{"id":36394,"date":"2023-08-29T12:34:18","date_gmt":"2023-08-29T10:34:18","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=36394"},"modified":"2024-05-21T09:40:26","modified_gmt":"2024-05-21T07:40:26","slug":"terre-inconnue-cartographier-lexperience-dun-patient-atteint-de-dystonie-cervicale","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/neuroscience-fr\/terre-inconnue-cartographier-lexperience-dun-patient-atteint-de-dystonie-cervicale\/","title":{"rendered":"Terre inconnue : cartographier l&#8217;exp\u00e9rience d&#8217;un patient atteint de dystonie cervicale"},"content":{"rendered":"\n<p>Nous avons collabor\u00e9 avec Dystonia Europe pour contribuer \u00e0 identifier les besoins non satisfaits des personnes atteintes de dystonie cervicale, un trouble neurologique rare du mouvement et sous-diagnostiqu\u00e9, qui affecte principalement les muscles du cou. La t\u00eate est alors inclin\u00e9e sur un c\u00f4t\u00e9 ou pench\u00e9e en avant ou en arri\u00e8re.<\/p>\n\n\n\n<p>Le projet consistait \u00e0 co-cr\u00e9er la toute premi\u00e8re carte retra\u00e7ant l&#8217;exp\u00e9rience d&#8217;un patient atteint de dystonie cervicale, qui a \u00e9t\u00e9 publi\u00e9e dans <a href=\"https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-022-02270-4\">Orphanet Journal of Rare Disease<\/a>. Cette carte illustre le v\u00e9cu de 15 personnes atteintes de dystonie cervicale au Royaume-Uni, en France et en Italie, du diagnostic initial \u00e0 l&#8217;exp\u00e9rience quotidienne de ce trouble.<\/p>\n\n\n\n<p>Les informations obtenues gr\u00e2ce \u00e0 la carte ont permis \u00e0 Dystonia Europe de comprendre tous les aspects de l&#8217;exp\u00e9rience et du parcours clinique des patients, en les aidant \u00e0 identifier les besoins non satisfaits et leurs attentes pour proposer des services et des programmes de soutien personnalis\u00e9s. L&#8217;une des principales conclusions tir\u00e9es du projet a \u00e9t\u00e9 la n\u00e9cessit\u00e9 d&#8217;am\u00e9liorer la communication entre les patients et les professionnels de sant\u00e9 pour s&#8217;assurer que leurs besoins m\u00e9dicaux et \u00e9motionnels sont pris en compte.<\/p>\n\n\n\n<p>La carte est continuellement enrichie de retours d&#8217;exp\u00e9rience de patients et d&#8217;aidants, de membres de Dystonia Europe et de repr\u00e9sentants d&#8217;associations nationales de patients en Su\u00e8de, en Allemagne, en Norv\u00e8ge, en Roumanie, en Finlande, en Irlande, en Pologne et en Suisse.<\/p>\n\n\n\n<p>Monika Benson, Directrice ex\u00e9cutive de Dystonia Europe<em>, a d\u00e9clar\u00e9 : \u00ab La conception de la toute premi\u00e8re carte retra\u00e7ant le parcours du patient atteint de dystonie cervicale a mis en \u00e9vidence d&#8217;importantes lacunes dans la prestation de services d&#8217;accompagnement, v\u00e9cues par les patients eux-m\u00eames, ainsi que de nombreuses occasions manqu\u00e9es d&#8217;apporter aux patients une prise en charge multidisciplinaire. Dans tous les pays participants, nous avons constat\u00e9 un manque de clart\u00e9 dans le parcours clinique, en particulier lorsqu&#8217;il s&#8217;agit d&#8217;orienter les patients vers des physioth\u00e9rapeutes et des psychologues&nbsp;; il est urgent de corriger cette lacune majeure.&nbsp;\u00bb<\/em><\/p>\n\n\n\n<p>Ipsen et Dystonia Europe, aux c\u00f4t\u00e9s d&#8217;autres parties prenantes, continuent d&#8217;apporter des am\u00e9liorations et d&#8217;aider les patients \u00e0 s&#8217;approprier v\u00e9ritablement leur parcours de soin avec leur \u00e9quipe soignante dans les domaines identifi\u00e9s par ce projet.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Nous avons collabor\u00e9 avec Dystonia Europe pour contribuer \u00e0 identifier les besoins non satisfaits des personnes atteintes de dystonie cervicale,<\/p>\n","protected":false},"author":11,"featured_media":36391,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1193],"tags":[],"class_list":["post-36394","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-neuroscience-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Cartographier l&#039;exp\u00e9rience d&#039;un patient atteint de dystonie cervicale | Ipsen Neurosciences<\/title>\n<meta name=\"description\" content=\"Ipsen Neurosciences explore des terres inconnues en cartographiant l\u2019exp\u00e9rience d\u2019un patient atteint de dystonie cervicale. 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