Objectives: This study reports on current information sources of women with Congenital Heart Disease (CHD) regarding sexuality, pregnancy and contraception.
Study design: 536 women with CHD, aged 29 years (18-75 years) underwent clinical assessment and completed a questionnaire regarding sources of information they had received about sexuality, pregnancy and contraception.
Results: The sources where affected women sought information regarding sexuality, pregnancy or contraception were wide spread and varied between the different age groups. Not only the treating physician, but also friends were the main information sources. Written information from sources such as newspapers, magazines, books and also the internet were used less often. Only few women received information from affected patients. The women rated their level of information (on a level up to 10) regarding sexuality with a median of 3.5, and with a median of only 5 regarding contraception as well as pregnancy.
Conclusions: Current counseling practice for pregnancy and contraception in women with CHD is inadequate. Failure to give knowledgeable family planning advice appropriate for the individual risk profile in this high-risk patient group can have hazardous consequences and cause an unnecessary risk for mother and child. Many doctors fail to confront their patients with congenital heart defects early with issues of regarding sexuality, pregnancy and contraception and to advise them adequately. A cooperative approach involving congenital cardiologists as well as experienced gynecological endocrinologists with appropriate knowledge about CHD is indispensable.