Heart Researcher Editorial Team: Dr. Bauer, as Managing Director you head the Competence Network for Congenital Heart Defects and the National Register for Congenital Heart Defects and thus one of the world's largest research platforms in this field. In Germany today, there are an estimated 300,000 adults living with mild, moderate or severe congenital heart defects. And the number has been growing steadily for years. What does that mean?

Ulrike Bauer: Today 97 percent of children with congenital heart defects reach adulthood. This is a success story of research, that has enabled improved diagnostics and therapy. However, part of the truth is that specialized treatment for congenital heart defects at all ages is not yet the standard of care. As a result, many die far too early.

Heart Researcher Editorial Team: Professor Diller, you are an ACHD specialist (Adult Congenital Heart Disease specialist) at Münster University Hospital and lead the research on OptAHF. The project you initiated and launched in 2018 is one of the most comprehensive ever on the risks and medical care in CHD. How far can we look into the future of people with congenital heart defects today?

Professor Gerhard-Paul Diller: Our nationwide health care analysis is the largest study on the subject to date. For this purpose, we were able to access the anonymized data of insured persons of all age groups with all outpatient and inpatient diagnoses that were coded by Barmer Krankenkasse  (Barmer Health insurance) between 2005 and 2019. We thus have an overview up to an advanced age.

Heart Researcher Editorial Team: Dr. Marschall, you are head of the Medicine and Health Services Research Department at the Barmer Institute for Health Systems Research and responsible for OptAHF on behalf of the health insurance fund. Research with data from a health insurance company is still new territory. What was important for you?

Ursula Marschall: We have a high interest in ensuring that the insured receive optimal care and have a good quality of life. Routine data from health insurers can make a valuable contribution to this. They are particularly useful for illustrating the paths patients take between outpatient and inpatient care.

More than half of patients don't make it to ACHD specialists.

Heart Researcher Editorial Team: Professor Diller, what do you think is the most important finding of OptAHF?

Professor Gerhard-Paul Diller: Research results of various studies already indicated in the past that there are gaps in the care of adolescents and adults with congenital heart defects. This assumption has been confirmed by the nationwide long-term study. More than half of patients do not reach ACHD specialists. For the increasingly large patient population, that's a problem.

Heart Researcher Editorial Team: What does that mean in concrete terms?

Professor Gerhard-Paul Diller: Between the ages of 15 and 25, and even more so from the age of 45, the risk of secondary diseases increases significantly in patients with moderate and severe heart defects. This could be prevented in a targeted manner. Pulmonary hypertension and cardiac arrhythmias, for example, must be detected in time and treated in a specialized manner. Risks during pregnancy or risks from anticoagulants and antiarrhythmic amiodarone-based drugs are also frequently misjudged.

Those affected include the whole family, including the life partner. That's often forgotten.

Heart Researcher Editorial Team: What conclusions do you draw from this?

Professor Gerhard-Paul Diller: It is important that all those treating and affected talk more to each other and that there is also more interdisciplinary communication. When we talk about those who treat patients, we mean not only physicians from various disciplines, but also medical professionals from other fields, such as psychology, rehabilitation medicine or physiotherapy. And those affected include the entire family. This is often forgotten.

Qualified, centralized care helps minimize unnecessary health care spending.

Heart Researcher Editorial Team: Dr. Marschall, what do the research results mean from Barmer's point of view? What can health insurers contribute to improving care?

Ursula Marschall: OptAHF has proven that congenital heart defects require continuous medical support from appropriately specialized centers. The health insurance funds can also help with information on where the nearest center can be reached close to home. Qualified, centralized treatment also helps to minimize unnecessary health care expenditures. These result from misdiagnosis, incorrect treatment and unnecessary duplicate examinations.

Heart Researcher Editorial Team: What role does research play in the quality of life and life expectancy of those affected?

Professor Gerhard-Paul Diller: A very crucial one. We must continue to promote interdisciplinary research. We still know too little about the effects of typical age-related diseases in patients with congenital heart defects and their specific anatomy. This is only beginning to change as a result of studies such as OptAHF.

Heart Researcher Editorial Team: Dr. Bauer, Dr. Marschall, Professor Diller, thank you very much for the interview!