{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T03:19:45Z","timestamp":1791256785290,"version":"4.1.0"},"reference-count":20,"publisher":"Cambridge University Press (CUP)","issue":"9","license":[{"start":{"date-parts":[[2025,9,5]],"date-time":"2025-09-05T00:00:00Z","timestamp":1757030400000},"content-version":"unspecified","delay-in-days":4,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>In the United States, about 1 in 100 children are born with a CHD, with complex cases requiring intensive, lifelong care. Despite medical severity, little data exist on economic burden, driving low impact scores in federal research funding applications, a lack of specific funding appropriations, and minimal research investment. Here, the financial and economic impact was quantified by identifying direct, indirect, and mortality costs of six complex CHDs and compared to two common cardiovascular diseases: coronary heart disease and congestive heart failure. Despite lower prevalence, complex CHDs exert disproportionate, often invisible financial burdens on families and the healthcare system. Annually, per patient, direct and indirect costs of complex CHDs are four times higher than coronary heart disease and eight times higher than congestive heart failure. The average lifetime direct and indirect cost for complex CHDs is $2.1 million per patient\u2014nearly 44 times that of congestive heart failure. 31% of lifetime costs for complex CHDs are incurred in the first five years of life with families paying an average of $190,000 out-of-pocket. Many caregivers are forced to reduce employment hours, change jobs, or completely withdraw from the labour force. The annual national cost of complex CHDs is $74 billion, and the total lifetime economic impact exceeds $3.35 trillion. Systemic under-recognition has led to chronic underinvestment in research and stagnant patient outcomes. The biomedical community can catalyse an interdisciplinary response from research institutions, policymakers, and clinical systems to alleviate the economic and human toll of complex CHDs.<\/jats:p>","DOI":"10.1017\/s1047951125109256","type":"journal-article","created":{"date-parts":[[2025,9,5]],"date-time":"2025-09-05T08:40:20Z","timestamp":1757061620000},"page":"1751-1758","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":14,"title":["The economic burden of complex CHD in the United States"],"prefix":"10.1017","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0009-0009-9248-7621","authenticated-orcid":false,"given":"Diane M.","family":"Pickles","sequence":"first","affiliation":[{"name":"Additional Ventures"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-3606-2285","authenticated-orcid":false,"given":"Kirstie","family":"Keller","sequence":"additional","affiliation":[{"name":"Additional Ventures"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2025,9,5]]},"reference":[{"key":"S1047951125109256_ref2","doi-asserted-by":"publisher","DOI":"10.1002\/bdra.23262"},{"key":"S1047951125109256_ref6","doi-asserted-by":"publisher","DOI":"10.1111\/chd.12605"},{"key":"S1047951125109256_ref7","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2024.04.001"},{"key":"S1047951125109256_ref9","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.115.019307"},{"key":"S1047951125109256_ref16","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.115.017202"},{"key":"S1047951125109256_ref15","unstructured":"15. U.S. Department of Education. Chronic absenteeism [online]. n.d. Accessed 2025 Mar 20. Available from: https:\/\/www.ed.gov\/teaching-and-administration\/supporting-students\/chronic-absenteeism."},{"key":"S1047951125109256_ref18","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.108.839464"},{"key":"S1047951125109256_ref19","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2025.04.028"},{"key":"S1047951125109256_ref3","doi-asserted-by":"crossref","first-page":"1881","DOI":"10.1056\/NEJM199906173402406","article-title":"The relation between funding by the national institutes of health and the burden of disease","volume":"340","author":"Ary","year":"1999","journal-title":"N Engl J Med"},{"key":"S1047951125109256_ref1","doi-asserted-by":"publisher","DOI":"10.1016\/S0735-1097(02)01886-7"},{"key":"S1047951125109256_ref14","doi-asserted-by":"publisher","DOI":"10.1161\/circ.132.suppl_3.17368"},{"key":"S1047951125109256_ref4","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-021-02120-9"},{"key":"S1047951125109256_ref11","unstructured":"11. National Heart, Lung, and Blood Institute. Coronary heart disease [online]. n.d. Accessed 2025 Mar 20. Available from: https:\/\/www.nhlbi.nih.gov\/health\/coronary-heart-disease#:~:text=Coronary%20heart%20disease%20is%20a,disease%20or%20ischemic%20heart%20disease."},{"key":"S1047951125109256_ref12","doi-asserted-by":"publisher","DOI":"10.1161\/CIR.0000000000000757"},{"key":"S1047951125109256_ref5","unstructured":"5. National Institutes of Health. Categorical spending [online]. n.d. Accessed 2025 Mar 20. Available from: https:\/\/report.nih.gov\/funding\/categorical-spending#\/."},{"key":"S1047951125109256_ref8","unstructured":"8. U.S. Department of Transportation. Revised Departmental Guidance on Valuation of a Statistical Life in Economic Analysis [online]. n.d. Accessed 2025 Mar 20. Available from: https:\/\/www.transportation.gov\/office-policy\/transportation-policy\/revised-departmental-guidance-on-valuation-of-a-statistical-life-in-economic-analysis."},{"key":"S1047951125109256_ref20","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.123.065192"},{"key":"S1047951125109256_ref17","doi-asserted-by":"publisher","DOI":"10.1007\/s11883-023-01093-3"},{"key":"S1047951125109256_ref13","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijcard.2019.06.001"},{"key":"S1047951125109256_ref10","volume-title":"The Costs of Chronic Disease in the US","author":"Waters","year":"2018"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951125109256","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,3]],"date-time":"2025-10-03T11:56:28Z","timestamp":1759492588000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951125109256\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,9]]},"references-count":20,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2025,9]]}},"alternative-id":["S1047951125109256"],"URL":"https:\/\/doi.org\/10.1017\/s1047951125109256","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"value":"1047-9511","type":"print"},{"value":"1467-1107","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,9]]},"assertion":[{"value":"\u00a9 The Author(s), 2025. Published by Cambridge University Press","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https:\/\/creativecommons.org\/licenses\/by\/4.0\/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.","name":"license","label":"License","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This content has been made available to all.","name":"free","label":"Free to read"}]}}