{"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\/de\/guidelines\/patient-journeys\/","title":{"rendered":"Patientenwege"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Patientenberichte sind von den Patienten selbst verfasste Leitf\u00e4den, in denen eine seltene Erkrankung anhand der <strong>Alltagserfahrungen<\/strong> und<strong> Lebensperspektive<\/strong> der Betroffenen. Mit anderen Worten: Sie veranschaulichen, welchen typischen klinischen Verlauf Patienten bei einer bestimmten Erkrankung durchlaufen.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patientenwege sollen allen Zielgruppen schnell leicht verst\u00e4ndliche Informationen vermitteln. Daher sind sie in der Regel sehr kurz und visuell gestaltet (siehe Beispiel unten). Sie richten sich an:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>die Patienten selbst \u2013 Informationen sind entscheidend, um Patienten zu st\u00e4rken und sie in die Entscheidungsfindung bez\u00fcglich ihrer Versorgung einzubeziehen;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Fachkr\u00e4fte im Gesundheitswesen wie Pflegekr\u00e4fte, Psychologen, Haus\u00e4rzte oder alle anderen Fachkr\u00e4fte, die mit einer bestimmten seltenen Krankheit nicht vertraut sind; <\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>die breite \u00d6ffentlichkeit, die verstehen m\u00f6chte, was seltene Krankheiten sind und wie das Leben der Betroffenen aussieht.<\/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>Beispiel f\u00fcr den Behandlungsverlauf eines Prader-Willi-Patienten (unten zum Herunterladen verf\u00fcgbar)<\/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\">Die Arbeitsgruppe \u201eITHACA-Leitlinien\u201c arbeitet an der Erstellung <strong>Neue Behandlungswege f\u00fcr seltene Fehlbildungen oder neurologische Entwicklungsst\u00f6rungen<\/strong>. Bislang hat das ERN Patientenpfade f\u00fcr die folgenden seltenen Krankheiten ver\u00f6ffentlicht. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Wir empfehlen den Patienten, diese zu nutzen und sie an alle medizinischen Fachkr\u00e4fte weiterzuleiten, mit denen sie in Kontakt kommen, und den medizinischen Fachkr\u00e4ften selbst, sie an ihre Patienten weiterzugeben.<\/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\">PITT-HOPKINS-SYNDROM<\/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\">PRADER-WILLI-SYNDROM<\/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\">RETT-SYNDROM<\/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\">WILLIAMS-SYNDROM<\/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\">Das ERN hat au\u00dferdem einen \u201ePatient Journey\u201c-Leitfaden herausgegeben, der sich nicht auf eine bestimmte Erkrankung bezieht, sondern dazu dient, die <strong>gemeinsame Bed\u00fcrfnisse aller Patienten mit seltenen angeborenen Anomalien oder seltenen neurologischen Entwicklungsst\u00f6rungen<\/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-PATIENT \u201cALLGEMEINE BED\u00dcRFNISSE\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\/de\/guidelines\/patient-journeys\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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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