Children's and adolescents' understanding of their small ventricular septal defects.

BACKGROUND: Congenital heart disease is common yet poorly understood in childhood. We reviewed the understanding of older children and adolescents with the commonest congenital heart defect, namely, a small ventricular septal defect (VSD), through a questionnaire and/or their drawings of their abnormality. METHODS: As part of a wider study, older children and adolescents with a small VSD were asked to draw a picture of their cardiac defect in addition to completing a questionnaire. RESULTS: Twelve of an initial cohort of 20 participants, who were between the ages of 8 and 20 years, completed a drawing of their malformation. Further drawings were obtained from five additional participants recruited from a private practice over the next few years. There were almost equal number of male and female participants overall. Nearly all participants had a limited understanding of their cardiac abnormality as reflected by their drawings. Nevertheless none reported restricting their physical activity. CONCLUSION: While most older children and adolescents did not seem to have a clear understanding of their small VSD, it did not appear to affect their daily activity. The participants placed a greater reliance on the information provided by their parents rather than their doctor, emphasizing the importance of informing both the parents and the patient.