{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T14:11:51Z","timestamp":1790863911671,"version":"4.1.0"},"reference-count":50,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2025,10,8]],"date-time":"2025-10-08T00:00:00Z","timestamp":1759881600000},"content-version":"am","delay-in-days":311,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"},{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-017"},{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-037"},{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-012"},{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-029"},{"start":{"date-parts":[[2024,12,1]],"date-time":"2024-12-01T00:00:00Z","timestamp":1733011200000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-004"}],"funder":[{"DOI":"10.13039\/100000050","name":"National Heart Lung and Blood Institute","doi-asserted-by":"publisher","award":["HL122392"],"award-info":[{"award-number":["HL122392"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.fr","clinicalkey.jp","clinicalkey.com.au","clinicalkey.es","clinicalkey.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["American Heart Journal"],"published-print":{"date-parts":[[2024,12]]},"DOI":"10.1016\/j.ahj.2024.09.003","type":"journal-article","created":{"date-parts":[[2024,9,17]],"date-time":"2024-09-17T17:43:56Z","timestamp":1726595036000},"page":"150-160","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":8,"special_numbering":"C","title":["Rationale and design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience"],"prefix":"10.1016","volume":"278","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2243-8367","authenticated-orcid":false,"given":"Matthew E.","family":"Oster","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yanxu","family":"Yang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline","family":"Shi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan","family":"Anderson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Knight","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Logan G.","family":"Spector","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Osamah","family":"Aldoss","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charles E.","family":"Canter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mansi","family":"Gaitonde","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gurumurthy","family":"Hiremath","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anitha","family":"John","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah J.","family":"Kozik","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bradley S.","family":"Marino","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly E.","family":"McHugh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Overman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Geetha","family":"Raghuveer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"St.","given":"James","family":"Louis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey P.","family":"Jacobs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Gurvitz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Grace","family":"Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J'Neka S.","family":"Claxton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristina","family":"Kuo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica M.","family":"Flores","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Romie N.","family":"Velani","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amanda","family":"Thomas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ann","family":"Mertens","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mason","family":"Basler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Violet","family":"Carey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Gavalas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Madison","family":"Johnson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anita","family":"Mathews","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Nelson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katrin","family":"O'Grady","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emily","family":"Riley","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Roesler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amber","family":"Sykes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Young","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lazaros K.","family":"Kochilas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"5","key":"10.1016\/j.ahj.2024.09.003_bib0001","doi-asserted-by":"crossref","first-page":"1385","DOI":"10.1016\/S0022-5223(03)00711-6","article-title":"Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory arrest trial","volume":"126","author":"Bellinger","year":"2003","journal-title":"J Thorac Cardiovasc Surg"},{"issue":"5","key":"10.1016\/j.ahj.2024.09.003_bib0002","doi-asserted-by":"crossref","first-page":"1082","DOI":"10.1542\/peds.105.5.1082","article-title":"Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome","volume":"105","author":"Mahle","year":"2000","journal-title":"Pediatrics"},{"issue":"2","key":"10.1016\/j.ahj.2024.09.003_bib0003","doi-asserted-by":"crossref","first-page":"327","DOI":"10.1007\/s00246-012-0450-1","article-title":"A predictive model for neurodevelopmental outcome after the Norwood procedure","volume":"34","author":"Mahle","year":"2013","journal-title":"Pediat Cardiol"},{"issue":"9","key":"10.1016\/j.ahj.2024.09.003_bib0004","doi-asserted-by":"crossref","first-page":"1143","DOI":"10.1161\/CIR.0b013e318265ee8a","article-title":"Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American heart association","volume":"126","author":"Marino","year":"2012","journal-title":"Circulation"},{"issue":"4","key":"10.1016\/j.ahj.2024.09.003_bib0005","doi-asserted-by":"crossref","first-page":"1377","DOI":"10.1016\/j.athoracsur.2012.11.076","article-title":"Surgery in adults with congenital heart disease: risk factors for morbidity and mortality","volume":"95","author":"Kogon","year":"2013","journal-title":"Ann Thorac Surg"},{"issue":"22","key":"10.1016\/j.ahj.2024.09.003_bib0006","doi-asserted-by":"crossref","first-page":"2254","DOI":"10.1161\/CIRCULATIONAHA.110.947002","article-title":"Mortality resulting from congenital heart disease among children and adults in the United States, 1999 to 2006","volume":"122","author":"Gilboa","year":"2010","journal-title":"Circulation"},{"issue":"19","key":"10.1016\/j.ahj.2024.09.003_bib0007","doi-asserted-by":"crossref","first-page":"2376","DOI":"10.1161\/01.CIR.103.19.2376","article-title":"Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979-1997","volume":"103","author":"Boneva","year":"2001","journal-title":"Circulation"},{"issue":"14","key":"10.1016\/j.ahj.2024.09.003_bib0008","doi-asserted-by":"crossref","first-page":"1149","DOI":"10.1016\/j.jacc.2010.03.085","article-title":"Changing mortality in congenital heart disease","volume":"56","author":"Khairy","year":"2010","journal-title":"J Am Coll Cardiol"},{"issue":"23","key":"10.1016\/j.ahj.2024.09.003_bib0009","doi-asserted-by":"crossref","first-page":"2395","DOI":"10.1161\/CIRCULATIONAHA.108.190811","volume":"118","author":"Warnes","year":"2008","journal-title":"Circulation"},{"issue":"3","key":"10.1016\/j.ahj.2024.09.003_bib0010","doi-asserted-by":"crossref","first-page":"425","DOI":"10.1016\/j.ahj.2003.05.003","article-title":"Prevalence of congenital heart disease","volume":"147","author":"Hoffman","year":"2004","journal-title":"Am Heart J"},{"issue":"2","key":"10.1016\/j.ahj.2024.09.003_bib0011","doi-asserted-by":"crossref","first-page":"163","DOI":"10.1161\/CIRCULATIONAHA.106.627224","article-title":"Congenital heart disease in the general population: changing prevalence and age distribution","volume":"115","author":"Marelli","year":"2007","journal-title":"Circulation"},{"issue":"4","key":"10.1016\/j.ahj.2024.09.003_bib0012","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1016\/j.pcad.2010.10.001","article-title":"From numbers to guidelines","volume":"53","author":"Marelli","year":"2011","journal-title":"Prog Cardiovasc Dis"},{"issue":"2","key":"10.1016\/j.ahj.2024.09.003_bib0013","doi-asserted-by":"crossref","first-page":"101","DOI":"10.1161\/CIRCULATIONAHA.115.019307","article-title":"Congenital heart defects in the united states: estimating the magnitude of the affected population in 2010","volume":"134","author":"Gilboa","year":"2016","journal-title":"Circulation"},{"issue":"5","key":"10.1016\/j.ahj.2024.09.003_bib0014","doi-asserted-by":"crossref","DOI":"10.1161\/JAHA.113.000256","article-title":"Public health science agenda for congenital heart defects: report from a center for disease control and prevention experts meeting","volume":"2","author":"Oster","year":"2013","journal-title":"J Am Heart Assoc"},{"issue":"16","key":"10.1016\/j.ahj.2024.09.003_bib0015","doi-asserted-by":"crossref","first-page":"1956","DOI":"10.1016\/j.jacc.2016.01.062","article-title":"Emerging research directions in adult congenital heart disease: a report from an NHLBI\/ACHA working group","volume":"67","author":"Gurvitz","year":"2016","journal-title":"J Am Coll Cardiol"},{"issue":"14","key":"10.1016\/j.ahj.2024.09.003_bib0016","doi-asserted-by":"crossref","first-page":"1410","DOI":"10.1161\/CIRCULATIONAHA.115.019506","article-title":"Report of the national heart, lung, and blood institute working group: an integrated network for congenital heart disease research","volume":"133","author":"Pasquali","year":"2016","journal-title":"Circulation"},{"issue":"4","key":"10.1016\/j.ahj.2024.09.003_bib0017","doi-asserted-by":"crossref","first-page":"229","DOI":"10.1002\/mpo.1316","article-title":"Study design and cohort characteristics of the childhood cancer survivor study: a multi-institutional collaborative project","volume":"38","author":"Robison","year":"2002","journal-title":"Med Pediat Oncol"},{"key":"10.1016\/j.ahj.2024.09.003_bib0018","unstructured":"Group CsO. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancer. In; 2013. http:\/\/www.survivorshipguidelines.org\/. Accessed 30 June, 2024."},{"issue":"14","key":"10.1016\/j.ahj.2024.09.003_bib0019","doi-asserted-by":"crossref","first-page":"2328","DOI":"10.1200\/JCO.2008.21.1425","article-title":"Late mortality among 5-year survivors of childhood cancer: a summary from the childhood cancer survivor study","volume":"27","author":"Armstrong","year":"2009","journal-title":"J Clin Oncol:"},{"key":"10.1016\/j.ahj.2024.09.003_bib0020","doi-asserted-by":"crossref","first-page":"106","DOI":"10.1016\/j.ahj.2019.12.021","article-title":"Rationale and design of CH strong: congenital heart survey to recognize outcomes, needs, and well-beinG","volume":"221","author":"Farr","year":"2020","journal-title":"Am Heart J"},{"issue":"4","key":"10.1016\/j.ahj.2024.09.003_bib0021","doi-asserted-by":"crossref","first-page":"577","DOI":"10.1161\/CIRCOUTCOMES.111.964841","article-title":"Putting the Pediatric cardiac care consortium in context: evaluation of scope and case mix compared with other reported surgical datasets","volume":"5","author":"Vinocur","year":"2013","journal-title":"Circ Cardiovasc Qual Outcomes"},{"key":"10.1016\/j.ahj.2024.09.003_bib0022","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1016\/j.ppedcard.2004.12.009","article-title":"A multi-center cardiac registry. A method to assess outcome of catheterization intervention or surgery","volume":"20","author":"Moller","year":"2005","journal-title":"Prog Pediat Cardiol"},{"issue":"8","key":"10.1016\/j.ahj.2024.09.003_bib0023","doi-asserted-by":"crossref","DOI":"10.1161\/JAHA.116.003783","article-title":"In-hospital vital status and heart transplants after intervention for congenital heart disease in the pediatric cardiac care consortium: completeness of ascertainment using the national death index and united network for organ sharing datasets","volume":"5","author":"Spector","year":"2016","journal-title":"J Am Heart Assoc"},{"key":"10.1016\/j.ahj.2024.09.003_bib0024","unstructured":"National Health Interview Survey. http:\/\/www.cdc.gov\/nchs\/nhis\/nhis_questionnaires.htm. Accessed 30 June, 2024."},{"key":"10.1016\/j.ahj.2024.09.003_bib0025","unstructured":"National Health and Nutrition Examination Survey. http:\/\/www.cdc.gov\/nchs\/nhanes\/. Accessed 30 June, 2024."},{"key":"10.1016\/j.ahj.2024.09.003_bib0026","unstructured":"Behavioral Risk Factor Surveillance System. http:\/\/www.cdc.gov\/brfss\/questionnaires\/. Accessed 30 June, 2024."},{"key":"10.1016\/j.ahj.2024.09.003_bib0027","unstructured":"American Community Survey. https:\/\/www.census.gov\/programs-surveys\/acs\/). Accessed 30 June, 2024."},{"key":"10.1016\/j.ahj.2024.09.003_bib0028","unstructured":"HealthMeasures: Transforming How Health Is Measured. https:\/\/www.healthmeasures.net\/explore-measurement-systems\/promis. Accessed 30 June, 2024."},{"issue":"3","key":"10.1016\/j.ahj.2024.09.003_bib0029","first-page":"395","article-title":"Canadian consensus conference on adult congenital heart disease 1996","volume":"14","author":"Connelly","year":"1998","journal-title":"Can J Cardiol"},{"issue":"21","key":"10.1016\/j.ahj.2024.09.003_bib0030","doi-asserted-by":"crossref","first-page":"2434","DOI":"10.1016\/j.jacc.2018.03.491","article-title":"Trends in long-term mortality after congenital heart surgery","volume":"71","author":"Spector","year":"2018","journal-title":"J Am Coll Cardiol"},{"issue":"5","key":"10.1016\/j.ahj.2024.09.003_bib0031","doi-asserted-by":"crossref","first-page":"1170","DOI":"10.1016\/S0735-1097(01)01272-4","article-title":"Task force 1: the changing profile of congenital heart disease in adult life","volume":"37","author":"Warnes","year":"2001","journal-title":"J Am Coll Cardiol"},{"issue":"6","key":"10.1016\/j.ahj.2024.09.003_bib0032","doi-asserted-by":"crossref","first-page":"1345","DOI":"10.1542\/peds.112.6.1345","article-title":"Long-term results of pediatric cardiac surgery in Finland: education, employment, marital status, and parenthood","volume":"112","author":"Nieminen","year":"2003","journal-title":"Pediatrics"},{"issue":"2","key":"10.1016\/j.ahj.2024.09.003_bib0033","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1017\/S1047951110001769","article-title":"Educational achievement among long-term survivors of congenital heart defects: a Danish population-based follow-up study","volume":"21","author":"Olsen","year":"2011","journal-title":"Cardiol Young"},{"issue":"6","key":"10.1016\/j.ahj.2024.09.003_bib0034","doi-asserted-by":"crossref","first-page":"573","DOI":"10.1111\/j.1747-0803.2011.00575.x","article-title":"High long-term morbidity in repaired aortic coarctation: weak association with residual arch obstruction","volume":"6","author":"Pedersen","year":"2011","journal-title":"Congenit Heart Dis"},{"issue":"1","key":"10.1016\/j.ahj.2024.09.003_bib0035","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"},{"issue":"6","key":"10.1016\/j.ahj.2024.09.003_bib0036","doi-asserted-by":"crossref","first-page":"549","DOI":"10.1007\/s10654-005-4264-9","article-title":"CONCOR, an initiative towards a national registry and DNA-bank of patients with congenital heart disease in the Netherlands: rationale, design, and first results","volume":"20","author":"van der Velde","year":"2005","journal-title":"Eur J Epidemiol"},{"issue":"20","key":"10.1016\/j.ahj.2024.09.003_bib0037","doi-asserted-by":"crossref","first-page":"2195","DOI":"10.1161\/CIRCULATIONAHA.111.027763","article-title":"Surgery in adults with congenital heart disease","volume":"124","author":"Zomer","year":"2011","journal-title":"Circulation"},{"issue":"3","key":"10.1016\/j.ahj.2024.09.003_bib0038","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1159\/000448513","article-title":"Long-Term Outcome of Patients with Perimembranous Ventricular Septal Defect: Results from the Belgian Registry on Adult Congenital Heart Disease","volume":"136","author":"Gabriels","year":"2016","journal-title":"Cardiology"},{"issue":"9","key":"10.1016\/j.ahj.2024.09.003_bib0039","doi-asserted-by":"crossref","first-page":"814","DOI":"10.1002\/bdra.23379","article-title":"Population-based study of hospital costs for hospitalizations of infants, children, and adults with a congenital heart defect, Arkansas 2006 to 2011","volume":"103","author":"Simeone","year":"2015","journal-title":"Birth defects Res A Clin Mol Teratol"},{"issue":"18","key":"10.1016\/j.ahj.2024.09.003_bib0040","doi-asserted-by":"crossref","DOI":"10.1161\/JAHA.119.013608","article-title":"Receipt of American heart association-recommended preconception health care among privately insured women with congenital heart defects, 2007-2013","volume":"8","author":"Farr","year":"2019","journal-title":"J Am Heart Assoc"},{"key":"10.1016\/j.ahj.2024.09.003_bib0041","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1016\/j.ijcard.2022.04.019","article-title":"Early-onset dementia among privately-insured adults with and without congenital heart defects in the United States, 2015-2017","volume":"358","author":"Downing","year":"2022","journal-title":"Int J Cardiol"},{"key":"10.1016\/j.ahj.2024.09.003_bib0042","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1016\/j.ijcard.2014.11.084","article-title":"Assessment of patterns of patient-reported outcomes in adults with congenital heart disease - international study (APPROACH-IS): rationale, design, and methods","volume":"179","author":"Apers","year":"2015","journal-title":"Int J Cardiol"},{"key":"10.1016\/j.ahj.2024.09.003_bib0043","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1016\/j.amjcard.2020.12.088","article-title":"Patient-reported outcomes in adults with congenital heart disease following hospitalization (from APPROACH-IS)","volume":"145","author":"Moons","year":"2021","journal-title":"Am J Cardiol"},{"issue":"6","key":"10.1016\/j.ahj.2024.09.003_bib0044","doi-asserted-by":"crossref","first-page":"197","DOI":"10.15585\/mmwr.mm7006a3","article-title":"Comorbidities among young adults with congenital heart defects: results from the congenital heart survey to recognize outcomes, needs, and well-being - Arizona, Arkansas, and metropolitan Atlanta, 2016-2019","volume":"70","author":"Oster","year":"2021","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"21","key":"10.1016\/j.ahj.2024.09.003_bib0045","doi-asserted-by":"crossref","DOI":"10.1161\/JAHA.121.022440","article-title":"Disability Among young adults with congenital heart defects: congenital heart survey to recognize outcomes, needs, and well-being 2016-2019","volume":"10","author":"Downing","year":"2021","journal-title":"J Am Heart Assoc"},{"key":"10.1016\/j.ahj.2024.09.003_bib0046","doi-asserted-by":"crossref","first-page":"42","DOI":"10.1016\/j.amjcard.2023.04.004","article-title":"Cardiology care and loss to follow-up among adults with congenital heart defects in CH strong","volume":"197","author":"Andrews","year":"2023","journal-title":"Am J Cardiol"},{"key":"10.1016\/j.ahj.2024.09.003_bib0047","article-title":"Health insurance status and access to healthcare among young adults with congenital heart disease: from the congenital heart survey to recognize outcomes, needs and well-being (CH STRONG), 2016-2019","author":"Bolin","year":"2023","journal-title":"Pediatr Cardiol"},{"issue":"7","key":"10.1016\/j.ahj.2024.09.003_bib0048","first-page":"740","article-title":"Reproductive health counseling and concerns among women with congenital heart defects with and without disabilities","volume":"32","author":"Farr","year":"2023","journal-title":"J Womens Health (Larchmt)"},{"issue":"1","key":"10.1016\/j.ahj.2024.09.003_bib0049","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1007\/s11886-023-02013-2","article-title":"Patient engagement in research: considerations in creating a registry for adults with congenital heart disease","volume":"26","author":"Phillippi","year":"2024","journal-title":"Curr Cardiol Rep"},{"key":"10.1016\/j.ahj.2024.09.003_bib50","doi-asserted-by":"crossref","DOI":"10.1001\/jamanetworkopen.2024.39629","article-title":"Patient-reported outcomes among adults with congenital heart disease in the congenital heart initiative registry","author":"Leezer","year":"2024","journal-title":"JAMA Netw Open"}],"container-title":["American Heart Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0002870324002369?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0002870324002369?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,2,3]],"date-time":"2025-02-03T09:01:10Z","timestamp":1738573270000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0002870324002369"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,12]]},"references-count":50,"alternative-id":["S0002870324002369"],"URL":"https:\/\/doi.org\/10.1016\/j.ahj.2024.09.003","relation":{},"ISSN":["0002-8703"],"issn-type":[{"value":"0002-8703","type":"print"}],"subject":[],"published":{"date-parts":[[2024,12]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Rationale and design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience","name":"articletitle","label":"Article Title"},{"value":"American Heart Journal","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.ahj.2024.09.003","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2024 Elsevier Inc. All rights are reserved, including those for text and data mining, AI training, and similar technologies.","name":"copyright","label":"Copyright"}]}}