{"id":11646,"date":"2025-11-12T23:17:55","date_gmt":"2025-11-12T22:17:55","guid":{"rendered":"https:\/\/rvh-synergie.org\/actualites\/une-nouvelle-etude-revele-des-impacts-a-long-terme-sur-les-survivants-du-syndrome-de-stevens-johnson\/"},"modified":"2025-11-12T23:17:55","modified_gmt":"2025-11-12T22:17:55","slug":"une-nouvelle-etude-revele-des-impacts-a-long-terme-sur-les-survivants-du-syndrome-de-stevens-johnson","status":"publish","type":"post","link":"https:\/\/rvh-synergie.org\/actualites\/une-nouvelle-etude-revele-des-impacts-a-long-terme-sur-les-survivants-du-syndrome-de-stevens-johnson\/","title":{"rendered":"Une nouvelle \u00e9tude r\u00e9v\u00e8le des impacts \u00e0 long terme sur les survivants du syndrome de Stevens-Johnson"},"content":{"rendered":"<div>\n<div class=\"article-gallery lightGallery\">\n<div data-thumb=\"https:\/\/scx1.b-cdn.net\/csz\/news\/tmb\/2020\/6-patient.jpg\" data-src=\"https:\/\/scx2.b-cdn.net\/gfx\/news\/hires\/2020\/6-patient.jpg\" data-sub-html=\"Credit: CC0 Public Domain\">\n<figure class=\"article-img\">\n<\/figure><\/div>\n<\/div>\n<p>Selon une \u00e9tude publi\u00e9e aujourd&rsquo;hui dans <i>JAMA Dermatologie<\/i>.<\/p>\n<p>Les enqu\u00eateurs du Centre m\u00e9dical de l&rsquo;Universit\u00e9 Vanderbilt pour la s\u00e9curit\u00e9 des m\u00e9dicaments et l&rsquo;immunologie (CDSI), en collaboration avec le VUMC Qualitative Research Core, ont men\u00e9 l&rsquo;une des plus grandes \u00e9tudes qualitatives aux \u00c9tats-Unis explorant la r\u00e9cup\u00e9ration du SJS\/TEN et les effets r\u00e9siduels \u00e0 long terme du point de vue des patients.<\/p>\n<p>SJS et TEN surviennent lorsqu&rsquo;un m\u00e9dicament incite le syst\u00e8me immunitaire \u00e0 attaquer la peau et les muqueuses du corps. Alors que la plupart des \u00e9tudes se sont concentr\u00e9es sur la prise en charge m\u00e9dicale aigu\u00eb, ce projet a captur\u00e9 ce qui se passe apr\u00e8s la sortie en interrogeant les survivants sur l&rsquo;impact du SJS et du TEN sur leur vie et leur environnement familial.<\/p>\n<p>\u00ab\u00a0En nous associant \u00e0 des experts en recherche qualitative et en sciences du comportement, nous avons pu v\u00e9ritablement entendre les patients dans leurs propres mots\u00a0\u00bb, a d\u00e9clar\u00e9 l&rsquo;auteure principale Elizabeth Phillips, MD, directrice du CDSI, professeur de m\u00e9decine et titulaire de la chaire John A. Oates en recherche clinique au VUMC. \u00ab\u00a0Ces r\u00e9cits sont extr\u00eamement puissants et r\u00e9v\u00e8lent de mani\u00e8re tr\u00e8s poignante les cons\u00e9quences invisibles, la solitude, le traumatisme et la peur qui suivent une maladie sous-estim\u00e9e que la plupart des cliniciens ne rencontreront qu&rsquo;une seule fois dans leur carri\u00e8re\u00a0\u00bb, a-t-elle d\u00e9clar\u00e9.<\/p>\n<p>Les commentaires des participants ont r\u00e9v\u00e9l\u00e9 que les individus ne se sentaient pas soutenus \u00e0 leur sortie, sans conseils ni \u00e9ducation de la part des prestataires. Ils ont souffert de complications physiques, notamment de probl\u00e8mes de peau et de d\u00e9ficiences visuelles, ainsi que de cons\u00e9quences psychologiques telles que des flashbacks, de l&rsquo;anxi\u00e9t\u00e9 et de la d\u00e9pression. Les participants ont d\u00e9crit comment la gratitude initiale pour la survie a c\u00e9d\u00e9 la place \u00e0 l&rsquo;isolement, \u00e0 la m\u00e9fiance et \u00e0 l&rsquo;anxi\u00e9t\u00e9 chronique \u00e0 l&rsquo;\u00e9gard des m\u00e9dicaments.<\/p>\n<p>\u00ab\u00a0Ces r\u00e9sultats indiquent un besoin \u00e9vident de soins coordonn\u00e9s\u00a0\u00bb, a d\u00e9clar\u00e9 l&rsquo;auteur principal Michelle Martin-Pozo, Ph.D., professeur adjoint de recherche en m\u00e9decine et directeur de programme du CDSI. \u00ab\u00a0La planification de la sortie devrait inclure des r\u00e9f\u00e9rences en mati\u00e8re de sant\u00e9 mentale, un suivi de la vue et une \u00e9ducation \u00e0 la fois pour les patients et leurs familles. Les survivants doivent savoir \u00e0 quoi s&rsquo;attendre et savoir qu&rsquo;ils ne sont pas seuls.\u00a0\u00bb<\/p>\n<p>Les auteurs soulignent que l&rsquo;am\u00e9lioration du soutien aux survivants n\u00e9cessitera une meilleure formation des m\u00e9decins, un suivi multidisciplinaire et l&rsquo;int\u00e9gration des voix des patients \u00e0 chaque \u00e9tape de la conception des soins.<\/p>\n<p>                                        <!-- print only --><\/p><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Selon une \u00e9tude publi\u00e9e aujourd&rsquo;hui dans JAMA Dermatologie. Les enqu\u00eateurs du Centre m\u00e9dical de l&rsquo;Universit\u00e9<\/p>\n","protected":false},"author":1,"featured_media":7894,"comment_status":"closed","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[86],"tags":[16,48,575,49,619,244,157,7648,112,1568,283,1637,47],"class_list":["post-11646","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-les-maladies","tag-des","tag-etude","tag-impacts","tag-les","tag-long","tag-nouvelle","tag-revele","tag-stevensjohnson","tag-sur","tag-survivants","tag-syndrome","tag-terme","tag-une","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-50","resize-featured-image"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Une nouvelle \u00e9tude r\u00e9v\u00e8le des impacts \u00e0 long terme sur les survivants du syndrome de Stevens-Johnson - RVH-Synergie.org<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/rvh-synergie.org\/actualites\/une-nouvelle-etude-revele-des-impacts-a-long-terme-sur-les-survivants-du-syndrome-de-stevens-johnson\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Une nouvelle \u00e9tude r\u00e9v\u00e8le des impacts \u00e0 long terme sur les survivants du syndrome de Stevens-Johnson - RVH-Synergie.org\" \/>\n<meta property=\"og:description\" content=\"Selon une \u00e9tude publi\u00e9e aujourd&rsquo;hui dans JAMA Dermatologie. 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