A fulfilling sex life contributes significantly to quality of life. This is also true for adults with congenital heart defects (ACHD). However, although the influence of the "most wonderful thing in the world" on personal well-being is generally recognized, sexual health still receives too little attention in the medical care of ACHD, as a new study based on the National Registry at the Competence Network for Congenital Heart Defects shows.

We Care too Little About the Issue

According to a survey of 371 participants in the National Registry for Congenital Heart Defects, well over one-third (43 percent) of men with congenital heart defects complain of erectile dysfunction, including 83 percent with moderate to severe congenital heart defects. "Given the young average age of the patient group surveyed, this seems to us to be quite frequent compared to the figures for the general population. We know from various studies that sexual activity and satisfaction with lovemaking play a crucial role in the health and quality of life of adult patients. Nevertheless, we pay far too little attention to this important topic," summarizes first author Alicia Fischer, a specialist in internal medicine and cardiology at the ACHD Center of Münster University Hospital.

Multiple Causes

Erectile dysfunction can have a variety of causes. Organic, psychological and social factors play a role even in heart-healthy men. However, congenital heart defects have a different effect on sexual life. "Cardiac and extracardiac sequelae, endothelial dysfunction and the risk of life-threatening cardiac arrhythmias can significantly limit sexual activity, especially in men with congenital heart defects over the age of 40," explains Professor Gerhard Paul Diller, ACHD specialist at Münster University Hospital.

Fears Play a Major Role

However, organic causes are not the only reason why many adults with congenital heart defects suffer from erection problems. Advanced adulthood, singles status, depression and fear of sexual activity due to congenital heart defects emerged as possible risk factors. "It's often about anxiety. This can be observed even in young men with congenital heart defects," says co-author and psychologist Paul Helm. "In our survey, the fear of cardiac arrhythmias and sudden cardiac death due to sexual activity were most frequently reported by those affected, regardless of whether such a risk was actually present." 

One Third Would Like to See Initiative from the Attending Physician

This underscores the importance of counseling and education from the ACHD specialist. "Erection problems are definitely not something to put up with.  Something can be done for sexual health in most cases, even with congenital heart defects," emphasizes Alicia Fischer. But the conversation about this sensitive topic is sought far too seldom. Out of one hundred affected patients, only one in seven spoke up about their sex life of their own accord. In principle, around one third of all study participants would welcome it if the doctor took the initiative.

Sexual Health Must Become Part of Routine Clinical Practice

"Congenital heart diseases are chronic conditions that require regular follow-up, ideally in specialized centers. In theory, this should provide the opportunity to build a trusting doctor-patient relationship that allows physicians to address more sensitive issues such as erectile dysfunction," says Professor Gerhard-Paul Diller. The researchers recommend that sexual health be included in routine clinical practice and that high-risk patients in particular be actively approached about their love lives.