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Frequent medical appointments and concerns about the future significantly impact the quality of life for families with children who have heart defects, as a recent study shows / Invitation to the online forum on April 23, 2026

Frequent follow-up appointments, anxiety before procedures, and concerns about school or development place a significant burden on many families with a child who has a congenital heart defect. This is shown by a recent study from the Medical Center – University of Freiburg. The team has introduced specialized questionnaires on quality of life and published initial findings on February 18, 2026, in the journal Frontiers in Pediatrics. On April 23, 2026, the team, in collaboration with Herzklopfen e.V., is hosting an online forum to discuss these findings and other challenges with those affected.

“Many parents of children with heart disease are under immense stress. They coordinate doctor’s appointments, monitor medications, and at the same time worry about complications,” says Prof. Dr. Brigitte Stiller, Medical Director of the Department of Congenital Heart Defects and Pediatric Cardiology at the Medical Center – University of Freiburg. “This constant responsibility and the uncertainty about the future course of the disease take a toll. With the new questionnaires, we can specifically identify these burdens and then take steps to address them.”

Systematically assessing quality of life in congenital heart defects

The questionnaires are aimed at children and adolescents with congenital heart defects as well as their parents. They assess the burdens caused by medical appointments, restrictions in sports and school or vocational training, and emotional concerns. 

“The questionnaires bridge the gap between clinical care and lived experience. They help us identify more quickly during consultations where specific support is needed,” says study leader Dr. Christoph Zürn, a pediatric cardiologist at the Department of Congenital Heart Defects and Pediatric Cardiology at the Medical Center – University of Freiburg. “When we see that issues such as school problems, social withdrawal, or the burden of therapy are causing significant stress, we can provide targeted counseling or arrange for additional support.”

95 families with a child with heart disease have already participated in the study (as of early March 2026). The survey is conducted as part of regular care at the Medical Center – University of Freiburg. 

Invitation to the Online Forum on April 23, 2026

On Thursday, April 23, 2026, from 5:00 to 6:30 p.m., Herzklopfen e.V. and the Medical Center – University of Freiburg invite you to a free online forum titled “Living with a Congenital Heart Defect – Our Experiences, Our Quality of Life” via Microsoft Teams. Those invited include individuals up to age 17 with a congenital heart defect, as well as parents and caregivers. “We expressly hope that children and adolescents with congenital heart defects will participate: They know their own quality of life best—their perspective is particularly important to us,” emphasizes Zürn.

Feedback from the online forum will be incorporated into the ongoing research project. In the long term, the questionnaires are to be permanently integrated into patient care at the Medical Center – University of Freiburg. This will ensure that quality of life for those with congenital heart defects is given greater consideration on an ongoing basis.

Registration available at: 

kjk.pedsql@uniklinik-freiburg.de
www.herzklopfen-ev.de 

Original title of the publication: Bridging clinical care and lived experience: early implementation of longitudinal health-related quality of life monitoring in congenital heart disease

DOI: 10.3389/fped.2026.1701283

Link:https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1701283/full