{"id":45887,"date":"2023-11-28T20:38:42","date_gmt":"2023-11-28T18:38:42","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=45887"},"modified":"2023-11-30T07:47:24","modified_gmt":"2023-11-30T05:47:24","slug":"cholangite-biliaire-primitive-la-puissance-des-resultats-rapportes-par-les-patients","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/cholangite-biliaire-primitive-la-puissance-des-resultats-rapportes-par-les-patients\/","title":{"rendered":"Cholangite biliaire primitive\u202f: la puissance des r\u00e9sultats rapport\u00e9s par les patients\u00a0"},"content":{"rendered":"\n<p><em><strong>\u00ab L\u2019important dans le cas de la CBP est d\u2019adopter une vision globale et de se demander : quels sont les probl\u00e8mes que nous essayons de r\u00e9soudre ? Le premier est le risque de progression vers la cirrhose, le second concerne les sympt\u00f4mes et la qualit\u00e9 de vie\u202f\u00bb<\/strong><\/em>. \u2013 Professeur David Jones\u00a0<\/p>\n\n\n\n<p>La cholangite biliaire primitive, ou CBP, est une maladie h\u00e9patique cholestatique auto-immune rare.<sup>1<\/sup> Parmi les personnes touch\u00e9es, neuf sur dix sont des femmes, sans que l\u2019on sache vraiment pourquoi.<sup>2 <\/sup>Certaines donn\u00e9es sugg\u00e8rent qu&#8217;il pourrait y avoir une origine g\u00e9n\u00e9tique et&nbsp;&nbsp;<\/p>\n\n\n\n<p>environnementale, mais des recherches suppl\u00e9mentaires sont n\u00e9cessaires.<sup>3,4<\/sup>&nbsp;&nbsp;<\/p>\n\n\n\n<p>Malgr\u00e9 la stigmatisation \u00e0 laquelle sont souvent confront\u00e9es les personnes vivant avec la CBP, nous savons que la maladie n&#8217;est pas due \u00e0 la consommation d&#8217;alcool.<sup>5<\/sup><sup>,6<\/sup>&nbsp;<\/p>\n\n\n\n<p>Les personnes atteintes de CBP sont confront\u00e9es \u00e0 des sympt\u00f4mes d\u00e9bilitants qui ont un impact significatif sur la vie quotidienne.<sup>7<\/sup> Des sympt\u00f4mes tels que la fatigue, qui touche 95 % des patients,<sup>8<\/sup> et les d\u00e9mangeaisons, qui touchent 70 % des patients,<sup>8,9<\/sup> peuvent avoir un impact tellement n\u00e9gatif sur la qualit\u00e9 de vie d&#8217;une personne qu&#8217;ils peuvent conduire \u00e0 la d\u00e9pression, au manque de sommeil et \u00e0 des id\u00e9es suicidaires. <sup>10<\/sup>&nbsp;<\/p>\n\n\n\n<p><em><strong>\u00ab En ce qui concerne les sympt\u00f4mes, la premi\u00e8re bataille consiste \u00e0 amener les cliniciens \u00e0 poser des questions. Environ la moiti\u00e9 des patients ne sont jamais interrog\u00e9s sur leurs sympt\u00f4mes, ce qui constitue un probl\u00e8me \u00e9vident\u202f\u00bb.<\/strong><\/em> \u2013 Professeur David Jones.\u00a0\u00a0<\/p>\n\n\n\n<p>Sandra Silvestri, Chief Medical Officer d\u2019Ipsen, a eu l&#8217;occasion de s&#8217;entretenir avec, David Jones, professeur d&#8217;immunologie h\u00e9patique, \u00e0 l\u2019occasion du congr\u00e8s annuel The Liver Meeting, organis\u00e9 par l&#8217;American Association for the Study of Liver Diseases (AASLD). Le professeur Jones explique ici l\u2019importance de prendre en compte les r\u00e9sultats rapport\u00e9s par les patients en m\u00eame temps que les biomarqueurs de la sant\u00e9 h\u00e9patique pour aider \u00e0 traiter les sympt\u00f4mes qui ont un impact n\u00e9gatif significatif sur la qualit\u00e9 de vie d\u2019une personne et, en fin de compte, pour aider \u00e0 am\u00e9liorer les soins prodigu\u00e9s aux personnes vivant avec la CBP.&nbsp;<\/p>\n\n\n\n<p>\u00c9coutez l\u2019interview compl\u00e8te ci-dessous.\u00a0<\/p>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h2 class=\"video-card-block-title hidden\"><\/h2>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"LONG SANDRA DAVID\" src=\"https:\/\/player.vimeo.com\/video\/889142628?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<!--Alert Card Layout Start Here-->\n<section class=\"alertcard-section\">\n      <div class=\"container\">\n        <!--Alert Box HTML Start Here-->\n        <div class=\"alert-box general-box\">\n                    <div class=\"info-icon\">\n              <span class=\"info-circle\"><img decoding=\"async\" src=\"https:\/\/www.ipsen.com\/wp-content\/themes\/ipsen-main\/dist\/images\/alert-general-icon.png\" alt=\"Ic\u00f4ne d'alerte\" title=\"Ic\u00f4ne d'alerte\" \/><\/i>\n            <\/div>\n                    <div class=\"info-contents\">\n            <p class=\"info-head visible\">R\u00e9f\u00e9rences<\/p>\n            <p class=\"info-sub-head-para hidden\"><\/p>\n            <div class=\"alert-content visible\"><ol>\n<li><em>Younossi ZM, et al. 2019. Diagnosis and Management of Primary Biliary Cholangitis. Am J Gastroenterol. 114(1):48\u201363.\u00a0<\/em><\/li>\n<li><em>Galoosian A, et al. 2020. Clinical updates in primary biliary cholangitis: trends, epidemiology, diagnostics, and new therapeutic approaches.\u202fJ Clin Transl Hepatol.\u202f8(1), pp. 49-60.\u00a0\u00a0<\/em><\/li>\n<li><em>Primary Biliary Cholangitis. British Liver Trust. https:\/\/britishlivertrust. org.uk\/information-and-support\/liver-conditions\/primary-biliary- cholangitis\/. Accessed October 2023.\u00a0\u00a0<\/em><\/li>\n<li><em>Joshita S, et al. 2018. Genetics and epigenetics in the pathogenesis of primary biliary cholangitis. Clin J Gastroenterol. 11, 11\u201318.\u00a0\u00a0<\/em><\/li>\n<li><em>Selmi C, et al. 2007. Quality of life and everyday activities in patients with primary biliary cirrhosis. Hepatology. 46(6), pp.1836-1843.\u00a0<\/em><\/li>\n<li><em>Jung HE, et al. Prognostic indicators in primary biliary cirrhosis: significance of revised IAHG (International Autoimmune Hepatitis Group) score. Clin Mol Hepatol. 2012;18(4):375-382.\u00a0<\/em><\/li>\n<li><em>Koulentaki M, et al. Prognosis of ursodeoxycholic Acid-treated patients with primary biliary cirrhosis. Results of a 10-yr cohort study involving 297 patients. Am J Gastroenterol. 2006;101:541-546.\u00a0<\/em><\/li>\n<li><em>Mells GF, et al. 2013. Impact of Primary Biliary Cholangitis on Perceived Quaity of Life: The UK-PBC National Study. Hepatology. 58:273-283.\u00a0<\/em><\/li>\n<li><em>Milovanovic T, et al. Quality of Life in Patients with Primary Biliary Cholangitis: A Single-Center Experience in Serbia. Dig Dis. 2020;38:515-521.\u00a0<\/em><\/li>\n<li><em>Oeda S, et al. Prevalence of pruritus in patients with chronic liver disease: A multicenter study. Hepatol Res. 2018;48:E252-E262.\u00a0<\/em><\/li>\n<li><em>Gungabissoon U, et al. 2022. Disease burden of primary biliary cholangitis and associated pruritus based on a cross-sectional US claims analysis. BMJ Open Gastroenterol. 9(1), p.e000857.\u00a0<\/em><\/li>\n<\/ol>\n<\/div>\n          <\/div>\n        <\/div>\n        <!--Alert Box HTML Start Here-->\n      <\/div>\n    <\/section>\n<!--Alert Card Layout End Here-->\n","protected":false},"excerpt":{"rendered":"<p>\u00ab L\u2019important dans le cas de la CBP est d\u2019adopter une vision globale et de se demander : quels sont<\/p>\n","protected":false},"author":11,"featured_media":45879,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-45887","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Cholangite biliaire primitive\u202f: la puissance des r\u00e9sultats rapport\u00e9s par les patients\u00a0 - 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