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Knowledge and Communication

Patient Survey: All is Well?

Psychologists and Social Counselors are Rarely Consulted

Scientific name of the study

Congenital heart disease patients' and parents' perception of disease‐specific knowledge: Health and impairments in everyday life.

Each year, about 7,000 children are born with congenital heart disease in Germany; 90 percent of these nowadays reach adulthood. When turning 18, patients have sole responsibility for getting necessary medical prevention and advice. However, this is the time when many of them tend to misjudge their own state of health, which is dangerous. This was the result of the presented study by the National Register for Congenital Heart Defects.

The study results were first published in January 2018 in the journal „Congenital Heart Disease“: Helm, P. C., Kempert, S., Körten, M. A., Lesch, W., Specht, K., & Bauer, U. M. Congenital heart disease patients' and parents' perception of disease‐specific knowledge: Health and impairments in everyday life.


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