{"id":21940,"date":"2024-07-31T10:26:11","date_gmt":"2024-07-31T10:26:11","guid":{"rendered":"https:\/\/www.desmoidtumours.eu\/esperienza-del-della-paziente\/"},"modified":"2026-02-11T14:08:27","modified_gmt":"2026-02-11T14:08:27","slug":"esperienza-dei-pazienti","status":"publish","type":"page","link":"https:\/\/www.desmoidtumours.eu\/it\/esperienza-dei-pazienti\/","title":{"rendered":"Esperienza dei pazienti"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"21940\" class=\"elementor elementor-21940 elementor-20141\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-96431bf e-flex e-con-boxed e-con e-parent\" data-id=\"96431bf\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5a3be09 elementor-widget elementor-widget-spacer\" data-id=\"5a3be09\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-1557d572 the7-e-sticky-row-yes e-flex e-con-boxed e-con e-parent\" data-id=\"1557d572\" data-element_type=\"container\" id=\"sub-nav-bar\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;the7_sticky_row&quot;:&quot;yes&quot;,&quot;the7_sticky_row_offset&quot;:116,&quot;the7_sticky_row_offset_tablet_extra&quot;:60,&quot;the7_sticky_row_offset_tablet&quot;:50,&quot;the7_sticky_row_offset_mobile&quot;:60,&quot;the7_sticky_row_devices&quot;:[&quot;desktop&quot;,&quot;laptop&quot;,&quot;tablet_extra&quot;,&quot;tablet&quot;,&quot;mobile&quot;]}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-6a5e6272 e-con-full e-flex e-con e-child\" data-id=\"6a5e6272\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-711ce65a elementor-widget elementor-widget-text-editor\" data-id=\"711ce65a\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p><a href=\"#delayed-diagnosis-misdiagnosis\">Diagnosi ritardata\/errata<\/a><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-31b511bd e-con-full e-flex e-con e-child\" data-id=\"31b511bd\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-38879a0d elementor-widget elementor-widget-text-editor\" data-id=\"38879a0d\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p><a href=\"#disease-burden\">Carico della malattia<\/a><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-6408f25f e-con-full e-flex e-con e-child\" data-id=\"6408f25f\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-1f0e8b0c elementor-widget elementor-widget-text-editor\" data-id=\"1f0e8b0c\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p><a href=\"#unmet-need\">Esigenza insoddisfatta<\/a><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-5356d6e3 e-con-full e-flex e-con e-parent\" data-id=\"5356d6e3\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-4ccba860 e-flex e-con-boxed e-con e-child\" data-id=\"4ccba860\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4f5fc988 elementor-widget elementor-widget-heading\" data-id=\"4f5fc988\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Esperienza del paziente<\/h1>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-a66be7c e-con-full section e-flex e-con e-parent\" data-id=\"a66be7c\" data-element_type=\"container\" id=\"delayed-diagnosis-misdiagnosis\">\n\t\t<div class=\"elementor-element elementor-element-2549a34 e-flex e-con-boxed e-con e-child\" data-id=\"2549a34\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-7703b35 e-con-full e-flex e-con e-child\" data-id=\"7703b35\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-0a1874b elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"0a1874b\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h2 class=\"the7-heading-title elementor-size-default\">Diagnosi ritardata\/errata<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-dc887e5 e-con-full e-flex e-con e-child\" data-id=\"dc887e5\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-6cec4f9 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"6cec4f9\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h4 class=\"the7-heading-title elementor-size-default\">Una buona conoscenza del tumore desmoide \u00e8 importante per una diagnosi tempestiva e una gestione tempestiva e appropriata della malattia<sup>1<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-24c4b7f elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"24c4b7f\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul><li>I pazienti con tumori desmoidi devono affrontare molte difficolt\u00e0, tra cui <strong>ritardi o errori della diagnosi<\/strong> a causa della mancanza di conoscenza di questo tumore<sup>1<\/sup><\/li><li>La diagnosi errata \u00e8 comune nelle malattie rare, come i tumori desmoidi, e porta a <strong>errori nella gestione e nel trattamento della malattia<\/strong><sup>1<\/sup><\/li><li>Il <strong>30%-40% dei casi di tumore desmoide \u00e8 stato diagnosticato erroneamente<\/strong>; un\u2019indagine francese condotta a livello nazionale ha dimostrato che un terzo dei casi era stato diagnosticato erroneamente<sup>1<\/sup><\/li><li>In uno studio condotto su un focus group \u00e8 emerso che in diversi casi \u00e8 stata comunicata una diagnosi iniziale di \u201ctumore\u201d o di \u201csarcoma maligno\u201d\u00a0con prognosi incerta causando <strong>stress emotivo<\/strong><sup>1<\/sup><\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-49fb880 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"49fb880\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h4 class=\"the7-heading-title elementor-size-default\">I ritardi nella diagnosi sono una sfida persistente<sup>1<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c4c5075 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"c4c5075\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>I pazienti hanno sperimentato un lungo iter diagnostico nell&#8217;ambito dell\u2019assistenza sanitaria primaria e secondaria, e sono stati trasferiti da un ospedale ad un altro con conseguente frustrazione per la mancanza di continuit\u00e0 e per le opinioni divergenti dei medici a ogni appuntamento in ospedale.<sup>1<\/sup><\/p><ul><li>I ritardi correlati al paziente possono derivare dall\u2019<strong>incapacit\u00e0 di riconoscere l\u2019importanza dei sintomi<\/strong><sup>1<\/sup><\/li><li>I ritardi correlati agli operatori sanitari possono derivare da:<sup>1<\/sup><ul><li>Contesti medici in cui manca una competenza specifica sui tumori desmoidi<\/li><li>Rischio di rinvio non corretto<\/li><li>Pi\u00f9 visite da parte di operatori sanitari prima di una diagnosi corretta<\/li><\/ul><\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-eb76f8c elementor-widget elementor-widget-the7_button_widget\" data-id=\"eb76f8c\" data-element_type=\"widget\" data-widget_type=\"the7_button_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<div class=\"elementor-button-wrapper\"><a href=\"https:\/\/www.desmoidtumours.eu\/it\/diagnosi\/\" class=\"box-button elementor-button elementor-size-md\">Scopri di pi\u00f9 sulla diagnosi di tumore desmoide<\/a><\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-bd7809d e-con-full section e-flex e-con e-parent\" data-id=\"bd7809d\" data-element_type=\"container\" id=\"disease-burden\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-57290d6 e-flex e-con-boxed e-con e-child\" data-id=\"57290d6\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-4bcd2c9 e-con-full e-flex e-con e-child\" data-id=\"4bcd2c9\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-c056ad2 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"c056ad2\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h2 class=\"the7-heading-title elementor-size-default\">Carico della malattia<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7d12b1e elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"7d12b1e\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"the7-heading-title elementor-size-default\">Panoramica<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-243b6b3 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"243b6b3\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h4 class=\"the7-heading-title elementor-size-default\">I tumori desmoidi sono descritti come <i>benigni<\/i> ma, in alcuni casi, sono associati a una malattia significativa<sup>3<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fa3a174 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"fa3a174\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul><li>A causa della loro istologia e dell\u2019incapacit\u00e0 di metastatizzare, i tumori desmoidi sono talvolta descritti come <em>benigni<\/em><sup>2<\/sup><\/li><li><em>Benigni<\/em> pu\u00f2 anche far pensare a un percorso terapeutico gestibile che potrebbe non corrispondere alla realt\u00e0<sup>3<\/sup><\/li><li>A seconda della sede, i tumori desmoidi possono causare dolore debilitante, deformit\u00e0 e persino danni ad organi potenzialmente letali<sup>1<\/sup><\/li><li>I bordi reali dei tumori desmoidi possono non essere identificabili in quanto possono infiltrarsi nel tessuto circostante comprimendo muscoli, nervi e vasi, e complicando i tentativi di ottenere margini puliti senza causare morbilit\u00e0<sup>4,5,6<\/sup><\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-fd6b5fb e-con-full e-flex e-con e-child\" data-id=\"fd6b5fb\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4652259 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"4652259\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h4 class=\"the7-heading-title elementor-size-default\">I pazienti possono sperimentare una serie di problemi fisici, psicologici e pratici correlati al decorso imprevedibile e all\u2019aggressivit\u00e0 dei tumori desmoidi<sup>7<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7cd2709 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"7cd2709\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul><li>I pazienti possono sperimentare una qualit\u00e0 della vita compromessa a causa delle difficolt\u00e0 diagnostiche e dell\u2019elevato carico clinico dei tumori desmoidi, tra cui dolore grave, compromissione della funzionalit\u00e0 fisica e della mobilit\u00e0 oltre ad alti tassi di recidiva<sup>1<\/sup><\/li><li>Tutto ci\u00f2 pu\u00f2 limitare le loro attivit\u00e0 quotidiane e portare a un deterioramento del funzionamento fisico, sociale ed emotivo<sup>1<\/sup><\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-8cf599c content-align-center the7-hover-visibility-disabled transform-overlay-yes exceeding-frame-yes elementor-widget elementor-widget-the7-image-widget\" data-id=\"8cf599c\" data-element_type=\"widget\" data-settings=\"{&quot;hover_visibility&quot;:&quot;disabled&quot;}\" data-widget_type=\"the7-image-widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<div class=\"the7-image-container\"><div class=\"the7-image-wrapper the7-elementor-widget the7-transform-container\"><div class=\"post-thumbnail-rollover layzr-bg img-css-resize-wrapper\"><img fetchpriority=\"high\" decoding=\"async\" width=\"2560\" height=\"1135\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D&#039;http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg&#039;%20viewBox%3D&#039;0%200%202560%201135&#039;%2F%3E\" class=\"attachment-full size-full preload-me aspect lazy lazy-load\" alt=\"\" sizes=\"(max-width: 2560px) 100vw, 2560px\" style=\"--ratio: 2560 \/ 1135;\" data-src=\"https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/02\/Springworks_charts_IT-ES_2-scaled.png\" loading=\"eager\" data-srcset=\"https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/02\/Springworks_charts_IT-ES_2-scaled.png 2560w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/02\/Springworks_charts_IT-ES_2-300x133.png 300w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/02\/Springworks_charts_IT-ES_2-1024x454.png 1024w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/02\/Springworks_charts_IT-ES_2-768x341.png 768w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/02\/Springworks_charts_IT-ES_2-1536x681.png 1536w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/02\/Springworks_charts_IT-ES_2-2048x908.png 2048w\" \/><\/div><\/div><\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7a71346 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"7a71346\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>Elaborato dalla tabella 1, riferimento 1 e tabella 2, riferimento 8.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-af6010c elementor-widget elementor-widget-the7-accordion\" data-id=\"af6010c\" data-element_type=\"widget\" data-widget_type=\"the7-accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-accordion the7-adv-accordion\" data-accordion-type=\"accordion\" role=\"tablist\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<h5 id=\"elementor-tab-title-1831\" class=\"elementor-tab-title the7-accordion-header deactive-default\" data-tab=\"1\" role=\"tab\" aria-controls=\"elementor-tab-content-1831\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-plus\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H272V64c0-17.67-14.33-32-32-32h-32c-17.67 0-32 14.33-32 32v144H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h144v144c0 17.67 14.33 32 32 32h32c17.67 0 32-14.33 32-32V304h144c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" href=\"\">Descrizione dello studio<\/a>\n\t\t\t\t\t<\/h5>\n\t\t\t\t\t<div id=\"elementor-tab-content-1831\" class=\"elementor-tab-content elementor-clearfix deactive-default\" data-tab=\"1\" role=\"tabpanel\" aria-labelledby=\"elementor-tab-title-1831\"><p>I dati ottenuti da uno studio di convalida degli esiti riferiti dal\/dalla paziente (patient-reported outcome, PRO) della Memorial Sloan Kettering\/Desmoid Tumor Research Foundation includevano pazienti con tumori desmoidi (n=31, fascia di et\u00e0 20-68, 77% di sesso femminile). I\/le pazienti hanno partecipato a interviste telefoniche qualitative di 60 minuti per fornire le loro prospettive sui sintomi della malattia e l\u2019impatto sulla loro qualit\u00e0 della vita. La maggior parte dei\/le pazienti in questo studio era sintomatica (84%). La sede e il tipo di tumore variavano tra i\/le pazienti. I concetti discussi durante le interviste sono stati utilizzati per sviluppare una bozza della scala PRO che \u00e8 stata ulteriormente perfezionata nelle interviste cognitive di ulteriori pazienti con tumori desmoidi (n=15).<sup>8<\/sup><\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ab14cd6 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"ab14cd6\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"the7-heading-title elementor-size-default\">Dolore<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fff1bdf elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"fff1bdf\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul><li>Tra tutti i sintomi manifestati dai pazienti con tumori desmoidi, il dolore \u00e8 il pi\u00f9 debilitante e ha un grande impatto sulla qualit\u00e0 della vita<sup>1<\/sup><ul><li>In un sondaggio condotto dall&#8217;associazione di pazienti francese <em>SOS Desmo\u00efde<\/em>, il<strong> dolore era presente nel 63% dei casi<\/strong><sup>1<\/sup><\/li><li>In uno studio condotto nell&#8217;ambito di un focus group la dipendenza da antidolorifici era una preoccupazione significativa per diversi pazienti, mentre altri hanno scoperto che il dolore <strong>non rispondeva agli analgesici<\/strong><sup>1<\/sup><\/li><\/ul><\/li><li>Secondo i dati della coorte clinico-biologica prospettica nazionale francese ALTITUDES sui casi di fibromatosi di tipo desmoide di nuova diagnosi, i due fattori determinanti del dolore erano la dimensione del tumore e la sede. Il dolore era pi\u00f9 frequente per il tumore desmoide localizzato nel collo e nella spalla (RP: 3,05; IC al 95%: 1,27-7,29) e meno frequente per il tumore desmoide situato nella parete addominale (RP: 0,52; IC al 95%: 0,31-0,86) o nel tessuto molle intra-addominale o pelvico (RP: 0,42; IC al 95%: 0,19-0,93, p&lt;0,001)<sup>9<\/sup><\/li><li>Il dolore era pi\u00f9 frequente nei tumori di dimensioni superiori a 50 mm (RP: 1,77; IC al 95%: 1,13-2,77; P=0,013)<sup>9<\/sup><\/li><li>La presenza di dolore alla diagnosi era associata a <strong>una prognosi peggiore<\/strong>, indipendentemente dal trattamento di prima linea (rapporto di rischio, 2,0; IC al 95%, 1,3\u20132,9; P = 0,006)<sup>1<\/sup><ul><li>La probabilit\u00e0 di sopravvivenza libera da eventi a 3 anni in assenza di dolore al basale era del 72,2% (IC al 95%: 65,1\u201378,1) e del 53,9% in presenza di dolore al basale (IC al 95%: 43,3\u201363,4)<sup>1<\/sup><\/li><\/ul><\/li><li>Il dolore era associato anche a\u00a0un <b>Performance Status\u00a0inferiore<\/b> (P = 0,024) e a <strong>compromissione funzionale<\/strong> (P = 0,001)<sup>1<\/sup><\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-003b82a elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"003b82a\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"the7-heading-title elementor-size-default\">Impatto funzionale<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e30da43 no-link bullet-custom content-align-left icon-box-vertical-align-top icon-position-left icon-vertical-align-start elementor-widget elementor-widget-the7_icon_box_grid_widget\" data-id=\"e30da43\" data-element_type=\"widget\" data-widget_type=\"the7_icon_box_grid_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<div 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\t<li>Riduzione dell'ampiezza dei movimenti (68%)<\/li>\n \t<li>Dolore muscolare (65%)<\/li>\n \t<li>Affaticamento (65%)<\/li>\n<\/ul><\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Impatto riportato pi\u00f9 frequentemente sulla vita dei\/le pazienti&lt;sup&gt;1,8&lt;\/sup&gt;\">\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"401\" height=\"401\" viewBox=\"0 0 401 401\" fill=\"none\"><g clip-path=\"url(#clip0_313_701)\"><path opacity=\"0.3\" d=\"M373.693 26.3073C338.617 -8.7691 281.786 -8.7691 246.71 26.3073C233.174 39.8429 224.997 56.6064 221.92 74.1016C221.834 74.5104 221.705 74.7902 221.618 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244.468 241.11 243.445L202.657 239.355\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M191.331 187.428C203.705 187.428 212.935 177.073 212.935 164.289V156.568C212.935 143.785 203.705 133.43 191.331 133.43C178.956 133.43 169.727 143.785 169.727 156.568V164.289C169.727 177.073 178.956 187.428 191.331 187.428Z\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M158.937 371V243.522\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M185.936 371L191.331 290.004\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M223.724 371V246.411\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M196.725 371L191.331 290.004\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M145.43 110H239.102C265.243 110 263.337 74.43 239.102 73.956C247.354 61.4171 234.229 46.5945 220.519 44.3754C199.965 41.036 187.252 61.0724 187.252 61.0724C187.252 61.0724 167.803 47.8226 154.613 53.0794C137.286 59.9952 143.697 77.4462 143.697 77.4462C143.697 77.4462 123.252 73.8052 118.725 88.6278C114.199 103.45 131.807 110 145.386 110H145.43Z\" fill=\"#005EA7\"><\/path><\/g><defs><clipPath id=\"clip0_313_701\"><rect width=\"400.451\" height=\"400.451\" fill=\"white\" transform=\"translate(0.00170898)\"><\/rect><\/clipPath><\/defs><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Impatto riportato pi\u00f9 frequentemente sulla vita dei\/le pazienti&lt;sup&gt;1,8&lt;\/sup&gt;\">\t\t\t\t\t\t\t\t\t\t\t\tImpatto riportato pi\u00f9 frequentemente sulla vita dei\/le pazienti<sup>1,8<\/sup>\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-description\"><ul>\n \t<li>Paura (84%)<\/li>\n \t<li>Disturbi del sonno (77%)<\/li>\n \t<li>Preoccupazione per la mancanza di conoscenza tra gli operatori sanitari (74%)<\/li>\n<\/ul><\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3fa6d3b elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"3fa6d3b\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p><strong>La deformit\u00e0<\/strong> (alterazione con impatto funzionale) \u00e8 comune e spesso \u00e8 il risultato di un intervento chirurgico.<sup>10<\/sup><\/p><p>In uno studio, tutti i pazienti con tumori desmoidi delle estremit\u00e0 (n=21) hanno manifestato compromissione funzionale nelle articolazioni adiacenti dopo l\u2019intervento chirurgico.<sup>10<\/sup><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-e516e9a e-con-full e-flex e-con e-child\" data-id=\"e516e9a\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5759151 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"5759151\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"the7-heading-title elementor-size-default\">Impatto emotivo e sociale<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e558691 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"e558691\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h4 class=\"the7-heading-title elementor-size-default\">I tumori desmoidi possono avere un impatto importante su molti aspetti della vita dei pazienti, comprese le interazioni sociali, la capacit\u00e0 di lavorare e le relazioni<sup>7<\/sup> <\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-db0ac42 no-link bullet-custom content-align-left icon-box-vertical-align-top icon-position-left icon-vertical-align-start elementor-widget elementor-widget-the7_icon_box_grid_widget\" data-id=\"db0ac42\" data-element_type=\"widget\" data-widget_type=\"the7_icon_box_grid_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<div class=\"the7-box-grid-wrapper the7-elementor-widget loading-effect-none 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problemi di pianificazione familiare, incertezza<sup>11<\/sup><\/li>\n \t<li>Ansia, depressione e scarso benessere sono stati segnalati come pi\u00f9 gravi nei pazienti con tumori desmoidi della parete addominale rispetto ai pazienti con sarcoma maligno<sup>12<\/sup><\/li>\n<\/ul><\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Vita sociale\">\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"398\" height=\"400\" viewBox=\"0 0 398 400\" fill=\"none\"><g clip-path=\"url(#clip0_377_232)\"><path opacity=\"0.3\" d=\"M371.815 26.2951C336.916 -8.77937 280.371 -8.77937 245.472 26.2951C232.004 39.83 223.868 56.5926 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123.41 268.998V213.438C123.41 193.405 114.846 177.115 94.9129 177.115H72.6888C52.7556 177.115 44.1914 193.405 44.1914 213.438V268.998C44.1914 272.806 47.2745 275.905 51.0642 275.905C54.8538 275.905 57.9155 272.806 57.9155 268.998V212.9V307.149M83.8009 307.149V269.019\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-miterlimit=\"10\"><\/path><path d=\"M228.837 100.313L264.674 13L193.633 113.82L281.29 111.441L193 223.302L258.478 99.0646L228.837 100.313Z\" fill=\"white\" stroke=\"#005EA7\" stroke-width=\"7.58\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><\/g><defs><clipPath id=\"clip0_377_232\"><rect width=\"398\" height=\"400\" fill=\"white\"><\/rect><\/clipPath><\/defs><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Vita sociale\">\t\t\t\t\t\t\t\t\t\t\t\tVita sociale\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-description\"><ul>\n \t<li>Interruzioni del lavoro, impatto sulla vita familiare e sui rapporti sociali, stress finanziario<sup>3,11<\/sup><\/li>\n<\/ul><\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4a36386 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"4a36386\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h3 class=\"the7-heading-title elementor-size-default\">Qualit\u00e0 della vita correlata alla salute (HRQoL)<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ec70d47 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"ec70d47\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h4 class=\"the7-heading-title elementor-size-default\">Il carico sintomatologico sostanziale, la natura cronica e i bassi tassi di mortalit\u00e0 rendono la valutazione della qualit\u00e0 della vita correlata alla salute (Health-related quality of life, HRQoL) altamente rilevante nei\/le pazienti con tumori desmoidi<sup>7<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-515f0de elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"515f0de\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul><li>L\u2019HRQoL fornisce importanti informazioni aggiuntive insieme a misure di esito oggettive per valutare il beneficio clinico del trattamento<sup>7<\/sup><\/li><li>Negli ultimi anni sono stati sviluppati due strumenti HRQoL specifici per i tumori desmoidi per misurarne i sintomi e l\u2019impatto della malattia che questi generano<sup>7<\/sup><ul><li><b>GODDESS <\/b>\u00e8 uno strumento validato sviluppato sia per i tumori desmoidi sporadici che per quelli associati a FAP<sup>7<\/sup><\/li><li>Il <strong>questionario DTF\u2010QoL<\/strong> \u00e8 stato sviluppato per i tumori desmoidi sporadici ed \u00e8 progettato per essere utilizzato in combinazione con il questionario EORTC QLQ\u2010C30<sup>7<\/sup><\/li><\/ul><\/li><li>Entrambi i questionari specifici per i tumori desmoidi possono essere utilizzati in studi clinici futuri e nell\u2019assistenza clinica<sup>7<\/sup><\/li><li>L\u2019uso di questi strumenti HRQoL specifici per il tumore desmoide pu\u00f2 aiutare a identificare i pazienti a rischio di esiti infausti e fornire cure pi\u00f9 personalizzate<sup>7<\/sup><\/li><\/ul>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-399e575 elementor-widget elementor-widget-the7_button_widget\" data-id=\"399e575\" data-element_type=\"widget\" data-widget_type=\"the7_button_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<div class=\"elementor-button-wrapper\"><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC11166168\/pdf\/cmar-16-617.pdf\" class=\"box-button elementor-button elementor-size-md\">Scopri di pi\u00f9 su GODDESS e DTF-QoL<\/a><\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-6e0bb2f e-con-full section e-flex e-con e-parent\" data-id=\"6e0bb2f\" data-element_type=\"container\" id=\"unmet-need\">\n\t\t<div class=\"elementor-element elementor-element-6abdfea e-flex e-con-boxed e-con e-child\" data-id=\"6abdfea\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-4fef302 e-con-full e-flex e-con e-child\" data-id=\"4fef302\" data-element_type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-c518d9a e-con-full e-flex e-con e-child\" data-id=\"c518d9a\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-bdbc683 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"bdbc683\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h2 class=\"the7-heading-title elementor-size-default\">Esigenza insoddisfatta<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9862c4d elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"9862c4d\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h4 class=\"the7-heading-title elementor-size-default\">I pazienti hanno bisogno di ottenere un controllo efficace della malattia e di constatare un miglioramento dei sintomi<sup>1, 13<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c5947fc elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"c5947fc\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>Gli obiettivi del trattamento dei tumori desmoidi includono:<sup>13<\/sup><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-0e71403 e-con-full e-flex e-con e-child\" data-id=\"0e71403\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-864149b no-link content-align-left icon-box-vertical-align-top icon-position-left icon-vertical-align-start elementor-widget elementor-widget-the7_icon_box_grid_widget\" data-id=\"864149b\" data-element_type=\"widget\" data-widget_type=\"the7_icon_box_grid_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<div class=\"the7-box-grid-wrapper the7-elementor-widget loading-effect-none the7_icon_box_grid_widget-864149b\">\t\t\t<div class=\"dt-css-grid\">\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Controllo del tumore a lungo termine senza compromettere la struttura o la funzione\">\t\t\t\t\t\t\t\t\t\t<div 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fill=\"white\"><\/rect><\/clipPath><\/defs><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Controllo del tumore a lungo termine senza compromettere la struttura o la funzione\">\t\t\t\t\t\t\t\t\t\t\t\tControllo del tumore a lungo termine senza compromettere la struttura o la funzione\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Una riduzione del carico sintomatologico specifico del tumore desmoide (per es., dolore) e il suo 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110H239.102C265.243 110 263.337 74.43 239.102 73.956C247.354 61.4171 234.229 46.5945 220.519 44.3754C199.965 41.036 187.252 61.0724 187.252 61.0724C187.252 61.0724 167.803 47.8226 154.613 53.0794C137.286 59.9952 143.697 77.4462 143.697 77.4462C143.697 77.4462 123.252 73.8052 118.725 88.6278C114.199 103.45 131.807 110 145.386 110H145.43Z\" fill=\"#005EA7\"><\/path><\/g><defs><clipPath id=\"clip0_313_701\"><rect width=\"400.451\" height=\"400.451\" fill=\"white\" transform=\"translate(0.00170898)\"><\/rect><\/clipPath><\/defs><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Miglioramento della qualit\u00e0 della vita complessiva\">\t\t\t\t\t\t\t\t\t\t\t\tMiglioramento della qualit\u00e0 della vita complessiva\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5aca8c3 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"5aca8c3\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>\u00c8 importante che i pazienti siano valutati da un team multidisciplinare con competenze ed esperienza nell\u2019ambito dei sarcomi per ottimizzare la gestione dei pazienti e realizzare gli obiettivi del trattamento.<sup>1<\/sup><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c6147d2 elementor-widget elementor-widget-the7_button_widget\" data-id=\"c6147d2\" data-element_type=\"widget\" data-widget_type=\"the7_button_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<div class=\"elementor-button-wrapper\"><a href=\"https:\/\/www.desmoidtumours.eu\/it\/diagnosi\/\" class=\"box-button elementor-button elementor-size-md\">Scopri di pi\u00f9 sulla diagnosi del tumore desmoide<\/a><\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1bf6674 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"1bf6674\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>DTF-QoL, questionario HRQoL specifico per la fibromatosi di tipo desmoide; EORTC QLQ-C30, Questionario principale sulla qualit\u00e0 della vita dell\u2019Organizzazione europea per la ricerca e il trattamento del cancro composto da 30 domande; GODDESS, Scala di Gounder per i sintomi\/impatto dei tumori desmoidi; HRQoL, Qualit\u00e0 della vita correlata alla salute; PRO, Esito riferito dal\/dalla paziente.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-c501560 e-con-full e-flex e-con e-parent\" data-id=\"c501560\" data-element_type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-3091c6d e-flex e-con-boxed e-con e-child\" data-id=\"3091c6d\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-7d78b82 e-con-full e-flex e-con e-child\" data-id=\"7d78b82\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-f5d4596 elementor-widget elementor-widget-the7-accordion\" data-id=\"f5d4596\" data-element_type=\"widget\" data-widget_type=\"the7-accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-accordion the7-adv-accordion\" data-accordion-type=\"accordion\" role=\"tablist\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<h5 id=\"elementor-tab-title-2571\" class=\"elementor-tab-title the7-accordion-header deactive-default\" data-tab=\"1\" role=\"tab\" aria-controls=\"elementor-tab-content-2571\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-plus\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H272V64c0-17.67-14.33-32-32-32h-32c-17.67 0-32 14.33-32 32v144H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h144v144c0 17.67 14.33 32 32 32h32c17.67 0 32-14.33 32-32V304h144c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" href=\"\">Riferimenti<\/a>\n\t\t\t\t\t<\/h5>\n\t\t\t\t\t<div id=\"elementor-tab-content-2571\" class=\"elementor-tab-content elementor-clearfix deactive-default\" data-tab=\"1\" role=\"tabpanel\" aria-labelledby=\"elementor-tab-title-2571\"><ol>\n<li>Bektas M et al. Desmoid tumors: a comprehensive review. <em>Adv Ther<\/em>. 2023 40(9):3697-3722.<\/li>\n<li>Joglekar SB et al. Current perspectives on desmoid tumors: the Mayo Clinic approach. <em>Cancers<\/em> (<em>Basel<\/em>).\u202f2011;3(3):3143-3155.<\/li>\n<li>Husson et al. Desmoid fibromatosis through the patients\u2019 eyes: time to change the focus and organisation of care?\u202f<em>Support Care Cancer.<\/em> 2019;27(3):965-980.<\/li>\n<li>Constantinidou A et al. Clinical presentation of desmoid tumors. In: Litchman C, ed. Desmoid Tumors. Springer; 2012:chap 2. Accesso 9 aprile 2024. https:\/\/www.researchgate.net\/publication\/226455135.<\/li>\n<li>Bonvalot S et al. The treatment of desmoid tumors: a stepwise clinical approach. <em>Ann Oncol<\/em>. 2012;23(suppl 10):x158-x166.<\/li>\n<li>Skubitz KM. Biology and treatment of aggressive fibromatosis or desmoid tumor. <em>Mayo Clin Proc<\/em>. 2017;92(6):947-964.<\/li>\n<li>Kasper B et al. Desmoid tumor working group. Current management of desmoid tumors: a review. [supplementary appendix] <em>JAMA Oncol<\/em>. <span class=\"ui-provider a b c d e f g h i j k l m n o p q r s t u v w x y z ab ac ae af ag ah ai aj ak\" dir=\"ltr\">2024;10(8):1121-1128<\/span>.<\/li>\n<li>Gounder MM et al. Prospective development of a patient-reported outcomes instrument for desmoid tumors or aggressive fibromatosis. <em>Cancer<\/em>. 2020;126(3):531-539.<\/li>\n<li>Penel N et al. Pain in desmoid-type fibromatosis: prevalence, determinants and prognosis value. Int J Cancer. 2023;153(2):407-416.<\/li>\n<li>Nishida Y et al. Transition of treatment for patients with extra-abdominal desmoid tumors: nagoya university modality. <em>Cancers<\/em> (<em>Basel<\/em>). 2012;4(1):88-99.<\/li>\n<li>Timbergen MJM et al. Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study. <em>Qual Life Res<\/em>. 2018;27(12):3097-3111.<\/li>\n<li>Ingley KM et al. High prevalence of persistent emotional distress in desmoid tumor. <em>Psychooncology<\/em>. 2020;29(2):311-320.<\/li>\n<li>Fernandez MM et al. Disease and economic burden of surgery in desmoid tumors: a review<em>.<\/em> <em>Expert Rev Pharmacoecon Outcomes Res<\/em>. 2023;23(6):607-618.<\/li>\n<\/ol>\n<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Diagnosi ritardata\/errata Carico della malattia Esigenza insoddisfatta Esperienza del paziente Diagnosi ritardata\/errata Una buona conoscenza del tumore desmoide \u00e8 importante per una diagnosi tempestiva e una gestione tempestiva e appropriata della malattia1 I pazienti con tumori desmoidi devono affrontare molte difficolt\u00e0, tra cui ritardi o errori della diagnosi a causa della mancanza di conoscenza di&hellip;<\/p>\n","protected":false},"author":9,"featured_media":0,"parent":0,"menu_order":5,"comment_status":"closed","ping_status":"closed","template":"elementor_header_footer","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-21940","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Tumori desmoidi: esperienza del\/della paziente | SpringWorks Therapeutics<\/title>\n<meta name=\"description\" content=\"Scopri la gamma di sfide che i\/le pazienti affetti\/e da tumori desmoidi manifestano, tra cui ritardo nella diagnosi, diagnosi errata, carico della malattia ed esigenze insoddisfatte.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.desmoidtumours.eu\/it\/esperienza-dei-pazienti\/\" \/>\n<meta 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