{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T18:42:56Z","timestamp":1790880176559,"version":"4.1.0"},"reference-count":38,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"21","content-domain":{"domain":["www.ahajournals.org"],"crossmark-restriction":true},"short-container-title":["JAHA"],"published-print":{"date-parts":[[2024,11,5]]},"abstract":"<jats:sec xml:lang=\"en\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p xml:lang=\"en\">There is strong interest in the evaluation of longer\u2010term outcome metrics for congenital heart diseases (CHDs); however, registries focus on postoperative metrics.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec xml:lang=\"en\">\n                    <jats:title>Methods and Results<\/jats:title>\n                    <jats:p xml:lang=\"en\">Informed by user online discussion forums and scoping of national data, we selected sentinel CHDs and long\u2010term outcome metrics suitable for routine monitoring. We then developed sentinel CHD phenotypes and algorithms for identifying treatment pathway procedures using clinical codes. Finally, we calculated the metrics within a retrospective national cohort analysis. The 9 selected sentinel CHDs had a higher\u2010than\u2010average prevalence, typically involved surgery in infancy, and were associated with an increased risk of late mortality. The selected metrics of survival and reinterventions at 1, 5, and 10\u2009years were both important and feasible. The cohort included 29\u2009319 (41.3% of all operated CHD births) English and Welsh children born with sentinel CHDs in 2000 to 2022. Example metrics at age 10\u2009years included: survival\u2014hypoplastic left heart syndrome: 57.6% (95% CI, 54.9%\u201360.4%), functionally univentricular heart: 86.7% (95% CI, 84.6%\u201388.9%), transposition of the great arteries: 93.1% (95% CI, 92.2%\u201393.9%), pulmonary atresia: 81.0% (95% CI, 79.1%\u201382.9%), atrioventricular septal defect: 88.5% (95% CI, 87.5%\u201389.5%), tetralogy of Fallot: 95.1% (95% CI, 94.4%\u201395.8%), aortic stenosis: 94.4% (95% CI, 93.3%\u201395.6%), coarctation: 96.7% (95% CI, 96.2%\u201397.3%), and ventricular septal defect: 96.9% 95% CI, (96.4%\u201397.3%); and (2) cumulative incidence of reintervention\u2014hypoplastic left heart syndrome : 54.5% (95% CI, 51.5%\u201357.3%), functionally univentricular heart: 57.3% (95% CI, 53.9%\u201360.5%), transposition of the great arteries: 20.9% (95% CI, 19.5%\u201322.3%), pulmonary atresia: 66.8% (95% CI, 64.2%\u201369.1%), atrioventricular septal defect: 21.6% (20.3%\u201323.0%), tetralogy of Fallot: 26.6% (95% CI, 25.2%\u201328.0%), aortic stenosis: 31.2% (95% CI, 28.8%\u201333.6%), coarctation: 19.8% (95% CI, 18.6%\u201321.1%), and ventricular septal defect: 6.1% (95% CI, 5.5%\u20136.8%).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec xml:lang=\"en\">\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p xml:lang=\"en\">It is feasible to report important long\u2010term outcomes of survival and reintervention for sentinel CHDs using routinely collected procedure records, adding value to national audit.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1161\/jaha.124.035166","type":"journal-article","created":{"date-parts":[[2024,10,29]],"date-time":"2024-10-29T07:49:02Z","timestamp":1730188142000},"update-policy":"https:\/\/doi.org\/10.1161\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":7,"title":["Evaluating Long\u2010Term Outcomes of Children Undergoing Surgical Treatment for Congenital Heart Disease for National Audit in England and Wales"],"prefix":"10.1161","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0729-4959","authenticated-orcid":false,"given":"Kate L.","family":"Brown","sequence":"first","affiliation":[{"name":"University College London","place":["UK"]},{"name":"Great Ormond Street Hospital Biomedical Research Centre","place":["London, UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4456-2999","authenticated-orcid":false,"given":"Qi","family":"Huang","sequence":"additional","affiliation":[{"name":"University College London","place":["UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9085-7400","authenticated-orcid":false,"given":"Ferran","family":"Espuny\u2010Pujol","sequence":"additional","affiliation":[{"name":"University College London","place":["UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7698-6991","authenticated-orcid":false,"given":"Julie A.","family":"Taylor","sequence":"additional","affiliation":[{"name":"University College London","place":["UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4769-1211","authenticated-orcid":false,"given":"Jo","family":"Wray","sequence":"additional","affiliation":[{"name":"University College London","place":["UK"]},{"name":"Great Ormond Street Hospital Biomedical Research Centre","place":["London, UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2721-3279","authenticated-orcid":false,"given":"Carin","family":"van Doorn","sequence":"additional","affiliation":[{"name":"Paediatric Cardiac Surgery, Leeds General Infirmary","place":["Leeds, UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0456-1249","authenticated-orcid":false,"given":"Serban","family":"Stoica","sequence":"additional","affiliation":[{"name":"Bristol Children\u2019s Hospital","place":["Bristol, UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2857-1628","authenticated-orcid":false,"given":"Christina","family":"Pagel","sequence":"additional","affiliation":[{"name":"University College London","place":["UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1096-6242","authenticated-orcid":false,"given":"Rodney C. 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