{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T20:30:38Z","timestamp":1789590638774,"version":"build-2803163510"},"reference-count":9,"publisher":"EDP Sciences","license":[{"start":{"date-parts":[[2024,11,18]],"date-time":"2024-11-18T00:00:00Z","timestamp":1731888000000},"content-version":"vor","delay-in-days":17,"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":[[2024,11]]},"abstract":"<jats:p>Cette \u00e9tude centr\u00e9e sur le suivi de l\u2019insuffisance respiratoire (IR) des patients atteints de maladies neuromusculaires (MNM) met l\u2019accent sur la n\u00e9cessit\u00e9 d\u2019am\u00e9liorer l\u2019offre de soins et de pallier les ruptures de parcours. L\u2019infirmier(\u00e8re) en pratique avanc\u00e9e (IPA), dans une dynamique pluridisciplinaire, pourrait ainsi \u00eatre le maillon manquant.<\/jats:p>\n<jats:p>L\u2019am\u00e9lioration de la prise en charge des MNM est au c\u0153ur des pr\u00e9occupations de la fili\u00e8re de sant\u00e9 maladies rares neuromusculaires Filnemus, des centres de r\u00e9f\u00e9rence et de l\u2019AFM-T\u00e9l\u00e9thon. C\u2019est aussi, chez eux, que se discutent les besoins d\u2019IPA sp\u00e9cialis\u00e9e dans les affections neuromusculaires et qui pourrait r\u00e9pondre \u00e0 des besoins non couverts ou insuffisamment couverts dans le parcours de sant\u00e9.<\/jats:p>","DOI":"10.1051\/medsci\/2024136","type":"journal-article","created":{"date-parts":[[2024,11,18]],"date-time":"2024-11-18T08:51:13Z","timestamp":1731919873000},"page":"9-11","source":"Crossref","is-referenced-by-count":1,"special_numbering":"Hors s\u00e9rie n\u00b0 1","title":["Place de l\u2019infirmier(\u00e8re) en pratique avanc\u00e9e (IPA) dans le suivi de l\u2019insuffisance respiratoire du patient neuromusculaire"],"prefix":"10.1051","volume":"40","author":[{"given":"Raja","family":"Kraiem","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"250","published-online":{"date-parts":[[2024,11,18]]},"reference":[{"issue":"2","key":"R1","doi-asserted-by":"crossref","first-page":"5157","DOI":"10.1016\/j.neurenf.2007.12.003","volume":"56","author":"Urtizberea","year":"2008","journal-title":"Neuropsychiatrie de l\u2019Enfance et de l\u2019Adolescence"},{"key":"R2","unstructured":"Dal\u2019Secco E. 2018-2022: quelle nouvelle strat\u00e9gie nationale de sant\u00e9? Handicap.fr. https:\/\/informations.handicap.fr\/a-strategie-nationale-sante-10438.php (consult\u00e9 le 28 novembre 2022)."},{"key":"R3","unstructured":"Anguis M, Bergeat M, Pisarik J, et al. Quelle d\u00e9mographie r\u00e9cente et \u00e0 venir pour les professions m\u00e9dicales et pharmaceutiques? Les Dossiers de la DREES 2021."},{"key":"R4","doi-asserted-by":"crossref","unstructured":"Boussaid G. Impact de la prise en charge respiratoire chez les patients atteints d\u2019une maladie neuromusculaire. Universit\u00e9 Paris Saclay (COmUE) 2016. Consult\u00e9 le 27d\u00e9cembre 2022. [En ligne]","DOI":"10.1051\/medsci\/201632s208"},{"issue":"6","key":"R5","doi-asserted-by":"crossref","first-page":"316","DOI":"10.1016\/j.pneumo.2017.10.001","volume":"73","author":"Priou","year":"2017","journal-title":"Rev Pneumol Clin"},{"key":"R6","unstructured":"Modalit\u00e9s pratiques de la ventilation non invasive en pression positive, au long cours, \u00e0 domicile, dans les maladies neuromusculaires. Haute Autorit\u00e9 de Sant\u00e9 2006. [En ligne]"},{"issue":"6","key":"R7","doi-asserted-by":"crossref","first-page":"753757","DOI":"10.1212\/WNL.56.6.753","volume":"56","author":"Lechtzin","year":"2001","journal-title":"Neurology"},{"key":"R8","unstructured":"Pr\u00e9vention et maladies neuromusculaires. Savoirs et comprendre, AFM-T\u00e9l\u00e9thon 2016. [En ligne]"},{"issue":"5","key":"R9","first-page":"51","volume":"12","author":"Chouinard","year":"2015","journal-title":"Perspective infirmi\u00e8re"}],"container-title":["m\u00e9decine\/sciences"],"original-title":[],"link":[{"URL":"https:\/\/www.medecinesciences.org\/10.1051\/medsci\/2024136\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,11,18]],"date-time":"2024-11-18T08:51:23Z","timestamp":1731919883000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.medecinesciences.org\/10.1051\/medsci\/2024136"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,11]]},"references-count":9,"alternative-id":["medsci240136s"],"URL":"https:\/\/doi.org\/10.1051\/medsci\/2024136","relation":{},"ISSN":["0767-0974","1958-5381"],"issn-type":[{"value":"0767-0974","type":"print"},{"value":"1958-5381","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,11]]}}}