Developmental and Psychological Concerns in Children With Complex Congenital Heart Disease: The Need for a Screening Program.

AIM: Complex congenital heart disease (CHD) is associated with adverse neurodevelopmental and psychological outcomes. Limited Australian data exist regarding these outcomes or follow-up. This cross-sectional study aims to determine the prevalence of developmental and psychological concerns in South Australian children with complex CHD and concurrent developmental or psychological healthcare utilisation.

METHODS

Families of children with complex CHD aged between 3 years and 7 years 11 months undertook a series of validated screening questionnaires for development (Parents' Evaluation of Developmental Status [PEDS], Parents' Evaluation of Developmental Status-Developmental Milestones [PEDS:DM]) and mental health (Strengths and Difficulties Questionnaire [SDQ]). Demographic data, cardiac history, comorbidities, and current healthcare engagement was determined through standardised patient information questionnaires and medical records. Rates of developmental and psychological concern were determined and compared to Australian general population data.

RESULTS

Fifty-five participants enrolled in the study. The most common cardiac diagnoses were Transposition of the Great Arteries (n = 13) and Tetralogy of Fallot (n = 11). Predictive developmental domain/s of concern were highly prevalent utilising both PEDS (57%) and PEDS:DM (70%) screening tools, exceeding Australian population rates (22%). Psychological concern (28%) also exceeded Australian population data (10%). Nearly half of participants identified to have developmental or psychological concern/s had no current general paediatric, allied health or mental health professional engagement.

CONCLUSIONS

Developmental and psychological concerns detected on screening in children with complex CHD significantly exceed Australian general population prevalence rates. Without an established screening program, a large proportion of participants did not have active follow-up, indicating the importance of routine screening.