{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T19:20:42Z","timestamp":1789586442216,"version":"build-2803163510"},"reference-count":50,"publisher":"Elsevier BV","issue":"4","license":[{"start":{"date-parts":[[2020,12,1]],"date-time":"2020-12-01T00:00:00Z","timestamp":1606780800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2020,12,1]],"date-time":"2020-12-01T00:00:00Z","timestamp":1606780800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","sleep.theclinics.com","theclinics.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Sleep Medicine Clinics"],"published-print":{"date-parts":[[2020,12]]},"DOI":"10.1016\/j.jsmc.2020.08.011","type":"journal-article","created":{"date-parts":[[2020,10,5]],"date-time":"2020-10-05T09:47:19Z","timestamp":1601891239000},"page":"485-495","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":28,"title":["Lifetime Care of Duchenne Muscular Dystrophy"],"prefix":"10.1016","volume":"15","author":[{"given":"Erin W.","family":"MacKintosh","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maida L.","family":"Chen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua O.","family":"Benditt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.jsmc.2020.08.011_bib1","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1186\/s13023-017-0631-3","article-title":"The burden, epidemiology, costs and treatment for Duchenne muscular dystrophy: an evidence review","volume":"12","author":"Ryder","year":"2017","journal-title":"Orphanet J Rare Dis"},{"key":"10.1016\/j.jsmc.2020.08.011_bib2","doi-asserted-by":"crossref","first-page":"373","DOI":"10.1038\/s41582-019-0203-3","article-title":"Therapeutic developments for Duchenne muscular dystrophy","volume":"15","author":"Verhaart","year":"2019","journal-title":"Nat Rev Neurol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib3","doi-asserted-by":"crossref","first-page":"2123","DOI":"10.1212\/WNL.0000000000003217","article-title":"Efficacy and safety of deflazacort vs prednisone and placebo for Duchenne muscular dystrophy","volume":"87","author":"Griggs","year":"2016","journal-title":"Neurology"},{"key":"10.1016\/j.jsmc.2020.08.011_bib4","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1016\/j.cct.2017.04.008","article-title":"Developing standardized corticosteroid treatment for Duchenne muscular dystrophy","volume":"58","author":"Guglieri","year":"2017","journal-title":"Contemp Clin Trials"},{"key":"10.1016\/j.jsmc.2020.08.011_bib5","first-page":"1269","article-title":"Patterns of decline in upper limb function of boys and men with DMD: an international survey","volume":"261","author":"Janssen","year":"2014","journal-title":"J\u00a0Neurol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib6","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.jsmc.2020.08.011_bib7","doi-asserted-by":"crossref","first-page":"1403","DOI":"10.1183\/09031936.94.07081403","article-title":"Sleep-related respiratory disturbances in patients with Duchenne muscular dystrophy","volume":"7","author":"Barbe","year":"1994","journal-title":"Eur Respir J"},{"key":"10.1016\/j.jsmc.2020.08.011_bib8","doi-asserted-by":"crossref","first-page":"347","DOI":"10.1016\/S1474-4422(18)30025-5","article-title":"Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management","volume":"17","author":"Birnkrant","year":"2018","journal-title":"Lancet Neurol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib9","doi-asserted-by":"crossref","first-page":"739","DOI":"10.1002\/ppul.21254","article-title":"The respiratory management of patients with duchenne muscular dystrophy: a DMD care considerations working group specialty article","volume":"45","author":"Birnkrant","year":"2010","journal-title":"Pediatr Pulmonol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib10","doi-asserted-by":"crossref","first-page":"e714","DOI":"10.1542\/peds.2012-1672","article-title":"Diagnosis and management of childhood obstructive sleep apnea syndrome","volume":"130","author":"Marcus","year":"2012","journal-title":"Pediatrics"},{"key":"10.1016\/j.jsmc.2020.08.011_bib11","doi-asserted-by":"crossref","first-page":"2366","DOI":"10.1056\/NEJMoa1215881","article-title":"A\u00a0randomized trial of adenotonsillectomy for childhood sleep apnea","volume":"368","author":"Marcus","year":"2013","journal-title":"N\u00a0Engl J Med"},{"key":"10.1016\/j.jsmc.2020.08.011_bib12","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1097\/BOR.0b013e3282f51031","article-title":"The epidemiology of glucocorticoid-associated adverse events","volume":"20","author":"Mcdonough","year":"2008","journal-title":"Curr Opin Rheumatol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib13","doi-asserted-by":"crossref","first-page":"1500","DOI":"10.1016\/j.metabol.2011.06.012","article-title":"The effects of glucocorticoids on adipose tissue lipid metabolism","volume":"60","author":"Peckett","year":"2011","journal-title":"Metabolism"},{"key":"10.1016\/j.jsmc.2020.08.011_bib14","doi-asserted-by":"crossref","first-page":"357","DOI":"10.1002\/ppul.22836","article-title":"Determinants of cough efficiency in Duchenne muscular dystrophy","volume":"49","author":"Lomauro","year":"2014","journal-title":"Pediatr Pulmonol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib15","doi-asserted-by":"crossref","first-page":"2052","DOI":"10.3109\/09638288.2015.1111434","article-title":"Dysphagia in Duchenne muscular dystrophy: practical recommendations to guide management","volume":"38","author":"Toussaint","year":"2016","journal-title":"Disabil Rehabil"},{"key":"10.1016\/j.jsmc.2020.08.011_bib16","first-page":"185","article-title":"Duchenne muscular dystrophy: the management of scoliosis","volume":"2","author":"Archer","year":"2016","journal-title":"J\u00a0Spine Surg"},{"key":"10.1016\/j.jsmc.2020.08.011_bib17","doi-asserted-by":"crossref","first-page":"1024","DOI":"10.1378\/chest.112.4.1024","article-title":"Prevention of pulmonary morbidity for patients with Duchenne muscular dystrophy","volume":"112","author":"Bach","year":"1997","journal-title":"Chest"},{"key":"10.1016\/j.jsmc.2020.08.011_bib18","doi-asserted-by":"crossref","first-page":"744","DOI":"10.4187\/respcare.00831","article-title":"Duchenne muscular dystrophy: continuous noninvasive ventilatory support prolongs survival","volume":"56","author":"Bach","year":"2011","journal-title":"Respir Care"},{"key":"10.1016\/j.jsmc.2020.08.011_bib20","doi-asserted-by":"crossref","first-page":"288","DOI":"10.1115\/1.3168381","article-title":"The mechanism of mucus clearance in cough","volume":"111","author":"Basser","year":"1989","journal-title":"J\u00a0Biomech Eng"},{"key":"10.1016\/j.jsmc.2020.08.011_bib21","doi-asserted-by":"crossref","first-page":"461","DOI":"10.1097\/PHM.0b013e318174e4c7","article-title":"Cough peak flows: standard values for children and adolescents","volume":"87","author":"Bianchi","year":"2008","journal-title":"Am J Phys Med Rehabil"},{"key":"10.1016\/j.jsmc.2020.08.011_bib22","doi-asserted-by":"crossref","first-page":"1390","DOI":"10.1378\/chest.118.5.1390","article-title":"Prevention of pulmonary morbidity for patients with neuromuscular disease","volume":"118","author":"Tzeng","year":"2000","journal-title":"Chest"},{"key":"10.1016\/j.jsmc.2020.08.011_bib23","doi-asserted-by":"crossref","first-page":"173","DOI":"10.5664\/jcsm.27134","article-title":"Disturbed sleep in a patient with Duchenne muscular dystrophy","volume":"4","author":"Wagner","year":"2008","journal-title":"J\u00a0Clin Sleep Med"},{"key":"10.1016\/j.jsmc.2020.08.011_bib24","doi-asserted-by":"crossref","first-page":"1301","DOI":"10.1542\/peds.110.S3.1301","article-title":"Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care","volume":"110","author":"Blum","year":"2002","journal-title":"Pediatrics"},{"key":"10.1016\/j.jsmc.2020.08.011_bib25","doi-asserted-by":"crossref","first-page":"2477","DOI":"10.2337\/dc11-1723","volume":"34","author":"Peters","year":"2011","journal-title":"Diabetes Care"},{"key":"10.1016\/j.jsmc.2020.08.011_bib26","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1016\/S1474-4422(18)30026-7","article-title":"Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan","volume":"17","author":"Birnkrant","year":"2018","journal-title":"Lancet Neurol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib27","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1513\/AnnalsATS.201507-475BC","article-title":"Long-term effects of lung volume recruitment on maximal inspiratory capacity and vital capacity in Duchenne muscular dystrophy","volume":"13","author":"Katz","year":"2016","journal-title":"Ann Am Thorac Soc"},{"key":"10.1016\/j.jsmc.2020.08.011_bib28","doi-asserted-by":"crossref","first-page":"1117","DOI":"10.1016\/j.apmr.2012.02.024","article-title":"Lung volume recruitment slows pulmonary function decline in Duchenne muscular dystrophy","volume":"93","author":"Mckim","year":"2012","journal-title":"Arch Phys Med Rehabil"},{"key":"10.1016\/j.jsmc.2020.08.011_bib29","doi-asserted-by":"crossref","DOI":"10.1183\/23120541.00135-2016","article-title":"Lung volume recruitment acutely increases respiratory system compliance in individuals with severe respiratory muscle weakness","volume":"3","author":"Molgat-Seon","year":"2017","journal-title":"ERJ Open Res"},{"key":"10.1016\/j.jsmc.2020.08.011_bib30","doi-asserted-by":"crossref","first-page":"677","DOI":"10.1016\/j.pmrj.2015.04.001","article-title":"Feasibility of lung volume recruitment in early neuromuscular weakness: a comparison between amyotrophic lateral sclerosis, myotonic dystrophy, and postpolio syndrome","volume":"7","author":"Kaminska","year":"2015","journal-title":"PM R"},{"key":"10.1016\/j.jsmc.2020.08.011_bib31","doi-asserted-by":"crossref","first-page":"233","DOI":"10.3349\/ymj.2005.46.2.233","article-title":"Assisted cough and pulmonary compliance in patients with Duchenne muscular dystrophy","volume":"46","author":"Kang","year":"2005","journal-title":"Yonsei Med J"},{"key":"10.1016\/j.jsmc.2020.08.011_bib32","doi-asserted-by":"crossref","first-page":"1400","DOI":"10.1378\/chest.125.4.1400","article-title":"Efficacy of mechanical insufflation-exsufflation in medically stable patients with amyotrophic lateral sclerosis","volume":"125","author":"Sancho","year":"2004","journal-title":"Chest"},{"key":"10.1016\/j.jsmc.2020.08.011_bib33","doi-asserted-by":"crossref","first-page":"439","DOI":"10.3109\/17482968.2011.584881","article-title":"Erythropoietin and amyotrophic lateral sclerosis: plasma level determination","volume":"12","author":"Carilho","year":"2011","journal-title":"Amyotroph Lateral Scler"},{"key":"10.1016\/j.jsmc.2020.08.011_bib34","doi-asserted-by":"crossref","first-page":"59","DOI":"10.1002\/ppul.22548","article-title":"Respiratory management strategies for Duchenne muscular dystrophy: practice variation amongst Canadian sub-specialists","volume":"48","author":"Katz","year":"2013","journal-title":"Pediatr Pulmonol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib35","first-page":"629","article-title":"Adult care for Duchenne muscular dystrophy in the UK","volume":"262","author":"Rodger","year":"2015","journal-title":"J\u00a0Neurol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib36","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1097\/PHM.0b013e31826edcf1","article-title":"Changing trends in the management of end-stage neuromuscular respiratory muscle failure: recommendations of an international consensus","volume":"92","author":"Bach","year":"2013","journal-title":"Am J Phys Med Rehabil"},{"key":"10.1016\/j.jsmc.2020.08.011_bib37","doi-asserted-by":"crossref","first-page":"32","DOI":"10.1007\/s00455-019-09997-6","article-title":"Swallowing with noninvasive positive-pressure ventilation (NPPV) in individuals with muscular dystrophy: a qualitative analysis","volume":"35","author":"Britton","year":"2020","journal-title":"Dysphagia"},{"key":"10.1016\/j.jsmc.2020.08.011_bib38","doi-asserted-by":"crossref","first-page":"784","DOI":"10.1044\/2019_AJSLP-MSC18-18-0101","article-title":"Experiences of speaking with noninvasive positive pressure ventilation: a qualitative investigation","volume":"28","author":"Britton","year":"2019","journal-title":"Am J Speech Lang Pathol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib39","doi-asserted-by":"crossref","first-page":"804","DOI":"10.1016\/S0960-8966(03)00162-7","article-title":"The Duchenne muscular dystrophy population in Denmark, 1977-2001: prevalence, incidence and survival in relation to the introduction of ventilator use","volume":"13","author":"Jeppesen","year":"2003","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.jsmc.2020.08.011_bib40","doi-asserted-by":"crossref","first-page":"1265","DOI":"10.1111\/apa.12025","article-title":"Sleep disorders in boys with Duchenne muscular dystrophy","volume":"101","author":"Bloetzer","year":"2012","journal-title":"Acta Paediatr"},{"key":"10.1016\/j.jsmc.2020.08.011_bib41","doi-asserted-by":"crossref","first-page":"213","DOI":"10.1080\/10253890701292119","article-title":"Glucocorticoid action networks and complex psychiatric and\/or somatic disorders","volume":"10","author":"Chrousos","year":"2007","journal-title":"Stress"},{"key":"10.1016\/j.jsmc.2020.08.011_bib42","doi-asserted-by":"crossref","first-page":"546","DOI":"10.1111\/j.1469-8749.2008.03005.x","article-title":"Pain and activity limitations in children with Duchenne or Becker muscular dystrophy","volume":"50","author":"Zebracki","year":"2008","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib43","doi-asserted-by":"crossref","first-page":"257","DOI":"10.3389\/fphys.2013.00257","article-title":"Autonomic regulation in muscular dystrophy","volume":"4","author":"Angelini","year":"2013","journal-title":"Front Physiol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib44","doi-asserted-by":"crossref","first-page":"61","DOI":"10.3389\/fphys.2014.00061","article-title":"Autonomic regulation in muscular dystrophy","volume":"5","author":"Sabharwal","year":"2014","journal-title":"Front Physiol"},{"key":"10.1016\/j.jsmc.2020.08.011_bib45","doi-asserted-by":"crossref","first-page":"178","DOI":"10.1016\/j.slsci.2014.09.010","article-title":"Restless leg syndrome exacerbated by amytriptiline in a patient with Duchenne Muscular Dystrophy","volume":"7","author":"Akamine","year":"2014","journal-title":"Sleep Sci"},{"key":"10.1016\/j.jsmc.2020.08.011_bib46","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1016\/j.smrv.2017.06.002","article-title":"The influence of antidepressants on restless legs syndrome and periodic limb movements: a systematic review","volume":"38","author":"Kolla","year":"2018","journal-title":"Sleep Med Rev"},{"key":"10.1016\/j.jsmc.2020.08.011_bib47","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1177\/082585971202800104","article-title":"End-of-life discussions and advance care planning for children on long-term assisted ventilation with life-limiting conditions","volume":"28","author":"Edwards","year":"2012","journal-title":"J\u00a0Palliat Care"},{"key":"10.1016\/j.jsmc.2020.08.011_bib48","doi-asserted-by":"crossref","first-page":"903","DOI":"10.1016\/j.pmr.2012.08.002","article-title":"Using palliative care in progressive neuromuscular disease to maximize quality of life","volume":"23","author":"Carter","year":"2012","journal-title":"Phys Med Rehabil Clin N Am"},{"key":"10.1016\/j.jsmc.2020.08.011_bib49","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1097\/SPC.0000000000000172","article-title":"What does end stage in neuromuscular diseases mean? Key approach-based transitions","volume":"9","author":"Tripodoro","year":"2015","journal-title":"Curr Opin Support Palliat Care"},{"key":"10.1016\/j.jsmc.2020.08.011_bib50","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1016\/j.nmd.2016.09.022","article-title":"Men with Duchenne muscular dystrophy and end of life planning","volume":"27","author":"Abbott","year":"2017","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.jsmc.2020.08.011_bib51","doi-asserted-by":"crossref","first-page":"932","DOI":"10.1097\/01.CCM.0000256725.73993.74","article-title":"Noninvasive positive pressure ventilation in critical and palliative care settings: understanding the goals of therapy","volume":"35","author":"Curtis","year":"2007","journal-title":"Crit Care Med"}],"container-title":["Sleep Medicine Clinics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1556407X20300771?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1556407X20300771?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,27]],"date-time":"2025-10-27T10:58:55Z","timestamp":1761562735000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1556407X20300771"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,12]]},"references-count":50,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2020,12]]}},"alternative-id":["S1556407X20300771"],"URL":"https:\/\/doi.org\/10.1016\/j.jsmc.2020.08.011","relation":{},"ISSN":["1556-407X"],"issn-type":[{"value":"1556-407X","type":"print"}],"subject":[],"published":{"date-parts":[[2020,12]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Lifetime Care of Duchenne Muscular Dystrophy","name":"articletitle","label":"Article Title"},{"value":"Sleep Medicine Clinics","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jsmc.2020.08.011","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2020 Elsevier Inc. All rights reserved.","name":"copyright","label":"Copyright"}]}}