{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T03:09:27Z","timestamp":1790392167706,"version":"4.1.0"},"reference-count":30,"publisher":"Oxford University Press (OUP)","license":[{"start":{"date-parts":[[2025,12,16]],"date-time":"2025-12-16T00:00:00Z","timestamp":1765843200000},"content-version":"am","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100003130","name":"Research Foundation Flanders","doi-asserted-by":"publisher","award":["G097516N"],"award-info":[{"award-number":["G097516N"]}],"id":[{"id":"10.13039\/501100003130","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003130","name":"Research Foundation Flanders","doi-asserted-by":"publisher","award":["12E9816N"],"award-info":[{"award-number":["12E9816N"]}],"id":[{"id":"10.13039\/501100003130","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003130","name":"Research Foundation Flanders","doi-asserted-by":"publisher","award":["1154719N"],"award-info":[{"award-number":["1154719N"]}],"id":[{"id":"10.13039\/501100003130","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100006282","name":"King Baudouin Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100006282","id-type":"DOI","asserted-by":"publisher"}]},{"name":"National Foundation on Research in Pediatric Cardiology"},{"DOI":"10.13039\/501100000860","name":"European Society of Cardiology","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000860","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Swedish Research Council for Health"},{"name":"Working Life and Welfare"},{"DOI":"10.13039\/501100006636","name":"FORTE","doi-asserted-by":"publisher","award":["STYA-2018\/0004"],"award-info":[{"award-number":["STYA-2018\/0004"]}],"id":[{"id":"10.13039\/501100006636","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>Although international recommendations suggest follow-up care for adult congenital heart disease (ACHD) patients should be provided in either specialized ACHD care or non-specialized ACHD care by a general cardiologist, these guidelines are variably implemented based on local resources. We investigated levels of care used by ACHD patients and predictors and outcomes of specialized ACHD follow-up, non-specialized ACHD follow-up, no cardiac follow-up, and no follow-up.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and results<\/jats:title>\n                    <jats:p>We performed a longitudinal study in 10 459 patients across three hospitals in Belgium, covering 79 065 patient-years. The outcomes of interest were the occurrence of heart failure, arrhythmias, valvular problems, infective endocarditis, myocardial ischaemia, thromboembolic events, and pulmonary arterial hypertension. We used multivariable logistic regression to assess predictors of cardiac follow-up and multivariable Cox regressions with time-varying lagged effects to explore associations with outcome. Specialized ACHD care was observed in 19% of all patient-years, non-specialized ACHD follow-up in 25% of patient-years, non-cardiac follow-up in 53%, and no follow-up in 3%. While patients with complex defects are assumed to receive follow-up in specialized ACHD cardiac care, this was the case in only 52% of their patient-years. Male sex, genetic syndrome, and no intervention history were predictors for being in higher levels of follow-up. Follow-up in specialized ACHD care was protective for heart failure and myocardial ischaemia. Any cardiac follow-up was protective for myocardial ischaemia and thromboembolic events.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Both levels of specialized and non-specialized ACHD cardiac follow-up care were protective for certain clinical outcomes, highlighting the importance of cardiac follow-up in ACHD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Lay summary<\/jats:title>\n                    <jats:p>This study looked at how adults living with congenital heart disease in Belgium are monitored over time and how the type of follow-up care they receive relates to their health outcomes.Key finding 1: Over the total period studied (counted in patient-years, meaning 1 year of follow-up for one patient), only about one in five of these patient-years took place in specialized congenital heart clinics. Even among those with the most complex heart conditions, only around half received continuous follow-up in specialized congenital heart disease centres. Many adults instead received care from general cardiologists and non-cardiac doctors or sometimes did not have routine follow-up.Key finding 2: Adults who received regular cardiac follow-up\u2014especially in specialized congenital heart disease centres\u2014were less likely to develop serious problems such as heart failure, heart attacks, or blood clots, compared with those who had no follow-up.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/eurjpc\/zwaf763","type":"journal-article","created":{"date-parts":[[2025,12,14]],"date-time":"2025-12-14T12:44:47Z","timestamp":1765716287000},"source":"Crossref","is-referenced-by-count":4,"title":["Preventing cardiovascular complications in adults with congenital heart disease: predictors and outcomes of the levels of follow-up care"],"prefix":"10.1093","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1530-0869","authenticated-orcid":false,"given":"Fouke","family":"Ombelet","sequence":"first","affiliation":[{"name":"Department of Neurology, University Hospitals Leuven , Leuven ,","place":["Belgium"]},{"name":"Neuroscience Department, Leuven Brain Institute, KU Leuven , Leuven ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8732-9455","authenticated-orcid":false,"given":"Ruben","family":"Willems","sequence":"additional","affiliation":[{"name":"Department of Public Health and Primary Care, Interuniversity Centre for Health Economics Research (I-CHER), Ghent University , Gent ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6875-8366","authenticated-orcid":false,"given":"Steffen","family":"Fieuws","sequence":"additional","affiliation":[{"name":"KU Leuven Department of Public Health and Primary Care, Biostatistics and Statistical Bioinformatics Centre, KU Leuven , Leuven ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3421-5256","authenticated-orcid":false,"given":"Eva","family":"Goossens","sequence":"additional","affiliation":[{"name":"KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven , Kapucijnenvoer 7 box 7001, Leuven B-3000 ,","place":["Belgium"]},{"name":"Faculty of Medicine and Health Sciences, Centre for Research and Innovation in Care, Division of Nursing and Midwifery, University of Antwerp , Antwerp ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8278-2437","authenticated-orcid":false,"given":"Katya","family":"De Groote","sequence":"additional","affiliation":[{"name":"Department of Pediatric Cardiology, University Hospital Ghent , Ghent ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5850-5413","authenticated-orcid":false,"given":"Werner","family":"Budts","sequence":"additional","affiliation":[{"name":"KU Leuven Department of Cardiovascular Sciences, KU Leuven \u2013 University of Leuven , Leuven ,","place":["Belgium"]},{"name":"Division of Congenital and Structural Cardiology, University Hospitals Leuven , Leuven ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0900-6674","authenticated-orcid":false,"given":"St\u00e9phane","family":"Moniotte","sequence":"additional","affiliation":[{"name":"Pediatric and Congenital Cardiology Division, St-Luc University Hospital , Brussels ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8145-2142","authenticated-orcid":false,"given":"Mich\u00e8le","family":"de Hosson","sequence":"additional","affiliation":[{"name":"Department of Adult Congenital Cardiology, Ghent University Hospital , Ghent ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8975-4455","authenticated-orcid":false,"given":"Liesbet","family":"Van Bulck","sequence":"additional","affiliation":[{"name":"KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven , Kapucijnenvoer 7 box 7001, Leuven B-3000 ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8878-1507","authenticated-orcid":false,"given":"Julie","family":"De Backer","sequence":"additional","affiliation":[{"name":"Department of Public Health and Primary Care, Interuniversity Centre for Health Economics Research (I-CHER), Ghent University , Gent ,","place":["Belgium"]},{"name":"Department of Adult Congenital Cardiology, Ghent University Hospital , Ghent ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8305-7210","authenticated-orcid":false,"given":"Lieven","family":"Annemans","sequence":"additional","affiliation":[{"name":"Department of Public Health and Primary Care, Interuniversity Centre for Health Economics Research (I-CHER), Ghent University , Gent ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1784-8206","authenticated-orcid":false,"given":"Ariane","family":"Marelli","sequence":"additional","affiliation":[{"name":"McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), McGill University Health Center , H3A 0G4, Montr\u00e9al (Quebec) ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8609-4516","authenticated-orcid":false,"given":"Philip","family":"Moons","sequence":"additional","affiliation":[{"name":"KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven , Kapucijnenvoer 7 box 7001, Leuven B-3000 ,","place":["Belgium"]},{"name":"Gothenburg Centre of Person-Centred Care, Sahlgrenska Academy, University of Gothenburg , Arvid Wallgrens backe 1, 413 46 Gothenburg ,","place":["Sweden"]},{"name":"Department of Pediatrics and Child Health, University of Cape Town , Klipfontein Rd, Rondebosch, 7700 Cape Town ,","place":["South Africa"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"BELCODAC consortium","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lieven","family":"Annemans","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Werner","family":"Budts","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"De Backer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katya","family":"De Groote","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mich\u00e8le","family":"de Hosson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"De 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