Increased Risk of Disabilities in Children and Adolescents With Congenital Heart Disease of Any Severity

The aim of this study was to determine the prevalence of overall and specific disability service use among children with congenital heart disease (CHD) compared with matched controls and siblings.

This was a retrospective data-linkage study of children diagnosed with CHD (excluding chromosomal abnormality/syndrome and extracardiac congenital anomalies) in a hospital in New South Wales, Australia from 2002 to 2014. CHD was stratified into severity groups based on CHD diagnosis and age at cardiac procedure. Disability services data identified intellectual disability, autism, sensory, speech, learning, and physical disability. Multivariable logistic regression models, adjusted for clinical and sociodemographic factors, were used to examine odds of disability compared with children without CHD, with generalized estimating equations used in sibling models.

There were 4420 children with CHD, 37 931 without CHD, and 4606 siblings. The proportion receiving a disability service was 7.0% for severe CHD, 5.6% for other CHD with a cardiac procedure, and 5.1% for nonsevere CHD, compared with 2.5% children without CHD and 3.3% siblings. Adjusted odds ratios (aORs) of any disability service compared with those without CHD were as follows: severe CHD (aOR, 2.82 [95% CI, 2.19-3.63]), other CHD with a procedure (aOR, 2.20 [95% CI, 1.58-3.05]), and nonsevere CHD (aOR, 1.75 [95% CI, 1.42-2.15]). These associations remained in sibling analyses for severe CHD (aOR, 2.47 [95% CI, 1.57-3.88) and other CHD with a procedure (aOR, 1.63 [95% CI, 1.02-2.61]) but not nonsevere CHD.

Children with CHD, regardless of severity, had a significantly higher risk of receiving a disability service than the general population and a greater risk for those who had undergone a cardiac procedure compared with their siblings.