Publication date: May 15, 2025

Background/Objectives: The COVID-19 pandemic impacted healthcare access globally, with chronic conditions like congenital heart defects (CHD) posing unique challenges. While general trends have been studied, little is known about the impact on CHD patients in Europe. This study assessed the living conditions, healthcare utilization, and psychosocial well-being of CHD patients and their families in Germany, considering CHD severity, gender differences, and changes over time. Methods: Data were derived from two cross-sectional online surveys conducted by the National Register for Congenital Heart Defects (NRCHD) in April 2020 and April 2021. Surveys targeted CHD patients and relatives, assessing healthcare access, risk perception, COVID-19-related knowledge, and psychosocial effects. Statistical analyses compared responses by gender, CHD severity, and survey period. Results: A total of 6737 responses were analyzed. Healthcare utilization declined early in the pandemic due to infection fears but partially recovered in 2021. Perceived health risks increased from 27. 9% in 2020 to 38. 7% in 2021 (p < 0. 001), along with higher psychosocial distress. COVID-19-related knowledge was greater in 2020, but trust in government information declined, while reliance on healthcare providers increased. Gender and CHD severity influenced healthcare engagement and perceptions. Conclusions: This study highlights the challenges CHD patients faced, underscoring the need for holistic, patient-centered care. Future interventions should focus on tailored communication and support strategies, particularly for vulnerable populations, to mitigate the impact of future health crises.

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