Longitudinal behaviour of children with complex congenital heart disease from preschool to adolescence

This study investigated behaviour in children with complex congenital heart disease (cCHD) from preschool to adolescence and identified predictors for normal behaviour.

Parent-reported behaviour of 137 children with cCHD was assessed at ages 4, 6, 10, and 13 years and compared to norms. Latent class growth analysis (LCGA) identified distinct behavioural trajectories. Predictors of normal behaviour and adolescent outcomes (self-reported quality of life [QoL], special educational needs [SEN]) were examined by LCGA-defined trajectory groups.

Compared to norms, children with cCHD had more emotional problems at 6 years, and more emotional problems, hyperactivity, and total behavioural problems at 13 years of age (all p < 0.05). LCGA identified Class 1 with increasing problems with age (26%,p_slope < 0.001), Class 2 with early problems improving with age (18%,p_slope < 0.001) and Class 3 with normal behaviour across ages (55%,p_slope = 0.28). Higher child IQ (OR = 1.1,p = 0.020) and better maternal mental health (OR = 0.9,p = 0.004) at 4 years predicted normal behaviour. Normal behaviour was linked to less SEN (p < 0.001), but not significantly to QoL (p = 0.059).

A subgroup of patients with cCHD demonstrates behavioural problems over time. Higher IQ and better maternal mental health predict favourable behaviour. These findings underscore the importance of neurodevelopmental follow-ups and family-centred care to identify and support children at-risk.

Behavioural outcomes in patients with complex congenital heart disease (cCHD) are highly heterogenous both between patients and over time. This study identified distinct subgroups of behavioural trajectories, including one with increasing difficulties over time, one with decreasing difficulties, and one without persistent problems. Children with cCHD with behavioural problems also frequently require special educational needs. Higher child IQ and better maternal mental health during preschool predicted favourable behavioural outcomes over time. Repeated neurodevelopmental follow-ups into adolescence and the implementation of family-centred care are key to identify at-risk individuals and support long-term outcomes in cCHD.