. We analyzed the test for linear trends in the proportion of CHD diagnoses from 2012-2019 with the Cochran-Armitage (Z) test. Differences among patient characteristics and CHD diagnosis were tested using the Pearson Chi-square test and Wilcoxon rank sum tests as appropriate. Results: Overall the current study analyzed 1,565,438 children with 36,567 CHD diagnoses (i.e. 23.4 per 1,000 live births), comprising 2.3% of the pediatric population. Between 2012 and 2019 the statewide rate of children diagnosed with CHD significantly increased from 21.9 to 32.3 per 1,000 children per year (Z: 5.38; p<0.001). There were statistically significant differences in the magnitude of the trend in CHD prevalence rate by region (Z: -31.82), urban-rural residence (Z:-24.02), degree of chronic complex conditions (Z: -38.78), disease severity (Z: -44.11), age (Z: -72.89), insurance type (Z: 46.51) and median household income (Z: 12.87; all p<0.001). Conclusion: The current study is the first population-level analysis of pediatric CHD in the US and these findings suggest that the statewide CHD prevalence rate has increased significantly since 2012. Children with CHD are a priority population for quality improvement in pediatrics given their growing prevalence and corresponding risk of adverse outcomes.

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