Patients' poor knowledge of their heart condition may have harmful consequences

June 13, 2001

What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education 2001; 86:74-80

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Adults with congenital heart disease have important gaps in their knowledge about their condition, finds a study in Heart. Because this lack of knowledge may result in harmful behaviour or inappropriate restrictions, much needs to be done to improve patients' knowledge about their illness, report the authors.

Researchers in Belgium surveyed 62 adults with congenital heart disease attending the outpatient clinic of the University Hospitals of Leuven about their understanding of their disease, its treatment, and the measures necessary to prevent complications.

They found that on the whole the patients were very knowledgeable (more than 80% giving correct answers) about their treatment, frequency of follow up, dental practices, occupational choices, appropriateness of oral contraceptives, and the risks of pregnancy.

They were less knowledgeable (50-80% giving correct answers) about the name and anatomy of their heart defect, the fact that endocarditis (infection of the internal lining of the heart) could recur, and the appropriateness of physical activities.

There was poor understanding (less than 50% giving correct answers) about factors such as the symptoms of deterioration of their condition, signs and risk factors for endocarditis, the impact of smoking and alcohol, and inheritance of the condition.

Although some aspects were well understood, these findings suggest that there are still important knowledge gaps among these patients, say the authors. Given that this lack of knowledge may have harmful consequences, centres caring for adults with congenital heart disease should invest in adequate and structured patient education in order to enhance patients' health behaviour, they conclude.

Philip Moons, Centre for Health Services and Nursing Research, University Hospitals of Leuven, Belgium

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