Psychological outcome and quality of life in children born with congenital diaphragmatic hernia

OBJECTIVE: To assess psychological and social functioning as well as health-related quality of life and its early determinants in children born with congenital diaphragmatic hernia (CDH). DESIGN: Cross-sectional follow-up study. SETTING: Outpatient clinic of a tertiary care hospital. PARTICIPANTS: Thirty-three CDH survivors aged 6-16 years. Main exposure: Patients who developed CDH associated respiratory distress within 24 hours after birth. MAIN OUTCOME MEASURE: Psychological and social functioning assessed with the Wechsler intelligence scale for children (WISC-R), Bourdon-Vos test, Beery Developmental Test of visual motor integration, Child Behaviour Checklist (CBCL) and Teacher Report Form (TRF). Health-related quality of life assessed with the Child Health Questionnaire (CHQ) and the Health Utilities Index (HUI). RESULTS: Normal mean total IQ (100.0 +/- 13.2) and normal visual-motor integration, but significantly lower results for sustained attention (Bourdon-Vos test (38.8 +/- 11.2 points)) were found. Learning difficulties were reported by 30% of the parents. Eight children had scores in the clinical range on the CBCL and/or TRF, indicating clinical significant behavioural problems. Except for the CHQ scale "General health", health status was not different from the reference population. No significant correlations between test results and severity of CDH were found, except an association of general health and physical functioning with length of hospital stay. CONCLUSION: CDH patients are at risk for relevant subtle cognitive and behavioural problems, probably not related to CDH severity. These may contribute to school failure and need for special educational services. Perception of general health is reduced when compared to the reference population indicating that CDH survivors and their parents believe their health is poor and likely to get worse