{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,19]],"date-time":"2026-09-19T04:35:09Z","timestamp":1789792509948,"version":"4.0.1"},"reference-count":43,"publisher":"Elsevier BV","issue":"2","license":[{"start":{"date-parts":[[2023,2,1]],"date-time":"2023-02-01T00:00:00Z","timestamp":1675209600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2023,2,1]],"date-time":"2023-02-01T00:00:00Z","timestamp":1675209600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"funder":[{"DOI":"10.13039\/100006279","name":"Abbott Cardiovascular","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006279","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100005693","name":"Parent Project Muscular Dystrophy","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100005693","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jhltonline.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["The Journal of Heart and Lung Transplantation"],"published-print":{"date-parts":[[2023,2]]},"DOI":"10.1016\/j.healun.2022.09.003","type":"journal-article","created":{"date-parts":[[2022,9,19]],"date-time":"2022-09-19T22:24:46Z","timestamp":1663626286000},"page":"246-254","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":12,"title":["Initial multicenter experience with ventricular assist devices in children and young adults with muscular dystrophy: An ACTION registry analysis"],"prefix":"10.1016","volume":"42","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0144-1433","authenticated-orcid":false,"given":"Deipanjan","family":"Nandi","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2341-0913","authenticated-orcid":false,"given":"Scott R.","family":"Auerbach","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7026-3058","authenticated-orcid":false,"given":"Neha","family":"Bansal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Holger","family":"Buchholz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Conway","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul","family":"Esteso","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0484-5281","authenticated-orcid":false,"given":"Beth D.","family":"Kaufman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ashwin K.","family":"Lal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabrina P.","family":"Law","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Lorts","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0851-7496","authenticated-orcid":false,"given":"Lindsay J.","family":"May","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Mehegan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6236-2192","authenticated-orcid":false,"given":"Deepa","family":"Mokshagundam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David L.S.","family":"Morales","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3012-5464","authenticated-orcid":false,"given":"Matthew J.","family":"O'Connor","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6342-2759","authenticated-orcid":false,"given":"David N.","family":"Rosenthal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Muhammad F.","family":"Shezad","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen E.","family":"Simpson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9047-7934","authenticated-orcid":false,"given":"David L.","family":"Sutcliffe","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Vanderpluym","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carol A.","family":"Wittlieb-Weber","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1803-7242","authenticated-orcid":false,"given":"Farhan","family":"Zafar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Cripe","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8195-0694","authenticated-orcid":false,"given":"Chet R.","family":"Villa","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.healun.2022.09.003_bib0001","doi-asserted-by":"crossref","first-page":"e200","DOI":"10.1161\/CIR.0000000000000526","article-title":"Management of cardiac involvement associated with neuromuscular diseases: a scientific statement from the American Heart Association","volume":"136","author":"Feingold","year":"2017","journal-title":"Circulation"},{"key":"10.1016\/j.healun.2022.09.003_bib0002","doi-asserted-by":"crossref","first-page":"926","DOI":"10.1016\/S0960-8966(02)00140-2","article-title":"Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation","volume":"12","author":"Eagle","year":"2002","journal-title":"Neuromuscul Disord NMD"},{"key":"10.1016\/j.healun.2022.09.003_bib0003","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1016\/j.nmd.2014.08.008","article-title":"Implantation of a left ventricular assist device as a destination therapy in Duchenne muscular dystrophy patients with end stage cardiac failure: management and lessons learned","volume":"25","author":"Iodice","year":"2015","journal-title":"Neuromuscul Disord NMD"},{"key":"10.1016\/j.healun.2022.09.003_bib0004","doi-asserted-by":"crossref","first-page":"246","DOI":"10.1097\/MAT.0000000000000050","article-title":"Implantation of the HeartMate II and HeartWare left ventricular assist devices in patients with Duchenne muscular dystrophy: lessons learned from the first applications","volume":"60","author":"Ryan","year":"2014","journal-title":"ASAIO J"},{"key":"10.1016\/j.healun.2022.09.003_bib0005","doi-asserted-by":"crossref","first-page":"745","DOI":"10.1016\/j.nmd.2006.07.021","article-title":"Outpatient continuous inotrope infusion as an adjunct to heart failure therapy in Duchenne muscular dystrophy","volume":"16","author":"Cripe","year":"2006","journal-title":"Neuromuscul Disord NMD"},{"key":"10.1016\/j.healun.2022.09.003_bib0006","doi-asserted-by":"crossref","first-page":"1819","DOI":"10.1016\/j.athoracsur.2020.09.003","article-title":"Fourth annual pediatric interagency registry for mechanical circulatory support (pedimacs) report","volume":"110","author":"Morales","year":"2020","journal-title":"Ann Thorac Surg"},{"key":"10.1016\/j.healun.2022.09.003_bib0007","doi-asserted-by":"crossref","first-page":"669","DOI":"10.1016\/j.jtcvs.2016.08.016","article-title":"Left ventricular assist device as destination therapy in cardiac end-stage dystrophinopathies: midterm results","volume":"153","author":"Perri","year":"2017","journal-title":"J Thorac Cardiovasc Surg"},{"key":"10.1016\/j.healun.2022.09.003_bib0008","doi-asserted-by":"crossref","first-page":"379","DOI":"10.1002\/ehf2.12160","article-title":"Implantation of a left ventricular assist device to provide long-term support for end-stage Duchenne muscular dystrophy-associated cardiomyopathy: LVAD support for DMD-associated cardiomyopathy","volume":"4","author":"Stoller","year":"2017","journal-title":"ESC Heart Fail"},{"key":"10.1016\/j.healun.2022.09.003_bib0009","first-page":"441","article-title":"The creation of a pediatric health care learning network: the ACTION quality improvement collaborative","volume":"66","author":"Lorts","year":"2020","journal-title":"ASAIO J Am Soc Artif Intern Organs 1992"},{"key":"10.1016\/j.healun.2022.09.003_bib0010","doi-asserted-by":"crossref","first-page":"e1145","DOI":"10.1161\/CIR.0000000000000507","article-title":"Recommendations for the use of mechanical circulatory support: ambulatory and community patient care: a scientific statement from the American Heart Association","volume":"135","author":"Cook","year":"2017","journal-title":"Circulation"},{"key":"10.1016\/j.healun.2022.09.003_bib0011","doi-asserted-by":"crossref","first-page":"977","DOI":"10.1007\/s00246-021-02807-7","article-title":"Current practices in treating cardiomyopathy and heart failure in Duchenne muscular dystrophy (DMD): understanding care practices in order to optimize DMD heart failure through ACTION","volume":"43","author":"Villa","year":"2022","journal-title":"Pediatr Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0012","doi-asserted-by":"crossref","DOI":"10.1161\/JAHA.117.006340","article-title":"Predictors of death in adults with Duchenne muscular dystrophy-associated cardiomyopathy","volume":"6","author":"Cheeran","year":"2017","journal-title":"J Am Heart Assoc"},{"key":"10.1016\/j.healun.2022.09.003_bib0013","doi-asserted-by":"crossref","first-page":"764","DOI":"10.1007\/s00246-020-02309-y","article-title":"Risk factors for cardiac and non-cardiac causes of death in males with Duchenne muscular dystrophy","volume":"41","author":"Wittlieb-Weber","year":"2020","journal-title":"Pediatr Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0014","doi-asserted-by":"crossref","first-page":"103","DOI":"10.1007\/s10741-009-9156-8","article-title":"Cardiomyopathy in Duchenne muscular dystrophy: pathogenesis and therapeutics","volume":"15","author":"Fayssoil","year":"2010","journal-title":"Heart Fail Rev"},{"key":"10.1016\/j.healun.2022.09.003_bib0015","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1016\/j.ppedcard.2019.01.001","article-title":"Use of advanced heart failure therapies in Duchenne muscular dystrophy","volume":"53","author":"Wittlieb-Weber","year":"2019","journal-title":"Prog Pediatr Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0016","doi-asserted-by":"crossref","first-page":"573","DOI":"10.1016\/j.healun.2020.02.007","article-title":"Early experience with the HeartMate 3 continuous-flow ventricular assist device in pediatric patients and patients with congenital heart disease: a multicenter registry analysis","volume":"39","author":"O'Connor","year":"2020","journal-title":"J Heart Lung Transplant Off Publ Int Soc Heart Transplant"},{"key":"10.1016\/j.healun.2022.09.003_bib0017","doi-asserted-by":"crossref","first-page":"1763","DOI":"10.1016\/j.athoracsur.2021.10.001","article-title":"Fifth annual pediatric interagency registry for mechanical circulatory support (pedimacs) report","volume":"112","author":"Rossano","year":"2021","journal-title":"Ann Thorac Surg"},{"key":"10.1016\/j.healun.2022.09.003_bib0018","doi-asserted-by":"crossref","first-page":"722","DOI":"10.1016\/j.athoracsur.2021.12.011","article-title":"Twelfth Interagency Registry for Mechanically Assisted Circulatory Support Report: readmissions after left ventricular assist device","volume":"113","author":"Shah","year":"2022","journal-title":"Ann Thorac Surg"},{"key":"10.1016\/j.healun.2022.09.003_bib0019","first-page":"675","article-title":"HVAD usage and outcomes in the current pediatric ventricular assist device field: an advanced cardiac therapies improving outcomes network (ACTION) analysis","volume":"67","author":"Auerbach","year":"2021","journal-title":"ASAIO J Am Soc Artif Intern Organs 1992"},{"key":"10.1016\/j.healun.2022.09.003_bib0020","doi-asserted-by":"crossref","first-page":"170","DOI":"10.1136\/adc.2002.019562","article-title":"Outcome of children with neuromuscular disease admitted to paediatric intensive care","volume":"89","author":"Yates","year":"2004","journal-title":"Arch Dis Child"},{"key":"10.1016\/j.healun.2022.09.003_bib0021","doi-asserted-by":"crossref","first-page":"1007","DOI":"10.1080\/09638288.2017.1292322","article-title":"Clinical features of children and adults with a muscular dystrophy using powered indoor\/outdoor wheelchairs: disease features, comorbidities and complications of disability","volume":"40","author":"Frank","year":"2018","journal-title":"Disabil Rehabil"},{"key":"10.1016\/j.healun.2022.09.003_bib0022","doi-asserted-by":"crossref","first-page":"948","DOI":"10.1016\/j.jacc.2012.12.008","article-title":"All-cause mortality and cardiovascular outcomes with prophylactic steroid therapy in Duchenne muscular dystrophy","volume":"61","author":"Schram","year":"2013","journal-title":"J Am Coll Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0023","doi-asserted-by":"crossref","first-page":"897","DOI":"10.1016\/j.nmd.2018.07.004","article-title":"Longitudinal pulmonary function testing outcome measures in Duchenne muscular dystrophy: long-term natural history with and without glucocorticoids","volume":"28","author":"McDonald","year":"2018","journal-title":"Neuromuscul Disord NMD"},{"key":"10.1016\/j.healun.2022.09.003_bib0024","doi-asserted-by":"crossref","DOI":"10.1093\/braincomms\/fcab075","article-title":"International retrospective natural history study of LMNA-related congenital muscular dystrophy","volume":"3","author":"Ben Yaou","year":"2021","journal-title":"Brain Commun"},{"key":"10.1016\/j.healun.2022.09.003_bib0025","doi-asserted-by":"crossref","first-page":"904","DOI":"10.1016\/j.ejpn.2016.07.020","article-title":"Why are some patients with Duchenne muscular dystrophy dying young: an analysis of causes of death in North East England","volume":"20","author":"Van Ruiten","year":"2016","journal-title":"Eur J Paediatr Neurol EJPN Off J Eur Paediatr Neurol Soc"},{"key":"10.1016\/j.healun.2022.09.003_bib0026","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1016\/j.rehab.2013.06.002","article-title":"Evolution of life expectancy of patients with Duchenne muscular dystrophy at AFM Yolaine de Kepper centre between 1981 and 2011","volume":"56","author":"Kieny","year":"2013","journal-title":"Ann Phys Rehabil Med"},{"key":"10.1016\/j.healun.2022.09.003_bib0027","doi-asserted-by":"crossref","first-page":"527","DOI":"10.1002\/ehf2.12165","article-title":"Clinical profiles and prognosis of acute heart failure in adult patients with dystrophinopathies on home mechanical ventilation","volume":"4","author":"Fayssoil","year":"2017","journal-title":"ESC Heart Fail"},{"key":"10.1016\/j.healun.2022.09.003_bib0028","doi-asserted-by":"crossref","first-page":"878","DOI":"10.1007\/s00246-016-1362-2","article-title":"Relationship of right ventricular size and function with respiratory status in Duchenne muscular dystrophy","volume":"37","author":"Mehmood","year":"2016","journal-title":"Pediatr Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0029","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1016\/j.jpeds.2019.02.037","article-title":"Comparison of pulmonary function decline in steroid-treated and steroid-na\u00efve patients with Duchenne muscular dystrophy","volume":"210","author":"Sawnani","year":"2019","journal-title":"J Pediatr"},{"key":"10.1016\/j.healun.2022.09.003_bib0030","doi-asserted-by":"crossref","first-page":"2199","DOI":"10.1002\/ehf2.13970","article-title":"The association between cardiac involvement and long-term clinical outcomes in patients with Duchenne muscular dystrophy","volume":"9","author":"Cha","year":"2022","journal-title":"ESC Heart Fail"},{"key":"10.1016\/j.healun.2022.09.003_bib0031","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1007\/s10654-021-00819-4","article-title":"One in five patients with Duchenne muscular dystrophy dies from other causes than cardiac or respiratory failure","volume":"37","author":"Wahlgren","year":"2022","journal-title":"Eur J Epidemiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0032","doi-asserted-by":"crossref","first-page":"531","DOI":"10.1038\/nrcardio.2013.105","article-title":"Dilated cardiomyopathy: the complexity of a diverse genetic architecture","volume":"10","author":"Hershberger","year":"2013","journal-title":"Nat Rev Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0033","series-title":"I Have Muscular Dystrophy, And It's Okay!","author":"Bauer","year":"2021"},{"key":"10.1016\/j.healun.2022.09.003_bib0034","unstructured":"Muscular dystrophy patients teach you about their VADs! (ACTION Learning Network) - YouTube. Accessed April 18, 2022. https:\/\/www.youtube.com\/watch?v=L699wEaoBas"},{"key":"10.1016\/j.healun.2022.09.003_bib0035","doi-asserted-by":"crossref","first-page":"1245","DOI":"10.1016\/S0735-1097(00)00531-3","article-title":"Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure","volume":"35","author":"Green","year":"2000","journal-title":"J Am Coll Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0036","doi-asserted-by":"crossref","first-page":"e1559","DOI":"10.1542\/peds.2012-0858","article-title":"Health-related quality of life in children and adolescents with Duchenne muscular dystrophy","volume":"130","author":"Uzark","year":"2012","journal-title":"Pediatrics"},{"key":"10.1016\/j.healun.2022.09.003_bib0037","doi-asserted-by":"crossref","first-page":"263","DOI":"10.1186\/s12955-020-01511-z","article-title":"Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments","volume":"18","author":"Powell","year":"2020","journal-title":"Health Qual Life Outcomes"},{"key":"10.1016\/j.healun.2022.09.003_bib0038","doi-asserted-by":"crossref","first-page":"e2438","DOI":"10.1212\/WNL.0000000000011896","article-title":"Development of a new quality of life measure for Duchenne muscular dystrophy using mixed methods: the DMD-QoL","volume":"96","author":"Powell","year":"2021","journal-title":"Neurology"},{"key":"10.1016\/j.healun.2022.09.003_bib0039","first-page":"593","article-title":"Characterizing health state utilities associated with Duchenne muscular dystrophy: a systematic review","volume":"29","author":"Szabo","year":"2020","journal-title":"Qual Life Res Int J Qual Life Asp Treat Care Rehabil"},{"key":"10.1016\/j.healun.2022.09.003_bib0040","doi-asserted-by":"crossref","first-page":"20","DOI":"10.1186\/1747-5341-3-20","article-title":"Ethical challenges with the left ventricular assist device as a destination therapy","volume":"3","author":"Rizzieri","year":"2008","journal-title":"Philos Ethics Humanit Med"},{"key":"10.1016\/j.healun.2022.09.003_bib0041","doi-asserted-by":"crossref","first-page":"1242","DOI":"10.1007\/s00246-018-1889-5","article-title":"Cost-effectiveness of ventricular assist device destination therapy for advanced heart failure in Duchenne muscular dystrophy","volume":"39","author":"Magnetta","year":"2018","journal-title":"Pediatr Cardiol"},{"key":"10.1016\/j.healun.2022.09.003_bib0042","doi-asserted-by":"crossref","DOI":"10.1161\/CIRCHEARTFAILURE.118.005447","article-title":"Heart transplantation in muscular dystrophy patients: Is it a viable option?","volume":"13","author":"Wells","year":"2020","journal-title":"Circ Heart Fail"},{"key":"10.1016\/j.healun.2022.09.003_bib0043","doi-asserted-by":"crossref","DOI":"10.1161\/CIRCHEARTFAILURE.119.005872","article-title":"Keeping an open mind: heart transplant in patients with muscular dystrophy","volume":"13","author":"Moayedi","year":"2020","journal-title":"Circ Heart Fail"}],"container-title":["The Journal of Heart and Lung Transplantation"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1053249822021179?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1053249822021179?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,20]],"date-time":"2025-10-20T08:46:27Z","timestamp":1760949987000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1053249822021179"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,2]]},"references-count":43,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2023,2]]}},"alternative-id":["S1053249822021179"],"URL":"https:\/\/doi.org\/10.1016\/j.healun.2022.09.003","relation":{},"ISSN":["1053-2498"],"issn-type":[{"value":"1053-2498","type":"print"}],"subject":[],"published":{"date-parts":[[2023,2]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Initial multicenter experience with ventricular assist devices in children and young adults with muscular dystrophy: An ACTION registry analysis","name":"articletitle","label":"Article Title"},{"value":"The Journal of Heart and Lung Transplantation","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.healun.2022.09.003","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2022 International Society for Heart and Lung Transplantation. All rights reserved.","name":"copyright","label":"Copyright"}]}}