{"id":88,"date":"2022-01-26T12:30:45","date_gmt":"2022-01-26T11:30:45","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=88"},"modified":"2024-12-09T15:35:42","modified_gmt":"2024-12-09T14:35:42","slug":"patient-journeys","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/it\/guidelines\/patient-journeys\/","title":{"rendered":"Percorsi dei pazienti"},"content":{"rendered":"<p class=\"wp-block-paragraph\">I percorsi dei pazienti sono guide redatte dagli stessi pazienti che descrivono una malattia rara attraverso il <strong>esperienze quotidiane<\/strong> e<strong> lente sulla vita<\/strong> delle persone affette da tale patologia. In altre parole, descrivono quale sia, per una determinata patologia, il percorso clinico tipico che i pazienti seguono.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I \"percorsi del paziente\" hanno lo scopo di fornire rapidamente informazioni di facile comprensione a ogni tipo di pubblico. Per questo motivo sono in genere molto brevi e ricchi di elementi visivi (vedi esempio qui sotto). Sono rivolti a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>i pazienti stessi \u2013 l\u2019informazione \u00e8 fondamentale per responsabilizzarli e coinvolgerli nel processo decisionale relativo alle loro cure;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>operatori sanitari quali infermieri, psicologi, medici di base o qualsiasi altro tipo di professionista che non abbia familiarit\u00e0 con una determinata malattia rara; <\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>il grande pubblico che desidera comprendere cosa siano le malattie rare e come sia la vita di chi ne \u00e8 affetto.<\/li>\n<\/ul>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"799\" height=\"601\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png\" alt=\"\" class=\"wp-image-6218\" style=\"width:309px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454.png 799w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454-600x451.png 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-28-220454-768x578.png 768w\" sizes=\"auto, (max-width: 799px) 100vw, 799px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Esempio del percorso del paziente affetto dalla sindrome di Prader-Willi (scaricabile qui sotto)<\/em><\/p>\n\n\n\n<div style=\"height:43px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Il gruppo di lavoro sulle linee guida ITHACA si occupa della stesura <strong>nuovi percorsi clinici per le malformazioni rare o i disturbi dello sviluppo neurologico<\/strong>. Finora, l\u2019ERN ha pubblicato i percorsi dei pazienti relativi alle seguenti malattie rare. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Incoraggiamo i pazienti a utilizzarli e a inviarli a qualsiasi operatore sanitario con cui possano entrare in contatto, e invitiamo gli stessi operatori sanitari a condividerli con i propri pazienti.<\/p>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-5.pdf\"><div class=\"documents-body\">SINDROME DI PITT-HOPKINS<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-3.pdf\"><div class=\"documents-body\">SINDROME DI PRADER-WILLI<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-1.pdf\"><div class=\"documents-body\">SINDROME DI RETT<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-4.pdf\"><div class=\"documents-body\">SPINA BIFIDA<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/Patient-Journey-5-syndromes-2.pdf\"><div class=\"documents-body\">SINDROME DI WILLIAMS<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<div style=\"height:43px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">L'ERN ha inoltre pubblicato un \"Percorso del paziente\" che non si riferisce a una patologia specifica, ma ha lo scopo di illustrare il <strong>esigenze comuni a tutti i pazienti affetti da anomalie congenite rare o da disturbi neuroevolutivi rari<\/strong>:<\/p>\n\n\n\n<a class=\"wp-block-ernithaca-documents\" href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Patient-Journey-common-needs.pdf\"><div class=\"documents-body\">ITHACA \u201cESIGENZE COMUNI\u201d DEI PAZIENTI\u201d<\/div><div class=\"icon-circle\"><span class=\"icon-ernithaca-document\"><\/span><\/div><\/a>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Patient journeys are guides written by patient themselves that describe a rare disorder through the day-to-day experiences and life-lens of those living with the condition. In other words, they depict what is, for a specific condition, the typical clinical pathway patients go through. Patient Journeys are meant to quickly provide easy-to-grasp information to all kinds [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":3042,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-88","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Patient Journeys - ERN ITHACA<\/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:\/\/ern-ithaca.eu\/it\/guidelines\/patient-journeys\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Patient Journeys - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Patient journeys are guides written by patient themselves that describe a rare disorder through the day-to-day experiences and life-lens of those living with the condition. 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