(P065) ASSESSMENT OF RESOURCE AVAILABILITY AND USE FOR NEURODEVELOPMENTAL OUTCOMES IN CHILDREN WITH CONGENITAL HEART DISEASE IN NOVA SCOTIA

Background: Children with congenital heart defects (CHD) are disproportionately affected by neurodevelopmental (ND) impairments. In 2012, the American Heart Association published a statement calling for increased surveillance, screening, and evaluation of these children to enhance functioning and development. Despite these recommendations, many children fail to receive adequate care and support. In Nova Scotia (NS), there is no formal assessment program for ND impairments in children with CHD and data on available supports and barriers for this population.

METHODS AND RESULTS: We developed a questionnaire for NS children with CHD and their parents focused on identifying ND impairments and assessing available supports and barriers. Eligible participants were aged 2-18, had a diagnosis of a CHD and resided in Nova Scotia. Participants were recruited through the Children’s Heart Centre at the IWK Health Centre. In total, 50 participants completed the questionnaire. The average child age was 9.22 years, and the most frequent CHD severity was mild (n=26). A total of 19 (38%) participants reported ND impairments, the most common subgroups being intellectual (n=11), and social (n=10). A multivariate regression analysis revealed that neither CHD severity, income level, nor rural/urban were predictors of ND impairment. If they were referred for a formal assessment (73%, n=14), it was most commonly to an audiologist (n=4), with a 3-6 month wait (n=5). The most common supports utilized were early intervention programs (n=10) and Individualized Program Plans (IPP) (n=8). The most common barriers included extensive wait times (n=8) and lack of local availability (n=7). Overall, the youth who completed the complimentary questionnaire felt supported by their family (n=16), school (n=13), and healthcare team (n=15).

Conclusion: These results demonstrate a general lack of accessible support for children with CHD and ND abnormalities. It also suggests that supports through schools are commonly accessed and should therefore be further leveraged to support these children and their families.