{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T22:57:39Z","timestamp":1772751459989,"version":"3.50.1"},"reference-count":36,"publisher":"MDPI AG","issue":"10","license":[{"start":{"date-parts":[[2025,5,15]],"date-time":"2025-05-15T00:00:00Z","timestamp":1747267200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Deutsche Herzstiftung e.V","award":["01GI0601"],"award-info":[{"award-number":["01GI0601"]}]},{"name":"Deutsche Herzstiftung e.V","award":["01KX2140"],"award-info":[{"award-number":["01KX2140"]}]},{"DOI":"10.13039\/501100002347","name":"Competence Network for Congenital Heart Defects","doi-asserted-by":"publisher","award":["01GI0601"],"award-info":[{"award-number":["01GI0601"]}],"id":[{"id":"10.13039\/501100002347","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100002347","name":"Competence Network for Congenital Heart Defects","doi-asserted-by":"publisher","award":["01KX2140"],"award-info":[{"award-number":["01KX2140"]}],"id":[{"id":"10.13039\/501100002347","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100002347","name":"National Register for Congenital Heart Defects","doi-asserted-by":"publisher","award":["01GI0601"],"award-info":[{"award-number":["01GI0601"]}],"id":[{"id":"10.13039\/501100002347","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100002347","name":"National Register for Congenital Heart Defects","doi-asserted-by":"publisher","award":["01KX2140"],"award-info":[{"award-number":["01KX2140"]}],"id":[{"id":"10.13039\/501100002347","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>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 &lt; 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.<\/jats:p>","DOI":"10.3390\/jcm14103462","type":"journal-article","created":{"date-parts":[[2025,5,15]],"date-time":"2025-05-15T08:56:55Z","timestamp":1747299415000},"page":"3462","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Impact of the COVID-19 Pandemic on the Everyday Life and Healthcare of Patients with Congenital Heart Defects: Insights from Pandemic Onset to One Year Later"],"prefix":"10.3390","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-6920-3054","authenticated-orcid":false,"given":"Emily","family":"Sch\u00fctte","sequence":"first","affiliation":[{"name":"Deutsches Herzzentrum der Charit\u00e9, Department of Congenital Heart Disease\u2014Pediatric Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, Charit\u00e9platz 1, 10117 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Saskia Olivia","family":"Nasri","sequence":"additional","affiliation":[{"name":"Deutsches Herzzentrum der Charit\u00e9, Department of Congenital Heart Disease\u2014Pediatric Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, Charit\u00e9platz 1, 10117 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-0607-3529","authenticated-orcid":false,"given":"Anna-Lena","family":"Ehmann","sequence":"additional","affiliation":[{"name":"Deutsches Herzzentrum der Charit\u00e9, Department of Congenital Heart Disease\u2014Pediatric Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, Charit\u00e9platz 1, 10117 Berlin, Germany"},{"name":"National Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2095-1316","authenticated-orcid":false,"given":"Janina","family":"Semmler","sequence":"additional","affiliation":[{"name":"Department of Obstetrics, Charit\u00e9-Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7881-1557","authenticated-orcid":false,"given":"Felix","family":"Berger","sequence":"additional","affiliation":[{"name":"Deutsches Herzzentrum der Charit\u00e9, Department of Congenital Heart Disease\u2014Pediatric Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, Charit\u00e9platz 1, 10117 Berlin, Germany"},{"name":"Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulrike M. M.","family":"Bauer","sequence":"additional","affiliation":[{"name":"National Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katharina","family":"Schmitt","sequence":"additional","affiliation":[{"name":"Deutsches Herzzentrum der Charit\u00e9, Department of Congenital Heart Disease\u2014Pediatric Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, Charit\u00e9platz 1, 10117 Berlin, Germany"},{"name":"Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Deutsches Herzzentrum der Charit\u00e9, Department of Psycho-Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cornelia","family":"Tremblay","sequence":"additional","affiliation":[{"name":"National Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia","family":"Remmele","sequence":"additional","affiliation":[{"name":"Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center of Munich, Georg Brauchle Ring 62, 80992 Munich, Germany"},{"name":"Institute of Preventive Pediatrics Technical University Munich, Georg Brauchle Ring 62, 80992 Munich, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2836-6333","authenticated-orcid":false,"given":"Stefan","family":"Orwat","sequence":"additional","affiliation":[{"name":"Adult Congenital and Valvular Heart Disease Center, Department of Cardiology and Angiology, University Hospital Muenster, Albert-Schweitzer-Campus 1, 48149 Muenster, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gerhard-Paul","family":"Diller","sequence":"additional","affiliation":[{"name":"Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Adult Congenital and Valvular Heart Disease Center, Department of Cardiology and Angiology, University Hospital Muenster, Albert-Schweitzer-Campus 1, 48149 Muenster, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Constanze","family":"Pfitzer","sequence":"additional","affiliation":[{"name":"Deutsches Herzzentrum der Charit\u00e9, Department of Congenital Heart Disease\u2014Pediatric Cardiology, Augustenburger Platz 1, 13353 Berlin, Germany"},{"name":"Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, Charit\u00e9platz 1, 10117 Berlin, Germany"},{"name":"Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Paul C.","family":"Helm","sequence":"additional","affiliation":[{"name":"National Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2025,5,15]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1016\/j.bpa.2020.11.009","article-title":"Economic impact of COVID-19 pandemic on healthcare facilities and systems: International perspectives","volume":"35","author":"Kaye","year":"2021","journal-title":"Best. 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