{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,28]],"date-time":"2025-10-28T10:42:37Z","timestamp":1761648157117},"reference-count":26,"publisher":"Elsevier BV","issue":"4","license":[{"start":{"date-parts":[[2014,4,1]],"date-time":"2014-04-01T00:00:00Z","timestamp":1396310400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"}],"content-domain":{"domain":["clinicalkey.fr","em-consulte.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Archives de P\u00e9diatrie"],"published-print":{"date-parts":[[2014,4]]},"DOI":"10.1016\/j.arcped.2014.01.017","type":"journal-article","created":{"date-parts":[[2014,3,15]],"date-time":"2014-03-15T17:30:49Z","timestamp":1394904649000},"page":"347-354","update-policy":"http:\/\/dx.doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":9,"title":["Amyotrophie spinale type 1\u00a0: enqu\u00eate multicentrique des pratiques de soins et d\u2019accompagnement palliatif sur deux p\u00e9riodes successives de 10ans"],"prefix":"10.1016","volume":"21","author":[{"given":"C.","family":"Barn\u00e9rias","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Quijano","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M.","family":"Mayer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"B.","family":"Estournet","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J.-M.","family":"Cuisset","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Sukno","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Peudenier","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C.","family":"Laroche","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Chabrier","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"P.","family":"Sabouraud","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C.","family":"Vuillerot","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"B.","family":"Chabrol","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C.","family":"Halbert","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C.","family":"Canc\u00e8s","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"P.","family":"Beze-Beyrie","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A.","family":"Ledivenah","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M.-L.","family":"Viallard","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"I.","family":"Desguerre","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"key":"10.1016\/j.arcped.2014.01.017_bib0005","first-page":"3","article-title":"Apports possibles d\u2019une \u00e9quipe mobile d\u2019accompagnement et de soins palliatifs dans les situations de limitation et d\u2019arr\u00eat de traitement actif","volume":"8","author":"Viallard","year":"2009","journal-title":"Med Palliat"},{"key":"10.1016\/j.arcped.2014.01.017_bib0010","doi-asserted-by":"crossref","first-page":"1027","DOI":"10.1177\/0883073807305788","article-title":"Participants of the International Conference on SMA Standard of Care Consensus statement for standard of care in spinal muscular atrophy","volume":"22","author":"Wang","year":"2007","journal-title":"J Child Neurol"},{"key":"10.1016\/j.arcped.2014.01.017_bib0015","doi-asserted-by":"crossref","first-page":"168","DOI":"10.1111\/j.1399-0004.2009.01200.x","article-title":"Genotype\u2013phenotype studies in infantile spinal muscular atrophy (SMA) type I in Germany\u00a0: implications for clinical trials and genetic counselling","volume":"76","author":"Rudnik-Sch\u00f6neborn","year":"2009","journal-title":"Clin Genet"},{"key":"10.1016\/j.arcped.2014.01.017_bib0020","doi-asserted-by":"crossref","first-page":"518","DOI":"10.1001\/archneur.1995.00540290108025","article-title":"Natural history in proximal spinal muscular atrophy. Clinical analysis of 445\u00a0patients and suggestions for a modification of existing classifications","volume":"52","author":"Zerres","year":"1995","journal-title":"Arch Neurol"},{"key":"10.1016\/j.arcped.2014.01.017_bib0025","first-page":"1181","article-title":"Spinal muscular atrophy. A 4\u00a0years prospective, multicenter, longitudinal study (168\u00a0cases)","volume":"189","author":"Barois","year":"2005","journal-title":"Bull Acad Natl Med"},{"key":"10.1016\/j.arcped.2014.01.017_bib0030","doi-asserted-by":"crossref","first-page":"548","DOI":"10.1542\/peds.2004-0668","article-title":"Spinal muscular atrophy: survival pattern and functional status","volume":"114","author":"Chung","year":"2004","journal-title":"Pediatrics"},{"key":"10.1016\/j.arcped.2014.01.017_bib0035","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1016\/j.nmd.2008.10.010","article-title":"Survival in SMA type I: a prospective analysis of 34\u00a0consecutive cases","volume":"19","author":"Kaufmann","year":"2009","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.arcped.2014.01.017_bib0040","doi-asserted-by":"crossref","first-page":"541","DOI":"10.1016\/j.nmd.2008.05.008","article-title":"Survival in SMA type I: a prospective analysis of 34\u00a0consecutive cases","volume":"18","author":"Cobben","year":"2008","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.arcped.2014.01.017_bib0045","doi-asserted-by":"crossref","first-page":"831","DOI":"10.1378\/chest.126.3.831","article-title":"Respiratory capacity course in patients with infantile spinal muscular atrophy","volume":"126","author":"Ioos","year":"2004","journal-title":"Chest"},{"key":"10.1016\/j.arcped.2014.01.017_bib0050","first-page":"303","article-title":"Quels accompagnements \u00e0 l\u2019h\u00f4pital pour un enfant atteint d\u2019amyotrophie spinale de type 1\u00a0et sa famille\u00a0?","volume":"9","author":"Jouinot","year":"2010","journal-title":"Med Palliat"},{"key":"10.1016\/j.arcped.2014.01.017_bib0055","first-page":"291","article-title":"Les maladies neuromusculaires chez l\u2019enfant\u00a0: place et d\u00e9finition des soins palliatifs\u00a0?","volume":"9","author":"Desguerre","year":"2010","journal-title":"Med Palliat"},{"key":"10.1016\/j.arcped.2014.01.017_bib0060","doi-asserted-by":"crossref","first-page":"845","DOI":"10.1136\/adc.2009.166512","article-title":"Implementation of \u201cThe Consensus Statement for the Standard of Care in Spinal Muscular Atrophy\u201d when applied to infants with severe type 1\u00a0SMA in the UK","volume":"95","author":"Roper","year":"2010","journal-title":"Arch Dis Child"},{"key":"10.1016\/j.arcped.2014.01.017_bib0065","doi-asserted-by":"crossref","first-page":"2031","DOI":"10.1016\/j.jpedsurg.2008.05.035","article-title":"Early laparoscopic fundoplication and gastrostomy in infants with spinal muscular amyotrophy","volume":"43","author":"Durkin","year":"2008","journal-title":"J Pediatr Surg"},{"key":"10.1016\/j.arcped.2014.01.017_bib0070","doi-asserted-by":"crossref","first-page":"1100","DOI":"10.1378\/chest.117.4.1100","article-title":"Spinal muscular atrophy type 1","volume":"117","author":"Bach","year":"2000","journal-title":"Chest"},{"key":"10.1016\/j.arcped.2014.01.017_bib0075","doi-asserted-by":"crossref","first-page":"245","DOI":"10.1542\/peds.2008-2952K","article-title":"Special considerations in the respiratory management of spinal muscular atrophy","volume":"123","author":"Mary","year":"2009","journal-title":"Pediatrics"},{"key":"10.1016\/j.arcped.2014.01.017_bib0080","doi-asserted-by":"crossref","first-page":"407","DOI":"10.1016\/S0887-8994(97)00227-0","article-title":"Treatment of type I spinal muscular atrophy with noninvasive ventilation and gastrostomy feeding","volume":"18","author":"Birnkrant","year":"1998","journal-title":"Pediatr Neurol"},{"key":"10.1016\/j.arcped.2014.01.017_bib0085","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1016\/j.prrv.2006.04.200","article-title":"Spinal muscular atrophy type 1: what are the ethics and practicality of respiratory support?","volume":"7","author":"Mitchell","year":"2006","journal-title":"Paediatr Respir Rev"},{"key":"10.1016\/j.arcped.2014.01.017_bib0090","doi-asserted-by":"crossref","first-page":"209","DOI":"10.1016\/j.prrv.2005.06.003","article-title":"Ethical aspects of home long term ventilation in children with neuromuscular disease","volume":"6","author":"Simonds","year":"2005","journal-title":"Paediatr Respir Rev"},{"key":"10.1016\/j.arcped.2014.01.017_bib0095","doi-asserted-by":"crossref","first-page":"790","DOI":"10.1111\/j.1440-1754.2007.01197.x","article-title":"Physician attitudes towards ventilatory support for spinal muscular atrophy type 1\u00a0in Australasia","volume":"43","author":"Geevasinga","year":"2007","journal-title":"J Paediatr Child Health"},{"key":"10.1016\/j.arcped.2014.01.017_bib0100","doi-asserted-by":"crossref","first-page":"1463","DOI":"10.1016\/S0012-3692(15)34513-X","article-title":"There are other ways to manage spinal muscular atrophy type 1","volume":"127","author":"Bach","year":"2005","journal-title":"Chest"},{"key":"10.1016\/j.arcped.2014.01.017_bib0105","doi-asserted-by":"crossref","first-page":"709","DOI":"10.1136\/adc.2004.065961","article-title":"Respiratory management of the infant with type 1\u00a0spinal muscular atrophy","volume":"9","author":"Bush","year":"2005","journal-title":"Arch Dis Child"},{"key":"10.1016\/j.arcped.2014.01.017_bib0110","first-page":"279","article-title":"Place des soins palliatifs dans l\u2019accompagnement des maladies neuromusculaires","volume":"9","author":"Viallard","year":"2010","journal-title":"Med Palliat"},{"key":"10.1016\/j.arcped.2014.01.017_bib0115","doi-asserted-by":"crossref","first-page":"1501","DOI":"10.1016\/j.arcped.2005.04.085","article-title":"Limitations et arr\u00eats de traitement actif en r\u00e9animation p\u00e9diatrique\u00a0: recommandations du GFRUP","volume":"12","author":"Hubert","year":"2005","journal-title":"Arch P\u00e9diatr"},{"key":"10.1016\/j.arcped.2014.01.017_bib0120","first-page":"67","article-title":"\u00c9thique de la d\u00e9cision m\u00e9dicale aupr\u00e8s d\u2019enfants polyhandicap\u00e9s","volume":"30","author":"Grimont-Rolland","year":"2009","journal-title":"Mot Cereb"},{"key":"10.1016\/j.arcped.2014.01.017_bib0125","first-page":"62","article-title":"Avant la loi morale\u00a0: l\u2019\u00e9thique in symposium","author":"Ricoeur","year":"1999","journal-title":"Enc Un"},{"key":"10.1016\/j.arcped.2014.01.017_bib0130","series-title":"\u00c9thique et infini (dialogues d\u2019Emmanuel Levinas et Philippe Nemo)","author":"L\u00e9vinas","year":"1982"}],"container-title":["Archives de P\u00e9diatrie"],"original-title":[],"language":"fr","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0929693X14000384?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0929693X14000384?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2018,10,5]],"date-time":"2018-10-05T22:52:55Z","timestamp":1538779975000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0929693X14000384"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,4]]},"references-count":26,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2014,4]]}},"alternative-id":["S0929693X14000384"],"URL":"https:\/\/doi.org\/10.1016\/j.arcped.2014.01.017","relation":{},"ISSN":["0929-693X"],"issn-type":[{"value":"0929-693X","type":"print"}],"subject":[],"published":{"date-parts":[[2014,4]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Amyotrophie spinale type 1\u00a0: enqu\u00eate multicentrique des pratiques de soins et d\u2019accompagnement palliatif sur deux p\u00e9riodes successives de 10ans","name":"articletitle","label":"Article Title"},{"value":"Archives de P\u00e9diatrie","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.arcped.2014.01.017","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"Copyright \u00a9 2014 Elsevier Masson SAS. All rights reserved.","name":"copyright","label":"Copyright"}]}}