Draw your Heart Disease: A Graphic Assessment of the Knowledge of Congenital Heart Disease of Patients and their Parents

Background Patients with congenital heart disease are a chronically ill population. Knowledge of the disease is a key factor in promoting an appropriate attitude towards health. The aim of this study is to evaluate the understanding of heart involvement by describing the heart disease and drawing a picture of the heart by patients and parents. Methods Descriptive cross-sectional study over an 8-month period in a tertiary pediatric cardiology center, involving 201 parents and 123 patients, of whom 74 were between 8 and 14 years old and 49 were older than 14 years old. A questionnaire was used in which they had to name and describe the disease, and where a blank box was included in which they were asked to draw their congenital heart disease. Results 68.8% of the patients correctly named their heart disease, however only 32.4% described it adequately and only 3.5% drew a correct picture of it. Divided by age groups, of the patients between 8 and 14 years old 45.9% named their cardiopathy correctly, 28.2% described it adequately and 4.1% drew a correct picture of it. Of those over 14 years of age, 83.6% correctly named their cardiopathy, 26.5% knew how to describe it and only 2% managed to draw it properly. In the group of parents, 79.1% correctly named their child's congenital heart disease, 45.8% described it adequately and only 3.5% drew a correct picture (p value 0.55). Conclusions Most parents and patients with congenital heart disease are unaware of fundamental aspects of their heart disease. An effort should be made by the professionals to try to explain congenital heart disease in an illustrative way, in order to achieve a better understanding of the disease and thus optimize the behavior in terms of health.