Academic Achievements in Adolescents with Congenital Heart Disease: A Total Population-Based Cohort Study.

BackgroundImproved survival in children with congenital heart disease (CHD) has unveiled associated long-term neurocognitive impairments. However, the long-term effects on academic performance and the influence of sex, family, socioeconomic factors, and surgical era remain understudied, limited by small and incomplete cohorts. MethodsThis total-population cohort study, with nested sibling analysis, included 1 800 477 singletons born in Sweden between January 1, 1987, and December 31, 2005. Academic achievements at age 16 were assessed by upper secondary school eligibility, total grade sum, and subject-specific grades. Poisson and logistic regression were used to estimate adjusted prevalences, risk ratios (RR), and risk differences (RD). Adjustments were made for year of birth and socioeconomic status. Stratification by noncardiac congenital anomalies, sex, and surgical era was performed. ResultsAmong 1 800 477 Swedish-born singletons with complete socioeconomic data and residing in Sweden at 16 years of age, 16 075 (0.9%) individuals were identified with CHD and classified hierarchically as univentricular heart (UVH, n=349), severe (n=1 939), moderate (n=1 764), or mild CHD (n=12 023). After excluding major noncardiac congenital anomalies, the adjusted RD for failing to meet upper secondary school eligibility compared to children without CHD was 11 (95% confidence interval 5 to 17), 7 (4 to 9), 6 (3 to 8), and 2 (2 to 3) additional children per 100 for UVH, severe, moderate, and mild CHD, respectively. Children with both CHD and noncardiac anomalies had poorer academic outcomes than those with CHD alone. Additional risk factors were small for gestational age RR 2.34 (95% confidence interval 2.04-2.69) and prematurity RR 1.81 (95% confidence interval 1.64-1.99). Findings were consistent across core subjects, total grade sum, in sibling analyses, and over time. ConclusionAdolescents with CHD inherently face poorer academic performance, worsening with disease severity and persisting over time. This highlights ongoing educational disparities, especially among children with complex and univentricular heart disease. What Is New?O_LIThis nationwide cohort study demonstrates that academic achievement declines with increasing congenital heart disease (CHD) complexity, with disparities persisting after adjustment for socioeconomic and familial factors. C_LIO_LISmall for gestational age is identified as an independent risk factor for reduced academic outcomes in children with CHD, a previously unrecognized association. C_LIO_LIDespite the advancements in surgical survival rates over recent decades, academic outcomes did not demonstrate similar improvements. C_LI What Are the Clinical Implications?O_LIMultidisciplinary follow-up should extend beyond cardiac care in children with CHD, to include cognitive and educational support. C_LIO_LISmall for gestational age status represents an additional risk factor and should be incorporated into risk stratification. C_LIO_LIGenetic abnormalities associated with CHD significantly affect academic outcomes; routine genetic testing should be considered to guide individualized care. C_LI