Living to a ripe old age with a congenital heart defect? This depends on specialized care and patient-focused research, | Paperkites © | Paperkites

Press Release | Medicine and Healthcare | Healthcare Research

Better Medical Care into Old Age

OptAHF leads the way in congenital heart defect treatment and research

What does it mean to grow old with a congenital heart defect? How can the best possible medical care be provided? These questions have been investigated for the first time in the OptAHF project in collaboration with the Barmer health insurance company and the Competence Network for Congenital Heart Defects. The results of the long-term project, funded by the Innovation Committee of the German Federal Joint Committee (G-BA), will now be used for the further development of guidelines for the treatment of congenital heart defects into old age.

This is one of the greatest advances in cardiac research: Nowadays, growing old with a congenital heart defect is possible. But how well? "One in 100 children is born with this most common organ malformation. For a long time, medical research focused on ensuring the survival of young patients. This has been successful. Even with severe congenital heart defects, well over 90 percent of children now reach adulthood. At the same time, increased life expectancy is creating new challenges for patients and the healthcare system," says Professor Gerhard-Paul Diller, Senior Consultant at the ACHD Center at the University Hospital Münster (UKM). How are adults with congenital heart defects treated in Germany? What are the long-term risks and complications? How do congenital heart defects affect pregnancy or typical age-related diseases?

Guidelines for Improving Life Expectancy and Quality of Life

More than 300,000 patients in Germany alone are hoping for reliable scientific answers to this question. An interdisciplinary research team led by Professor Gerhard-Paul Diller, including clinicians from the UKM and biometricians from the Westfälische Wilhelms-Universität Münster, provided such answers as part of the OptAHF project.

The Innovation Committee of the Federal Joint Committee (G-BA) has now forwarded the research results of the project, which was launched in 2018, to various specialist medical associations, as well as to the Association of the Scientific Medical Societies in Germany (AWMF) and the German Cardiology Society. They could play a decisive role in the design and further development of guidelines for the treatment of congenital heart defects. The goal is to significantly increase the life expectancy and quality of life in patients with congenital heart defects.

Health Insurance Companies also in Demand

For their studies, the scientists were able to draw on anonymized data from people insured by Barmer, which was made available in the Science Data Warehouse between 2005 and 2019. The National Registry of the Competence Network for Congenital Heart Defects, with its unique inventory of disease and treatment data from more than 60,000 voluntary data and sample donors, ensured data synchronization and data depth.

OptAHF not only revealed that half of affected adults are treated exclusively by primary care physicians. "The research results also show that a lack of specialist care increases the risk of complications and death," says Ursula Marschall, Head of Medicine and Health Services Research and OptAHF project leader at the Barmer Institute for Health Systems Research (bifg). "Qualified, centralized treatment helps to significantly improve patients' quality of life and to minimize health care and social costs caused by misdiagnosis, incorrect treatment, and duplicate examinations," says the health economist. Health care insurers are also called upon to provide support in this area through targeted information.

OptAHF Continues

From the point of view of the Competence Network for Congenital Heart Defects, the recommendation of the G-BA's Innovation Committee on the transfer of knowledge into health care is an important step: "The research results are already helping us, for example, to better assess the risks of pregnancy or various frequently prescribed medications and to keep them as low as possible. Interdisciplinary cooperation is a key factor in this," says Professor Anselm Uebing, Chairperson of the Competence Network.

At the same time, he points out that the state of knowledge is still unsatisfactory: "Research on adults with congenital heart defects is still young. There are still many pressing questions regarding the long-term quality of life of patients." OptAHF will now continue for another three years thanks to funding from outside the Innovation Committee. However, it is crucial that the conditions for such patient-oriented research are maintained in the long-term. To this end, the valuable work of the National Registry at the Competence Network for Congenital Heart Defects must be placed on a secure financial footing.

Further press materials

The press materials are freely available to you in connection with your reporting on research at the Competence Network for Congenital Heart Defects. We will be happy to support you with image material upon request.

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