{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,27]],"date-time":"2026-03-27T00:58:22Z","timestamp":1774573102455,"version":"3.50.1"},"reference-count":25,"publisher":"CAIRN.INFO","issue":"1","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,3,11]]},"abstract":"<jats:p>Introduction : Les parcours de soins et de vie des patients atteints de mucoviscidose ont \u00e9t\u00e9 profond\u00e9ment modifi\u00e9s pendant la crise sanitaire en France. L\u2019exp\u00e9rience patient peut en rendre compte pour apporter des enseignements sur l\u2019adaptation \u00e0 la crise. But de l\u2019\u00e9tude : L\u2019\u00e9tude collaborative ExPaParM a permis d\u2019analyser l\u2019exp\u00e9rience d\u2019un \u00e9chantillon vari\u00e9 de patients et d\u2019identifier des changements de pratiques dans des centres de ressources et de comp\u00e9tences (CRCM), dans le but de caract\u00e9riser les adaptations et les \u00e9v\u00e9nements d\u00e9stabilisants v\u00e9cus pendant la crise, selon une approche syst\u00e9mique. R\u00e9sultats : Des pratiques d\u2019adaptation ont \u00e9t\u00e9 identifi\u00e9es pour minimiser les cons\u00e9quences de la crise ou maintenir la qualit\u00e9 des soins au plus pr\u00e8s des recommandations. Elles concernent le niveau individuel (patient et famille), les soins de proximit\u00e9, la prise en charge au CRCM et l\u2019organisation hospitali\u00e8re. Lorsque les r\u00e9percussions n\u00e9gatives de la crise ont \u00e9t\u00e9 av\u00e9r\u00e9es pour les patients, des facteurs de r\u00e9silience fond\u00e9s sur des comp\u00e9tences individuelles et familiales, la relation de confiance avec les professionnels et des r\u00e9seaux de solidarit\u00e9 informels ont g\u00e9n\u00e9ralement permis de surmonter des situations complexes. Conclusions : Des points forts pr\u00e9existants \u00e0 la crise se sont r\u00e9v\u00e9l\u00e9s d\u00e9terminants : la structuration des \u00e9quipes des CRCM, des ressources num\u00e9riques, l\u2019\u00e9ducation th\u00e9rapeutique des patients et un circuit de diffusion d\u2019informations pour la mucoviscidose. R\u00e9duire la vuln\u00e9rabilit\u00e9 \u00e0 une future crise passerait en outre par la s\u00e9curisation des m\u00e9dicaments essentiels dans la pathologie, l\u2019organisation de circuits hospitaliers prot\u00e9g\u00e9s et l\u2019existence de plans de pr\u00e9paration pour les patients.<\/jats:p>","DOI":"10.3917\/spub.251.0209","type":"journal-article","created":{"date-parts":[[2025,3,19]],"date-time":"2025-03-19T00:57:04Z","timestamp":1742345824000},"page":"209-223","source":"Crossref","is-referenced-by-count":0,"title":["Anticiper de futures crises : le\u00e7ons de l\u2019exp\u00e9rience patient mucoviscidose pendant la pand\u00e9mie de COVID-19"],"prefix":"10.3917","volume":"vol. 37","author":[{"given":"Audrey","family":"Chansard","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dominique","family":"Pougheon-Bertrand","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C\u00e9cile","family":"Frenod","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isabelle","family":"Danner-Boucher","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Asma","family":"Gabsi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sylvie","family":"Montcouquiol","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sophie","family":"Th\u00e9rouanne","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pierre","family":"Lombrail","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"2273","reference":[{"key":"rb1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000009566"},{"key":"rb2","doi-asserted-by":"publisher","DOI":"10.1177\/2374373520926360"},{"key":"rb3","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgme.2020.04.002"},{"key":"rb4","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-2600(20)30177-6"},{"key":"rb5","doi-asserted-by":"publisher","DOI":"10.1136\/thorax-2022-219086"},{"key":"rb6","unstructured":"6Registre fran\u00e7ais de la mucoviscidose. 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