{"id":7238,"date":"2026-01-16T10:29:40","date_gmt":"2026-01-16T15:29:40","guid":{"rendered":"https:\/\/pscpartners.ca\/resource\/csp-cholangiocarcinome-et-importance-de-la-communication\/"},"modified":"2026-10-07T10:33:19","modified_gmt":"2026-10-07T14:33:19","slug":"csp-cholangiocarcinome-et-importance-de-la-communication","status":"publish","type":"resource","link":"https:\/\/pscpartners.ca\/fr\/resource\/csp-cholangiocarcinome-et-importance-de-la-communication\/","title":{"rendered":"CSP, cholangiocarcinome et importance de la communication"},"content":{"rendered":"<div class=\"gb-container gb-container-b9f925cc psc-container\">\n\n<p class=\"wp-block-paragraph\">Les personnes vivant avec une cholangite scl\u00e9rosante primitive (CSP) sont confront\u00e9es \u00e0 un risque plus \u00e9lev\u00e9 de d\u00e9velopper un cholangiocarcinome (CCA), un cancer rare des voies biliaires. Le risque \u00e0 vie peut atteindre 20 %, mais les outils de d\u00e9pistage actuels sont limit\u00e9s et pas toujours fiables.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pour mieux comprendre \u00e0 quel point les patients atteints de CSP sont inform\u00e9s sur le risque de CCA et le d\u00e9pistage, PSC Partners et PSC Support ont men\u00e9 une enqu\u00eate mondiale aupr\u00e8s des patients. L&rsquo;objectif \u00e9tait d&rsquo;identifier les lacunes en mati\u00e8re d&rsquo;\u00e9ducation et de communication alors que de nouveaux outils de d\u00e9pistage sont en cours de d\u00e9veloppement.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Principales conclusions<\/h2>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Seuls 51 % des patients ont d\u00e9clar\u00e9 que leur m\u00e9decin avait discut\u00e9 de mani\u00e8re proactive du risque de CCA et de la surveillance.<\/li>\n\n\n\n<li>Les patients qui ont eu ces conversations \u00e9taient beaucoup plus susceptibles de se sentir inform\u00e9s (56 % contre 15 %).<\/li>\n\n\n\n<li>Les patients en Am\u00e9rique du Nord et ceux qui consultent un h\u00e9patologue \u00e9taient plus susceptibles d&rsquo;avoir des discussions sur le CCA que ceux en Europe ou qui consultent un gastro-ent\u00e9rologue g\u00e9n\u00e9ral.<\/li>\n\n\n\n<li>68 % des r\u00e9pondants ont indiqu\u00e9 qu\u2019ils passaient une cholangiopancr\u00e9atographie par r\u00e9sonance magn\u00e9tique (CPRM) chaque ann\u00e9e, mais plusieurs ont d\u00e9clar\u00e9 que les r\u00e9sultats n\u2019\u00e9taient pas clairement expliqu\u00e9s.<\/li>\n\n\n\n<li>Seuls 36 % des patients estimaient avoir suffisamment d\u2019informations sur le CCA en g\u00e9n\u00e9ral.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Les pr\u00e9occupations des patients<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">De nombreux patients ont signal\u00e9 une anxi\u00e9t\u00e9 et une peur importantes concernant le risque de CCA et une frustration face \u00e0 des pratiques de d\u00e9pistage peu claires ou incoh\u00e9rentes. La plupart des patients cherchent de l&rsquo;information en ligne ou aupr\u00e8s d&rsquo;organisations de patients plut\u00f4t que directement aupr\u00e8s de leur \u00e9quipe de soins.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Ce que cela signifie pour les patients atteints de cholangite scl\u00e9rosante primitive (CSP)<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">L&rsquo;enqu\u00eate met en \u00e9vidence d&rsquo;importantes lacunes dans l&rsquo;\u00e9ducation des patients et la communication concernant le CCA. Au fur et \u00e0 mesure que de nouveaux tests de d\u00e9pistage non invasifs sont mis au point, une meilleure communication entre les professionnels de la sant\u00e9 et les patients, ainsi qu\u2019une meilleure information des patients, seront essentielles pour garantir que les patients atteints de CSP re\u00e7oivent des soins clairs, coh\u00e9rents et solidaires.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cela renforce l&rsquo;importance pour les patients atteints de CSP dans le monde entier de participer au <a href=\"http:\/\/www.pscpartnersregistry.org\" data-type=\"link\" data-id=\"http:\/\/www.pscpartnersregistry.org\" target=\"_blank\" rel=\"noreferrer noopener\">registre des patients de PSC Partners<\/a> afin de s&rsquo;assurer que toutes les exp\u00e9riences sont prises en compte dans les publications.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pour obtenir plus d\u2019information sur la m\u00e9thodologie de l\u2019enqu\u00eate et ses r\u00e9sultats, consultez \u00ab<a href=\"https:\/\/www.pscpartnersregistry.org\/your-data-in-publication\/2025.-aasld-liver-meeting-abstract-and-poster%3A-4476%3A-identifying-gaps-in-psc-patient-education-and-understanding-of-cholangiocarcinoma-screening-and-surveillance-practices%3B-results-of-a-multinational-patient-survey-\" data-type=\"link\" data-id=\"https:\/\/www.pscpartnersregistry.org\/your-data-in-publication\/2025.-aasld-liver-meeting-abstract-and-poster%3A-4476%3A-identifying-gaps-in-psc-patient-education-and-understanding-of-cholangiocarcinoma-screening-and-surveillance-practices%3B-results-of-a-multinational-patient-survey-\" target=\"_blank\" rel=\"noreferrer noopener\">Identifier les lacunes dans l\u2019\u00e9ducation des patients atteints de cholangite scl\u00e9rosante primitive et leur compr\u00e9hension des pratiques de d\u00e9pistage et de surveillance du cholangiocarcinome : r\u00e9sultats d\u2019une enqu\u00eate multinationale aupr\u00e8s des patients<\/a>\u00bb. Voici le r\u00e9sum\u00e9 de l\u2019enqu\u00eate sous forme d\u2019affiche.<\/p>\n\n\n\n<div style=\"height:54px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure data-wp-context=\"{&quot;imageId&quot;:&quot;6acae6673d480&quot;}\" data-wp-interactive=\"core\/image\" data-wp-key=\"6acae6673d480\" class=\"wp-block-image size-full wp-lightbox-container\"><img loading=\"lazy\" decoding=\"async\" width=\"1920\" height=\"1017\" data-wp-class--hide=\"state.isContentHidden\" data-wp-class--show=\"state.isContentVisible\" data-wp-init=\"callbacks.setButtonStyles\" data-wp-on--click=\"actions.showLightbox\" data-wp-on--load=\"callbacks.setButtonStyles\" data-wp-on--pointerdown=\"actions.preloadImage\" data-wp-on--pointerenter=\"actions.preloadImageWithDelay\" data-wp-on--pointerleave=\"actions.cancelPreload\" data-wp-on-window--resize=\"callbacks.setButtonStyles\" src=\"https:\/\/pscpartners.ca\/wp-content\/uploads\/2026\/01\/b70ce1_53ec6c9e6e8a4d0a8185776ff5d622c3mv2.webp\" alt=\"\" class=\"wp-image-7236\" srcset=\"https:\/\/pscpartners.ca\/wp-content\/uploads\/2026\/01\/b70ce1_53ec6c9e6e8a4d0a8185776ff5d622c3mv2.webp 1920w, https:\/\/pscpartners.ca\/wp-content\/uploads\/2026\/01\/b70ce1_53ec6c9e6e8a4d0a8185776ff5d622c3mv2-300x159.webp 300w, https:\/\/pscpartners.ca\/wp-content\/uploads\/2026\/01\/b70ce1_53ec6c9e6e8a4d0a8185776ff5d622c3mv2-1024x542.webp 1024w, https:\/\/pscpartners.ca\/wp-content\/uploads\/2026\/01\/b70ce1_53ec6c9e6e8a4d0a8185776ff5d622c3mv2-768x407.webp 768w, https:\/\/pscpartners.ca\/wp-content\/uploads\/2026\/01\/b70ce1_53ec6c9e6e8a4d0a8185776ff5d622c3mv2-1536x814.webp 1536w\" sizes=\"auto, (max-width: 1920px) 100vw, 1920px\" \/><button\n\t\t\tclass=\"lightbox-trigger\"\n\t\t\ttype=\"button\"\n\t\t\taria-haspopup=\"dialog\"\n\t\t\tdata-wp-bind--aria-label=\"state.thisImage.triggerButtonAriaLabel\"\n\t\t\tdata-wp-init=\"callbacks.initTriggerButton\"\n\t\t\tdata-wp-on--click=\"actions.showLightbox\"\n\t\t\tdata-wp-style--right=\"state.thisImage.buttonRight\"\n\t\t\tdata-wp-style--top=\"state.thisImage.buttonTop\"\n\t\t>\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"12\" height=\"12\" fill=\"none\" viewBox=\"0 0 12 12\">\n\t\t\t\t<path fill=\"#fff\" d=\"M2 0a2 2 0 0 0-2 2v2h1.5V2a.5.5 0 0 1 .5-.5h2V0H2Zm2 10.5H2a.5.5 0 0 1-.5-.5V8H0v2a2 2 0 0 0 2 2h2v-1.5ZM8 12v-1.5h2a.5.5 0 0 0 .5-.5V8H12v2a2 2 0 0 1-2 2H8Zm2-12a2 2 0 0 1 2 2v2h-1.5V2a.5.5 0 0 0-.5-.5H8V0h2Z\" \/>\n\t\t\t<\/svg>\n\t\t<\/button><\/figure>\n\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Les personnes vivant avec une cholangite scl\u00e9rosante primitive (CSP) sont confront\u00e9es \u00e0 un risque plus \u00e9lev\u00e9 de d\u00e9velopper un cholangiocarcinome (CCA), un cancer rare des voies biliaires. Le risque \u00e0 vie peut atteindre 20 %, mais les outils de d\u00e9pistage actuels sont limit\u00e9s et pas toujours fiables. Pour mieux comprendre \u00e0 quel point les patients &#8230; <a title=\"CSP, cholangiocarcinome et importance de la communication\" class=\"read-more\" href=\"https:\/\/pscpartners.ca\/fr\/resource\/csp-cholangiocarcinome-et-importance-de-la-communication\/\" aria-label=\"En savoir plus sur CSP, cholangiocarcinome et importance de la communication\">Read more<\/a><\/p>\n","protected":false},"featured_media":7239,"template":"","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"Les patients atteints de cholangite scl\u00e9rosante primitive (CSP) connaissent des lacunes en mati\u00e8re de communication et de compr\u00e9hension concernant le d\u00e9pistage et la surveillance du cholangiocarcinome (CCA).","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"both","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[]},"resource-category":[17,16],"class_list":["post-7238","resource","type-resource","status-publish","has-post-thumbnail","hentry","resource-category-advancing-psc","resource-category-living-with-psc"],"acf":[],"_links":{"self":[{"href":"https:\/\/pscpartners.ca\/fr\/wp-json\/wp\/v2\/resource\/7238","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/pscpartners.ca\/fr\/wp-json\/wp\/v2\/resource"}],"about":[{"href":"https:\/\/pscpartners.ca\/fr\/wp-json\/wp\/v2\/types\/resource"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/pscpartners.ca\/fr\/wp-json\/wp\/v2\/media\/7239"}],"wp:attachment":[{"href":"https:\/\/pscpartners.ca\/fr\/wp-json\/wp\/v2\/media?parent=7238"}],"wp:term":[{"taxonomy":"resource-category","embeddable":true,"href":"https:\/\/pscpartners.ca\/fr\/wp-json\/wp\/v2\/resource-category?post=7238"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}