Aims-To evaluate illness knowledge and understanding in children and adoles
cents with congenital and acquired heart disease, and whether the degree of
understanding is related to age, sex, or complexity of the heart disease.
Design-Prospective cohort study.
Setting-Tertiary paediatric cardiac centre.
Methods-Patients' understanding of their congenital heart disease was asses
sed in a representative sample of volunteers aged between 7-18 years using
semistructured interviews based upon Leventhal's illness representation mod
el.
Results-63 of 69 interviews were suitable for analysis. There were similar
numbers of boys and girls and a wide distribution of heart defects. Only 30
% of patients had a good understanding of their illness; 77% did not know t
he medical name of their condition, and 33% had a wrong or poor understandi
ng of their illness. Understanding was unrelated to age, sex, or the nature
of the heart disease. Understanding of illness duration was significantly
related to age, but not to sex or to the nature of the disease.
Conclusions-Illness understanding is poor in children and adolescents with
heart disease, and many have an entirely wrong concept of their disease. In
tensified efforts to ensure better patient and parental understanding are n
eeded.