How much do parents know about their children's heart condition and prophylaxis against endocarditis?

Caregivers are frequently expected to serve as a conduit for information between heath care providers; however, few previous studies showed inadequate parental knowledge about their children's heart disease.

To assess parental knowledge regarding their children's congenital heart disease, risk of bacterial endocarditis (BE) and requirement for BE prophylaxis.

Parents of 65 consecutive children with heart disease, aged from two months to 16 years, were asked to complete a survey while awaiting their ambulatory appointment.

On average, patients had been seen by 1.7 cardiologists and had attended 7.8 clinic appointments before the study, with 55% having undergone heart surgery and 18% currently taking cardiac medications. In general, caregivers felt they had received full explanation of their child's condition (89%) and were informed sufficiently about ongoing care (91%), yet only 71% knew the specific name of their child's heart defect, with 65% being able to correctly explain the condition in layman's terms. Of the 55 children whose heart defects fulfilled risk criteria for BE, only 47% of their parents declared to have ever heard of the disease, with just 25% able to correctly define it. Although 71% of the children's parents knew that special medication was required when seeing a dentist, only 29% were aware of any other situations when they would also require it. As many as 27% of the children who required BE prophylaxis had had significant dental problems in the past, including root canals, extracted teeth, braces, caps and gingivitis.

Many parents are not familiar with their child's heart disease and do not understand the risks of BE or the need for BE prophylaxis. Results of this study and several other queries published over the past 20 years point to the need for continuous education of patients and their parents by physicians, nurses and allied health care providers.