Aims: To test the predictive value of medical variables, covering the complete medical course from birth until the present, for long-term behavioural and emotional problems in adulthood, in patients operated for congenital heart disease in childhood.
Methods and results: This study concerns the second psychological and medical follow-up of a cohort of patients operated for congenital heart disease (n=362; age 20-46 years). Behavioural and emotional problems were assessed with the Young Adult Self-Report and the Young Adult Behavior Checklist. Medical prediction variables were derived from medical examination and file search. Being female, having low exercise capacity and restrictions imposed by physicians are significant predictors for behavioural and emotional problems as reported by patients themselves. Regarding the scar, personal experiences of patients form a better predictor for later problems than judgement of aesthetical aspects by physicians. Early hospitalisations with reoperations are predictive for behavioural and emotional problems as reported by other informants. The cardiac diagnoses of ventricular septal defect and transposition of the great arteries are associated with higher levels of behavioural and emotional problems.
Conclusion: Recent experiences concerning the scar, physical condition and imposed restrictions are the strongest predictors for behavioural and emotional problems as reported by patients themselves.