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’exp\u00e9rience quotidienne de ce trouble.<\/p>\n\n\n\nLes informations obtenues gr\u00e2ce \u00e0 la carte ont permis \u00e0 Dystonia Europe de comprendre tous les aspects de l’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’une des principales conclusions tir\u00e9es du projet a \u00e9t\u00e9 la n\u00e9cessit\u00e9 d’am\u00e9liorer la communication entre les patients et les professionnels de sant\u00e9 pour s’assurer que leurs besoins m\u00e9dicaux et \u00e9motionnels sont pris en compte.<\/p>\n\n\n\n
La carte est continuellement enrichie de retours d’exp\u00e9rience de patients et d’aidants, de membres de Dystonia Europe et de repr\u00e9sentants d’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
Monika Benson, Directrice ex\u00e9cutive de Dystonia Europe, 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’importantes lacunes dans la prestation de services d’accompagnement, v\u00e9cues par les patients eux-m\u00eames, ainsi que de nombreuses occasions manqu\u00e9es d’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’il s’agit d’orienter les patients vers des physioth\u00e9rapeutes et des psychologues ; il est urgent de corriger cette lacune majeure. \u00bb<\/em><\/p>\n\n\n\nIpsen et Dystonia Europe, aux c\u00f4t\u00e9s d’autres parties prenantes, continuent d’apporter des am\u00e9liorations et d’aider les patients \u00e0 s’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":"
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,"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":"\n
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