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Minerva Pediatrica 2015 Apr 28


language: Italian

Long-term psychosocial functioning in congenital heart disease children and adolescents and in their parents

Utens E. M. 1, Amianto F. 2

1 Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Sophia Children’s Hospital, Rotterdam, Netherlands; 2 Dipartimento di Neuroscienze, Sezione Psichiatria, Ospedale San Giovanni Battista di Torino, Università di Torino, Torino, Italia.


BACKGROUND: This review describes the main findings of two follow-up studies into long-term psychosocial outcomes of in children and adolescents with congenital heart disease (CHD) and their parents.
METHODS: For both studies, all consecutive patients, who underwent their first open heart surgery or invasive treatment for congenital heart disease (study 1: between 1968-1980, study 2: between 1990-1995) in the Erasmus Medical Center Rotterdam, the Netherlands, who were younger than 15 years of age at the time of surgery, were eligible. The first study was performed between 1989-1991, the second one between 2003-2005.
RESULTS: The first study demonstrated that 10-17 year-old CHD children and adolescents, who underwent surgical “correction” for congenital heart disease before 1980, showed significantly higher levels of behavioural/emotional problems compared to normative groups, both according to parents’ reports (N=144) and self-reports (N=179). The second, more recent study was executed in 7-17-year-old patients (N=124). Despite improvements in medical treatment over the years, patients from this more recent study still showed higher levels of behavioural/emotional problems and also a poorer health–related quality of life, compared to reference groups. Parents of patients showed favorable outcomes on psychosocial well-being (N=100 mothers, 61 fathers) and coping styles. In both studies, no clear relationships were found between cardiac diagnoses and psychosocial outcomes.
CONCLUSION: Considering the poorer behavioural/emotional functioning and poorer health related quality of life of these children and adolescents with congenital heart disease, we recommend early screening to identify children are at risk.

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