Enormous progress in pediatric cardiac medicine has led to more than 90 percent of children born with a congenital heart defect reaching adulthood. Thanks to medical research, the care of adults with congenital heart defects (ACHDs) has also improved significantly, for example through the availability of specialist ACHD doctors and centers.

Specialized follow-up care is important because the truth is that as life expectancy increases, so does the risk of secondary diseases and late complications for patients, as well as the risk of premature death from so-called acquired diseases, cancer among them.

One in Two People will Develop the Disease during Their Lifetime

Cancer is the second most common cause of death in the general population following cardiovascular disease. Statistically, one in two people will develop the disease during their lifetime. In addition to genetic factors, older age, increased life expectancy, lifestyle and various environmental factors increase the likelihood of developing the disease.

Even Young ACHD patients Are at Higher Risk

Recent studies have shown that adults with a congenital heart defect have a higher risk of developing cancer than 'heart healthy' people, even at a relatively young age with an average age of 27. Genetic changes that also favored the congenital heart defect, as well as increased exposure to radiation during medical treatment, appear to be associated with the increased risk.

The Most Common in Men and Women

There are three types of cancer that are particularly common. In women with congenital heart defects, as in the general population, breast cancer is the most common, followed by bowel or lung cancer; in men with congenital heart defects, as in all men, the most common cancers are prostate, bowel or lung.

Life-Saving Cancer Screening

We see adults with congenital heart defects dying far too early from cancer that was diagnosed too late. This is unacceptable. The earlier a cancer risk or cancer is detected, the greater the chance of prevention or timely treatment, resulting in improved life expectancy and quality of life.

This is especially true for ACHD patients. Regular cancer screening is crucial for them.

How Do ACHD Patients Make Use of Cancer Screening? Do They Find Suitable Offers?

Studies have shown that statutory cancer screening programmes are still generally underused. We now want to find out what the situation looks like for ACHD patients. A US study has shown that women with congenital heart defects are significantly less likely to take part in cancer screening programmes than their healthy counterparts.

That's why we want to find out what the potential barriers to cancer screening are for ACHD patients by conducting a nationwide representative survey of participants in the National Registry.

Our aim with this study is to gain an overview of the uptake of the statutory cancer screening programmes by ACHD patients and to identify potential barriers in order to provide patient-friendly cancer prevention and early detection services in the future. This could reduce the number of ACHD patients who develop cancer and die prematurely.

Survey Launch in Fall 2024

Many registry participants will receive a letter or email from the National Registry inviting them to participate in an online survey developed for this purpose. Thank you in advance for your participation. It can save lives.