Long-term behavioural and emotional problems in four cardiac diagnostic groups of children and adolescents after invasive treatment for congenital heart disease.

AIMS: To assess the occurrence of a wide range of behavioural and emotional problems long-term after invasive treatment for congenital heart disease (ConHD) in infancy and childhood. METHODS: Parents of 125 ConHD children, aged 7-17, completed the Child Behavior Checklist and 85, 11-17-year-old, ConHD children completed the Youth Self-Report. RESULTS: According to parents' reports of problem behaviours a significant proportion of ConHD children scored in the deviant range (16.9%) compared to the reference group (10.2%). The proportion of ConHD boys scoring in the deviant range according to parents (21.4%) was significantly greater than that in the reference sample (10%). Parents reported significantly higher problems scores for the scales Somatic Complaints, Social Problems, Attention Problems, Internalising and Total Problems compared to the reference group. In contrast, reports of patients were comparable to those of reference peers. No differences were found on the self-reports between problem scores for different cardiac diagnostic groups. Discrepancies between self- and parent-reports were found, indicating that more problems were reported by ConHD patients themselves than by their parents. CONCLUSION: Overall, parents of ConHD patients reported higher levels of behavioural and emotional problems compared to the reference group whereas patients themselves reported no long-term behavioural impairment compared to same-sex reference peers. Assessing behavioural and emotional problems in ConHD patients can be helpful to detect children at risk for developing psychopathology. Especially younger male ConHD patients deserve special attention.

Health-related Quality of Life in children and adolescents after invasive treatment for congenital heart disease.

Since the 1980s treatment techniques for congenital heart disease (ConHD) have gradually evolved. Therefore, actual information on the outcomes, including quality of life is required. Health-related quality of life was assessed long-term in four diagnostic groups of children, who underwent invasive treatment for ConHD between 1990 and 1995. The scores on the TNO-AZL Child Quality of Life Questionnaire (TACQOL) of both children with ConHD and their parents were compared with those of a same-aged reference group. The total sample of ConHD children (n = 113, 8-15 years old) obtained significantly lower mean scores on motor functioning, cognitive functioning, and positive emotional functioning than reference peers, reflecting an experience of poorer functioning. ConHD children, aged 8-11 years, obtained lower mean scores on 5 of the 7 TACQOL scales than reference peers. They also had a lower score on positive emotional functioning than 12- to 15-year-old ConHD children. The total sample of ConHD children obtained lower outcomes compared to their parents on 4 of the 7 TACQOL scales. No significant differences were found in health-related quality of life between ConHD boys and girls, neither between different diagnostic groups. Overall, this sample of recently treated ConHD children showed a worse health-related quality of life compared to reference groups. These findings deserve further attention.