{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T02:07:27Z","timestamp":1790820447087,"version":"4.1.0"},"reference-count":28,"publisher":"Cambridge University Press (CUP)","issue":"7","license":[{"start":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T00:00:00Z","timestamp":1784246400000},"content-version":"unspecified","delay-in-days":16,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec id=\"S1047951126111998_as1\">\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Knowledge of one\u2019s defect is fundamental in optimising outcomes in adults with CHD. We aimed to assess factors associated with defect knowledge and how that knowledge may impact outcomes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951126111998_as2\">\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>We performed a cross-sectional cohort study of adults with CHDs aged 18\u201382 years with intervention between 1982 and 2003 at one of 11 US centres in the Pediatric Cardiac Care Consortium. Participants completed a survey in 2021\u20132023 regarding disease knowledge and various health and quality of life outcomes. After comparing participants\u2019 self-identification of their defect to that recorded in the medical record, we identified demographic factors associated with correct identification and assessed the association of correct identification with outcomes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951126111998_as3\">\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      Among 2747 respondents with one of the 18 types of CHDs on the survey, 2271 (83%) correctly identified their defect. Those who correctly identified their defect were more likely to be non-Hispanic White (84% correct), were &lt;25 years of age (89%), have a higher level of education (86% for a bachelor\u2019s degree and 87% for a graduate degree), and have higher household income (85% for income \u2265$60,000). Those with severe two-ventricle disease were most likely to correctly identify their defect (88% correct); those with moderate disease were least likely (80% correct). Correct identification was associated with seeing a cardiologist in the last 5 years (74% vs. 63%,\n                      <jats:italic>p<\/jats:italic>\n                      &lt; 0.001) but was mixed for other outcomes.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951126111998_as4\">\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Improving a person\u2019s knowledge of their CHD may be an effective strategy for maintaining continuity of care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1017\/s1047951126111998","type":"journal-article","created":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T01:45:32Z","timestamp":1790819132000},"page":"1428-1435","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience"],"prefix":"10.1017","volume":"36","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2243-8367","authenticated-orcid":false,"given":"Matthew E.","family":"Oster","sequence":"first","affiliation":[{"id":[{"id":"https:\/\/ror.org\/050fhx250","id-type":"ROR","asserted-by":"publisher"}],"name":"Children\u2019s Healthcare of Atlanta"},{"name":"Emory University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kenneth","family":"Williams","sequence":"additional","affiliation":[{"name":"Emory University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kaivalya","family":"Gudooru","sequence":"additional","affiliation":[{"name":"Emory University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yanxu","family":"Yang","sequence":"additional","affiliation":[{"name":"Emory University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Osama","family":"Aldoss","sequence":"additional","affiliation":[{"name":"Medical College of Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mansi","family":"Gaitonde","sequence":"additional","affiliation":[{"name":"UT Southwestern Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6686-896X","authenticated-orcid":false,"given":"Gurumurthy","family":"Hiremath","sequence":"additional","affiliation":[{"name":"University of Minnesota Twin Cities"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9916-929X","authenticated-orcid":false,"given":"Jeffrey Phillip","family":"Jacobs","sequence":"additional","affiliation":[{"name":"University of Florida College of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anitha S.","family":"John","sequence":"additional","affiliation":[{"name":"Children\u2019s National Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0443-280X","authenticated-orcid":false,"given":"Deborah","family":"Kozik","sequence":"additional","affiliation":[{"name":"Norton Children\u2019s Hosp"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bradley","family":"Marino","sequence":"additional","affiliation":[{"name":"Cleveland Clinic Children\u2019s Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly","family":"McHugh","sequence":"additional","affiliation":[{"name":"Medical University of South Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Geetha","family":"Raghuveer","sequence":"additional","affiliation":[{"name":"Children\u2019s Mercy Hospitals and Clinics"},{"name":"University of Missouri Kansas City School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7389-359X","authenticated-orcid":false,"given":"James","family":"St. Louis","sequence":"additional","affiliation":[{"name":"Augusta University Medical College of Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4686-634X","authenticated-orcid":false,"given":"Lazaros","family":"Kochilas","sequence":"additional","affiliation":[{"id":[{"id":"https:\/\/ror.org\/050fhx250","id-type":"ROR","asserted-by":"publisher"}],"name":"Children\u2019s Healthcare of Atlanta"},{"name":"Emory University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2026,7,17]]},"reference":[{"key":"S1047951126111998_ref3","doi-asserted-by":"publisher","DOI":"10.1097\/MD.0000000000020593"},{"key":"S1047951126111998_ref6","doi-asserted-by":"publisher","DOI":"10.1097\/01.hjr.0000197472.81694.2b"},{"key":"S1047951126111998_ref18","doi-asserted-by":"publisher","DOI":"10.1097\/JCN.0b013e318260c308"},{"key":"S1047951126111998_ref22","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.120.018037"},{"key":"S1047951126111998_ref25","first-page":"493","article-title":"A life course approach to health literacy: the role of gender, educational attainment and lifetime cognitive capability","volume":"46","author":"Clouston","year":"2017","journal-title":"Age Ageing"},{"key":"S1047951126111998_ref5","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.122.060834"},{"key":"S1047951126111998_ref14","doi-asserted-by":"publisher","DOI":"10.1161\/CIR.0b013e318265ee8a"},{"key":"S1047951126111998_ref17","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjcard.2010.08.020"},{"key":"S1047951126111998_ref26","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijcard.2015.10.081"},{"key":"S1047951126111998_ref24","doi-asserted-by":"publisher","DOI":"10.1007\/s40271-018-0336-2"},{"key":"S1047951126111998_ref19","doi-asserted-by":"publisher","DOI":"10.1016\/S0025-6196(11)64665-X"},{"key":"S1047951126111998_ref4","doi-asserted-by":"publisher","DOI":"10.1053\/j.semperi.2017.12.006"},{"key":"S1047951126111998_ref13","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.87.6.1027"},{"key":"S1047951126111998_ref27","doi-asserted-by":"publisher","DOI":"10.3390\/jcm10163483"},{"key":"S1047951126111998_ref10","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2009-1162E"},{"key":"S1047951126111998_ref15","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951105002398"},{"key":"S1047951126111998_ref9","doi-asserted-by":"publisher","DOI":"10.1016\/j.appet.2015.04.010"},{"key":"S1047951126111998_ref1","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCRESAHA.116.309302"},{"key":"S1047951126111998_ref23","doi-asserted-by":"publisher","DOI":"10.1016\/j.ahj.2024.09.003"},{"key":"S1047951126111998_ref20","first-page":"641","article-title":"Adult patients\u2019 knowledge about their congenital heart disease","volume":"13","author":"Kantoch","year":"1997","journal-title":"Can J Cardiol"},{"key":"S1047951126111998_ref16","first-page":"192","article-title":"Quality of life and congenital heart disease in childhood and adolescence","volume":"102","author":"Bertoletti","year":"2014","journal-title":"Arq Bras Cardiol"},{"key":"S1047951126111998_ref12","doi-asserted-by":"publisher","DOI":"10.1016\/S1054-139X(96)00181-4"},{"key":"S1047951126111998_ref8","doi-asserted-by":"publisher","DOI":"10.1542\/pir.2018-0027"},{"key":"S1047951126111998_ref7","doi-asserted-by":"publisher","DOI":"10.1080\/10810730.2021.1884774"},{"key":"S1047951126111998_ref28","doi-asserted-by":"publisher","DOI":"10.1111\/acem.13244"},{"key":"S1047951126111998_ref2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2011.08.025"},{"key":"S1047951126111998_ref21","first-page":"74","article-title":"What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education","volume":"86","author":"Moons","year":"2001","journal-title":"Heart"},{"key":"S1047951126111998_ref11","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2013.09.006"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951126111998","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T01:46:08Z","timestamp":1790819168000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951126111998\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7]]},"references-count":28,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2026,7]]}},"alternative-id":["S1047951126111998"],"URL":"https:\/\/doi.org\/10.1017\/s1047951126111998","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"value":"1047-9511","type":"print"},{"value":"1467-1107","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7]]},"assertion":[{"value":"\u00a9 The Author(s), 2026. Published by Cambridge University Press","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}}]}}