{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T08:57:05Z","timestamp":1764320225019,"version":"3.46.0"},"reference-count":24,"publisher":"EDP Sciences","license":[{"start":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T00:00:00Z","timestamp":1764288000000},"content-version":"vor","delay-in-days":27,"URL":"https:\/\/www.edpsciences.org\/en\/authors\/copyright-and-licensing"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Med Sci (Paris)"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:p>Durant ces vingt derni\u00e8res ann\u00e9es, l\u2019arriv\u00e9e des bioth\u00e9rapies et les progr\u00e8s m\u00e9dicaux ont chang\u00e9 l\u2019histoire naturelle des maladies neuromusculaires et permis d\u2019am\u00e9liorer l\u2019esp\u00e9rance et la qualit\u00e9 de vie des patients. Il est apparu n\u00e9cessaire de proposer de nouvelles strat\u00e9gies dans la prise en charge r\u00e9\u00e9ducative de l\u2019appareil locomoteur. \u00c0 cette fin, la direction des actions m\u00e9dicales de l\u2019AFM-T\u00e9l\u00e9thon, sous l\u2019\u00e9gide de la Haute autorit\u00e9 de sant\u00e9 (HAS), a initi\u00e9 et organis\u00e9 un groupe de travail d\u2019experts, pour \u00e9crire et valider de nouvelles recommandations lors de la mise en place de bioth\u00e9rapies, d\u2019instrumentation rachidienne ou de r\u00e9entrainement \u00e0 l\u2019effort. L\u2019impact attendu de cette actualisation valid\u00e9e d\u00e9but 2024 est d\u2019offrir une r\u00e9\u00e9ducation de l\u2019appareil locomoteur adapt\u00e9e des malades neuro-musculaires, plus efficace, permettant un moindre recours \u00e0 l\u2019hospitalisation, une harmonisation des pratiques, une plus large diffusion des nouvelles capacit\u00e9s offertes aux patients, une am\u00e9lioration de la qualit\u00e9 et de la dur\u00e9e de vie des patients, une r\u00e9duction des actes inad\u00e9quats, et une optimisation des prescriptions m\u00e9dicales int\u00e9grant les nouvelles donn\u00e9es (th\u00e9rapie par l\u2019exercice, meilleures strat\u00e9gies r\u00e9\u00e9ducatives, nouveaux mat\u00e9riels, nouvelles aides techniques).<\/jats:p>","DOI":"10.1051\/medsci\/2025181","type":"journal-article","created":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T08:52:58Z","timestamp":1764319978000},"page":"28-31","source":"Crossref","is-referenced-by-count":0,"special_numbering":"Hors s\u00e9rie n\u00b0 2","title":["Que retenir des nouvelles recommandations HAS AFM-T\u00e9l\u00e9thon pour la pratique clinique dans la r\u00e9\u00e9ducation de l\u2019appareil locomoteur dans les pathologies neuromusculaires ?"],"prefix":"10.1051","volume":"41","author":[{"given":"Christian","family":"Devaux","sequence":"first","affiliation":[{"name":"Kin\u00e9sith\u00e9rapeute conseil, Direction des actions m\u00e9dicales, AFM-T\u00e9l\u00e9thon"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"250","published-online":{"date-parts":[[2025,11,28]]},"reference":[{"key":"R1","unstructured":"Agence nationale d\u2019accr\u00e9ditation et d\u2019\u00e9valuation en sant\u00e9, Association fran\u00e7aise contre les myopathies. Modalit\u00e9s, indications, limites de la r\u00e9\u00e9ducation dans les pathologies neuromusculaires non acquises (\u00e0 l\u2019exclusion du drainage bronchique et de la ventilation m\u00e9canique). Conf\u00e9rence de consensus, mercredi 26 et jeudi 27 septembre 2001, Centre de Conf\u00e9rences \u2013 G\u00e9nocentre \u2013 \u00c9vry. Paris : ANAES 2001."},{"issue":"4","key":"R2","doi-asserted-by":"crossref","first-page":"347","DOI":"10.1016\/S1474-4422(18)30025-5","volume":"17","author":"Birnkrant","year":"2018","journal-title":"Lancet Neurol."},{"issue":"2","key":"R3","doi-asserted-by":"crossref","first-page":"103","DOI":"10.1016\/j.nmd.2017.11.005","volume":"28","author":"Mercuri","year":"2018","journal-title":"Neuromuscul Disord."},{"issue":"3","key":"R4","doi-asserted-by":"crossref","first-page":"363","DOI":"10.1177\/0883073812436605","volume":"27","author":"Wang","year":"2012","journal-title":"J Child Neurol."},{"issue":"12","key":"R5","doi-asserted-by":"crossref","first-page":"1559","DOI":"10.1177\/0883073810381924","volume":"25","author":"Wang","year":"2010","journal-title":"J Child Neurol."},{"key":"R6","unstructured":"R\u00e9\u00e9ducation de l\u2019appareil locomoteur dans les pathologies neuromusculaires \u00e0 la suite de l\u2019introduction de nouvelles technologies (bioth\u00e9rapie, Instrumentation rachidienne, r\u00e9entra\u00eenement \u00e0 l\u2019effort) \u2013 Argumentaire. HAS AFM-T\u00e9l\u00e9thon 2024."},{"key":"R7","unstructured":"National Institute for Health and Care Excellence. Motor neurone disease: assessment and management. NICE guideline 2016."},{"issue":"6","key":"R8","doi-asserted-by":"crossref","first-page":"590","DOI":"10.1097\/PHM.0000000000001869","volume":"101","author":"Wu","year":"2022","journal-title":"Am J Phys Med Rehabil."},{"issue":"11","key":"R9","doi-asserted-by":"crossref","first-page":"2218","DOI":"10.1016\/j.apmr.2013.04.001","volume":"94","author":"de Lattre","year":"2013","journal-title":"Arch Phys Med Rehabil."},{"issue":"6","key":"R10","doi-asserted-by":"crossref","first-page":"1085","DOI":"10.1002\/mus.25598","volume":"56","author":"Dany","year":"2017","journal-title":"Muscle Nerve"},{"key":"R11","unstructured":"Organisation mondiale de la sant\u00e9. CIF. Classification internationale du fonctionnement, du handicap et de la sant\u00e9. Gen\u00e8ve : OMS 2001."},{"key":"R12","unstructured":"Organisation mondiale de la sant\u00e9. CIF-EA. Classification internationale du fonctionnement, du handicap et de la sant\u00e9. Version pour enfants et adolescents. Gen\u00e8ve : OMS 2012."},{"issue":"2","key":"R13","first-page":"72","volume":"40","author":"Lombardo","year":"2021","journal-title":"Acta Myol."},{"issue":"6","key":"R14","doi-asserted-by":"crossref","first-page":"1036","DOI":"10.23736\/S1973-9087.21.07121-5","volume":"57","author":"Lazovic","year":"2021","journal-title":"Eur J Phys Rehabil Med."},{"issue":"7","key":"R15","doi-asserted-by":"crossref","first-page":"481","DOI":"10.1590\/0004-282x20180062","volume":"76","author":"Araujo","year":"2018","journal-title":"Arq Neuropsiquiatr."},{"issue":"2","key":"R16","doi-asserted-by":"crossref","first-page":"166","DOI":"10.1590\/0004-282X20150194","volume":"74","author":"Llerena Junior","year":"2016","journal-title":"Arq Neuro psiquiatr."},{"issue":"3","key":"R17","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1016\/S1474-4422(18)30024-3","volume":"17","author":"Birnkrant","year":"2018","journal-title":"Lancet Neurol."},{"key":"R18","doi-asserted-by":"crossref","unstructured":"Jones K, Hawke F, Newman J, et al. Interventions for promoting physical activity in people with neuromuscular disease. Cochrane Database of Systematic Reviews 2021 ; Issue 5 : CD013544.","DOI":"10.1002\/14651858.CD013544.pub2"},{"key":"R19","doi-asserted-by":"crossref","first-page":"S109","DOI":"10.1016\/j.otsr.2014.06.032","volume":"101","author":"Cunin","year":"2015","journal-title":"Orthop Traumatol Surg Res."},{"issue":"3","key":"R20","doi-asserted-by":"crossref","first-page":"260","DOI":"10.1097\/BPO.0000000000000073","volume":"34","author":"Skaggs","year":"2014","journal-title":"J Pediatr Orthop"},{"issue":"12","key":"R21","doi-asserted-by":"crossref","first-page":"910","DOI":"10.1016\/j.neurol.2011.11.008","volume":"168","author":"Attarian","year":"2012","journal-title":"Rev Neurol."},{"key":"R22","doi-asserted-by":"crossref","unstructured":"Cheuk DK, Wong V, Wraige E, Baxter P, et al. Surgery for scoliosis in Duchenne muscular dystrophy. Cochrane Database of Systematic Reviews 2015 ; Issue 10 : CD005375.","DOI":"10.1002\/14651858.CD005375.pub4"},{"key":"R23","unstructured":"Kemoun G, P\u00e9lissier J. R\u00e9entrainement \u00e0 l\u2019effort. Paris : \u00c9ditions Frison-Roche 1999."},{"key":"R24","unstructured":"R\u00e9\u00e9ducation de l\u2019appareil locomoteur dans les pathologies neuromusculaires \u00e0 la suite de l\u2019introduction de nouvelles technologies (bioth\u00e9rapie, Instrumentation rachidienne, r\u00e9entra\u00eenement \u00e0 l\u2019effort) \u2013 Recommandation. HAS AFM-T\u00e9l\u00e9thon 2024 https:\/\/www.has-sante.fr\/upload\/docs\/application\/pdf\/2024-02\/_reco408_recommandation_neuromusculaire_cd_20240118_vulg_sl.pdf"}],"container-title":["m\u00e9decine\/sciences"],"original-title":[],"link":[{"URL":"https:\/\/www.medecinesciences.org\/10.1051\/medsci\/2025181\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T08:53:16Z","timestamp":1764319996000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.medecinesciences.org\/10.1051\/medsci\/2025181"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11]]},"references-count":24,"alternative-id":["medsci250181s"],"URL":"https:\/\/doi.org\/10.1051\/medsci\/2025181","relation":{},"ISSN":["0767-0974","1958-5381"],"issn-type":[{"value":"0767-0974","type":"print"},{"value":"1958-5381","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11]]}}}