Schütte Emily, Nasri Saskia Olivia, Ehmann Anna-Lena, Semmler Janina, Berger Felix, Bauer Ulrike M M, Schmitt Katharina, Tremblay Cornelia, Remmele Julia, Orwat Stefan, Diller Gerhard-Paul, Pfitzer Constanze, Helm Paul C
Deutsches Herzzentrum der Charité, Department of Congenital Heart Disease-Pediatric Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany.
Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitéplatz 1, 10117 Berlin, Germany.
J Clin Med. 2025 May 15;14(10):3462. doi: 10.3390/jcm14103462.
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. 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. 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 ( < 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. 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.
新冠疫情对全球医疗服务的可及性产生了影响，先天性心脏病（CHD）等慢性病带来了独特的挑战。虽然已经对总体趋势进行了研究，但对于欧洲先天性心脏病患者所受影响却知之甚少。本研究评估了德国先天性心脏病患者及其家庭的生活状况、医疗服务利用情况和心理社会福祉，同时考虑了先天性心脏病的严重程度、性别差异以及随时间的变化。数据来自于先天性心脏病国家登记处（NRCHD）在2020年4月和2021年4月进行的两项横断面在线调查。调查对象为先天性心脏病患者及其亲属，评估医疗服务可及性、风险认知、与新冠疫情相关的知识以及心理社会影响。统计分析比较了不同性别、先天性心脏病严重程度和调查时期的回答。总共分析了6737份回答。由于担心感染，疫情早期医疗服务利用率下降，但在2021年有所部分恢复。感知到的健康风险从2020年的27.9%上升到2021年的38.7%（<0.001），同时心理社会困扰加剧。2020年与新冠疫情相关的知识更多，但对政府信息的信任度下降，而对医疗服务提供者的依赖增加。性别和先天性心脏病严重程度影响了医疗服务参与度和认知。本研究突出了先天性心脏病患者面临的挑战，强调了提供全面的、以患者为中心的护理的必要性。未来的干预措施应侧重于量身定制的沟通和支持策略，特别是针对弱势群体，以减轻未来健康危机的影响。
