{"id":21881,"date":"2024-07-31T10:26:11","date_gmt":"2024-07-31T10:26:11","guid":{"rendered":"https:\/\/www.desmoidtumours.eu\/experiencia-del-paciente\/"},"modified":"2026-03-12T10:25:39","modified_gmt":"2026-03-12T10:25:39","slug":"experiencia-del-paciente","status":"publish","type":"page","link":"https:\/\/www.desmoidtumours.eu\/es\/experiencia-del-paciente\/","title":{"rendered":"Experiencia del paciente"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"21881\" class=\"elementor elementor-21881 elementor-20141\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-30011ef1 e-flex e-con-boxed e-con e-parent\" data-id=\"30011ef1\" 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-7d3bf76e elementor-widget elementor-widget-spacer\" data-id=\"7d3bf76e\" 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-72918b2a the7-e-sticky-row-yes e-flex e-con-boxed e-con e-parent\" data-id=\"72918b2a\" 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-16ce2589 e-con-full e-flex e-con e-child\" data-id=\"16ce2589\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-47830929 elementor-widget elementor-widget-text-editor\" data-id=\"47830929\" 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\">Diagn\u00f3stico tard\u00edo\/diagn\u00f3stico err\u00f3neo<\/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-61d26251 e-con-full e-flex e-con e-child\" data-id=\"61d26251\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-586cc08a elementor-widget elementor-widget-text-editor\" data-id=\"586cc08a\" 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\">Carga de la enfermedad<\/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-884500d e-con-full e-flex e-con e-child\" data-id=\"884500d\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-689c9018 elementor-widget elementor-widget-text-editor\" data-id=\"689c9018\" 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\">Necesidad no cubierta<\/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-2ae7301f e-con-full e-flex e-con e-parent\" data-id=\"2ae7301f\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-24cd24a7 e-flex e-con-boxed e-con e-child\" data-id=\"24cd24a7\" 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-3a600323 elementor-widget elementor-widget-heading\" data-id=\"3a600323\" 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\">Experiencia del paciente<\/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-6fb693ca e-con-full section e-flex e-con e-parent\" data-id=\"6fb693ca\" data-element_type=\"container\" id=\"delayed-diagnosis-misdiagnosis\">\n\t\t<div class=\"elementor-element elementor-element-25923aaf e-flex e-con-boxed e-con e-child\" data-id=\"25923aaf\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-60193b05 e-con-full e-flex e-con e-child\" data-id=\"60193b05\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-67a1a1bb elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"67a1a1bb\" 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\">Diagn\u00f3stico tard\u00edo\/diagn\u00f3stico err\u00f3neo<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-3bb965e6 e-con-full e-flex e-con e-child\" data-id=\"3bb965e6\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4ab09beb elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"4ab09beb\" 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\">La concienciaci\u00f3n sobre el tumor desmoide es importante para un diagn\u00f3stico r\u00e1pido y un tratamiento oportuno y adecuado de la enfermedad<sup>1<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2dfcc8a9 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"2dfcc8a9\" 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>Los pacientes con tumores desmoides se enfrentan a muchos retos, incluidos <strong>el diagn\u00f3stico tard\u00edo o el diagn\u00f3stico err\u00f3neo<\/strong> debido a la falta de conocimiento<sup>1<\/sup><\/li><li>El diagn\u00f3stico err\u00f3neo es frecuente en enfermedades raras como los tumores desmoides y provoca errores en el tratamiento y el abordaje de la enfermedad<sup>1<\/sup><\/li><li><strong>Entre el 30 % y el 40 % de los casos de tumores desmoides se diagnostican err\u00f3neamente<\/strong>; una encuesta nacional francesa demostr\u00f3 que un tercio se diagnostica err\u00f3neamente<sup>1<\/sup><\/li><li>En un estudio de grupo de enfoque, varios pacientes recibieron un diagn\u00f3stico inicial de \u201cc\u00e1ncer\u201d o \u201csarcoma maligno\u201d y notificaron que el pron\u00f3stico previsto era sombr\u00edo, lo que provoc\u00f3 <strong>angustia emocional<\/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-7e33c347 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"7e33c347\" 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\">Los retrasos en el diagn\u00f3stico son un reto 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-2b4b0a9b elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"2b4b0a9b\" 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>Los pacientes experimentaron una larga trayectoria diagn\u00f3stica dentro de la atenci\u00f3n sanitaria primaria y secundaria y fueron transferidos de \u201cde hospital en hospital\u201d, y se frustraron por la falta de continuidad y las opiniones diferentes ofrecidas por los m\u00e9dicos en cada cita hospitalaria.<sup>1<\/sup><\/p><ul><li>Los retrasos relacionados con el paciente pueden deberse <strong>a la incapacidad de reconocer la importancia de los s\u00edntomas<\/strong><sup>1<\/sup><\/li><li>Los retrasos relacionados con los profesionales sanitarios pueden ser consecuencia de:<sup>1<\/sup><ul><li>Entornos de consulta en los que no hay experiencia espec\u00edfica en tumores desmoides<\/li><li>Posibilidad de derivaci\u00f3n incorrecta<\/li><li>Visitas m\u00faltiples a profesionales sanitarios antes de un diagn\u00f3stico correcto<\/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-6a1b5ef5 elementor-widget elementor-widget-the7_button_widget\" data-id=\"6a1b5ef5\" 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=\"\/es\/diagnostico\/\" class=\"box-button elementor-button elementor-size-md\">Para saber m\u00e1s sobre el diagn\u00f3stico de tumor 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-365d1111 e-con-full section e-flex e-con e-parent\" data-id=\"365d1111\" 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-3b88831 e-flex e-con-boxed e-con e-child\" data-id=\"3b88831\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-2f7e248b e-con-full e-flex e-con e-child\" data-id=\"2f7e248b\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-13f38758 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"13f38758\" 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\">Carga de la enfermedad<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-64236c34 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"64236c34\" 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\">Descripci\u00f3n general<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-57ff4728 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"57ff4728\" 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\">Los tumores desmoides se describen como benignos, pero, en algunos casos, est\u00e1n asociados a una enfermedad 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-4824a362 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"4824a362\" 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>Debido a su histolog\u00eda e incapacidad para metastatizar, los tumores desmoides a veces se describen como benignos<sup>2<\/sup><\/li><li>Benigno tambi\u00e9n puede sugerir un curso de tratamiento manejable, que puede no ser cierto para sus pacientes<sup>3<\/sup><\/li><li>Dependiendo de su ubicaci\u00f3n, los tumores desmoides pueden causar dolor debilitante, deformidad e incluso da\u00f1os org\u00e1nicos potencialmente mortales<sup>1<\/sup><\/li><li>Los verdaderos bordes de los tumores desmoides pueden no ser identificables, ya que pueden infiltrarse en el tejido circundante, comprimir m\u00fasculos, nervios y vasos y complicar los intentos de obtener m\u00e1rgenes limpios sin provocar morbilidad<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-7f9649eb e-con-full e-flex e-con e-child\" data-id=\"7f9649eb\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-1d949d57 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"1d949d57\" 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\">Los pacientes pueden experimentar una serie de retos f\u00edsicos, psicol\u00f3gicos y pr\u00e1cticos relacionados con el curso impredecible y la agresividad de los tumores desmoides<sup>7<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6fc8eefc elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"6fc8eefc\" 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>Los pacientes pueden experimentar una calidad de vida comprometida debido a dificultades diagn\u00f3sticas y a la elevada carga cl\u00ednica de los tumores desmoides, que incluyen dolor intenso, deterioro de la funci\u00f3n f\u00edsica y la movilidad, y tasas de recidiva elevadas<sup>1<\/sup><\/li><li>Esto puede limitar sus actividades cotidianas y provocar un deterioro del funcionamiento f\u00edsico, social y emocional<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-35529c9d content-align-center the7-hover-visibility-disabled transform-overlay-yes exceeding-frame-yes elementor-widget elementor-widget-the7-image-widget\" data-id=\"35529c9d\" 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\/01\/Springworks_charts_ES-scaled.png\" loading=\"eager\" data-srcset=\"https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/01\/Springworks_charts_ES-scaled.png 2560w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/01\/Springworks_charts_ES-300x133.png 300w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/01\/Springworks_charts_ES-1024x454.png 1024w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/01\/Springworks_charts_ES-768x341.png 768w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/01\/Springworks_charts_ES-1536x681.png 1536w, https:\/\/www.desmoidtumours.eu\/wp-content\/uploads\/2026\/01\/Springworks_charts_ES-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-4d987415 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"4d987415\" 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>Elaborado a partir de la tabla 1, referencia 1 y tabla 2, referencia 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-21ce3a05 elementor-widget elementor-widget-the7-accordion\" data-id=\"21ce3a05\" 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-5671\" class=\"elementor-tab-title the7-accordion-header deactive-default\" data-tab=\"1\" role=\"tab\" aria-controls=\"elementor-tab-content-5671\">\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=\"\">Descripci\u00f3n del estudio<\/a>\n\t\t\t\t\t<\/h5>\n\t\t\t\t\t<div id=\"elementor-tab-content-5671\" class=\"elementor-tab-content elementor-clearfix deactive-default\" data-tab=\"1\" role=\"tabpanel\" aria-labelledby=\"elementor-tab-title-5671\"><p>Los datos de un estudio de validaci\u00f3n de resultados notificados por el paciente (RNP) de la Memorial Sloan Kettering\/Desmoid Tumor Research Foundation incluyeron a pacientes con tumores desmoides (n = 31, intervalo de edad de 20-68, 77 % mujeres). Los pacientes participaron en entrevistas telef\u00f3nicas cualitativas de 60 minutos para proporcionar sus perspectivas sobre los s\u00edntomas de la enfermedad y el impacto en su calidad de vida. La mayor\u00eda de los pacientes de este estudio eran sintom\u00e1ticos (84 %). El lugar y el tipo de tumor variaron entre los pacientes. Los conceptos tratados durante las entrevistas se utilizaron para desarrollar un borrador de la escala PRO, que se perfeccion\u00f3 a\u00fan m\u00e1s en las entrevistas cognitivas de otros pacientes con tumores desmoides (n = 15).<sup>8<\/sup><\/p>\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 class=\"elementor-element elementor-element-4cd3b47d elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"4cd3b47d\" 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\">Dolor<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b03f0f7 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"b03f0f7\" 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>\n<li>Entre todos los s\u00edntomas experimentados por los pacientes con tumores desmoides, el dolor es el m\u00e1s debilitante y tiene un gran impacto en la calidad de vida<sup>1<\/sup>\n<ul>\n<li>En una encuesta realizada por el grupo franc\u00e9s de defensa del paciente <em>SOS Desmo\u00efde<\/em>,<strong> el dolor estaba presente en el 63 % de los casos<\/strong><sup>1<\/sup><\/li>\n<li>En un estudio de grupo de enfoque, la dependencia de los analg\u00e9sicos era una preocupaci\u00f3n significativa para varios pacientes, y otros observaron que el dolor <strong>no respond\u00eda a los analg\u00e9sicos<\/strong><sup>1<\/sup><\/li>\n<\/ul>\n<\/li>\n<li>De acuerdo con los datos de la cohorte cl\u00ednica-biol\u00f3gica prospectiva de ALTITUDES a nivel nacional (Francia) de casos de fibromatosis de tipo desmoide de diagn\u00f3stico reciente, los dos determinantes del dolor fueron el tama\u00f1o del tumor y la localizaci\u00f3n de la FD. El dolor fue m\u00e1s frecuente en la FD localizada en el cuello y el hombro (OR: 3,05; IC del 95 %: 1,27-7,29) y menos frecuente en la FD localizada en la pared abdominal (OR: 0,52; IC del 95 %: 0,31-0,86) o en el tejido blando intraabdominal o p\u00e9lvico (OR: 0,42; IC del 95 %: 0,19-0,93, p &lt;0,001)<sup>9<\/sup><\/li>\n<li>El dolor fue m\u00e1s frecuente en tumores de m\u00e1s de 50 mm (OR: 1,77; IC del 95 %: 1,13-2,77; P = 0,013)<sup>9<\/sup><\/li>\n<li>La presencia de dolor en el momento del diagn\u00f3stico se asoci\u00f3 a un <strong>peor pron\u00f3stico<\/strong>, independientemente del tratamiento de primera l\u00ednea (cociente de riesgos instant\u00e1neos, 2,0; IC del 95 %, 1,3-2,9; P = 0,006)<sup>1<\/sup>\n<ul>\n<li>La probabilidad de supervivencia sin acontecimientos a los 3 a\u00f1os en ausencia de dolor al inicio fue del 72,2 % (IC del 95 %: 65,1\u201378,1) y del 53,9 % en presencia de dolor al inicio (IC del 95 %: 43,3\u201363,4)<sup>1<\/sup><\/li>\n<\/ul>\n<\/li>\n<li>El dolor tambi\u00e9n se asoci\u00f3 a un <strong>estado funcional m\u00e1s bajo<\/strong> (P = 0,024) y <strong>a deterioro funcional<\/strong> (P = 0,001)<sup>1<\/sup><\/li>\n<\/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-38199be9 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"38199be9\" 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\">Impacto funcional<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-22748a25 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=\"22748a25\" 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-22748a25\">\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=\"Los s\u00edntomas notificados con m\u00e1s frecuencia, en todas las localizaciones del tumor&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_647)\"><g opacity=\"0.3\"><path d=\"M375.552 26.4265C340.302 -8.82333 283.188 -8.82333 247.939 26.4265C234.336 40.0291 226.118 56.8755 223.026 74.4572C222.939 74.8681 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tumor<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>Desfiguraci\u00f3n (81 %)<\/li>\n \t<li>Dolor nervioso (71 %)<\/li>\n \t<li>Reducci\u00f3n de la amplitud de movimiento (68 %)<\/li>\n \t<li>Dolor muscular (65 %)<\/li>\n \t<li>Fatiga (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=\"Impacto notificado con mayor frecuencia en la vida de los pacientes&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 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stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M191.331 187.428C201.916 187.428 220.989 194.254 226.204 196.888C231.42 199.495 234.795 201.745 238.911 207.345C242.388 212.074 248.218 219.745 252.181 228.131C255.811 235.826 249.547 244.468 241.11 243.445L202.657 239.355\" 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=\"Impacto notificado con mayor frecuencia en la vida de los pacientes&lt;sup&gt;1,8&lt;\/sup&gt;\">\t\t\t\t\t\t\t\t\t\t\t\tImpacto notificado con mayor frecuencia en la vida de los pacientes<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>Miedo (84 %)<\/li>\n \t<li>Trastornos del sue\u00f1o (77 %)<\/li>\n \t<li>Preocupaci\u00f3n por la falta de conocimiento entre los profesionales sanitarios (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-39f4c929 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"39f4c929\" 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 desfiguraci\u00f3n<\/strong> (alteraci\u00f3n con impacto funcional) es frecuente y a menudo es el resultado de una intervenci\u00f3n quir\u00fargica.<sup>10<\/sup><\/p><p>En un estudio, todos los pacientes con tumores desmoides de las extremidades (n = 21) experimentaron deterioro funcional en las articulaciones adyacentes despu\u00e9s de la cirug\u00eda.<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-77babe19 e-con-full e-flex e-con e-child\" data-id=\"77babe19\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-401015e8 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"401015e8\" 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\">Impacto emocional y social<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3267683e elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"3267683e\" 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\">Los tumores desmoides pueden tener un impacto importante en muchos aspectos de la vida de los pacientes, incluidas las interacciones sociales, la capacidad para trabajar y las relaciones<sup>7<\/sup> <\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-639739f9 no-link bullet-custom 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236.455 130.257 236.455 143\" stroke=\"#005EA7\" stroke-width=\"7.58\"><\/path><path d=\"M113.182 63C118.273 74.6814 107 80.3451 107 92.0265C107 103.708 123 104.77 123 116.097C123 127.425 108.455 130.257 108.455 143\" stroke=\"#005EA7\" stroke-width=\"7.58\"><\/path><path d=\"M137.182 63C142.273 74.6814 131 80.3451 131 92.0265C131 103.708 147 104.77 147 116.097C147 127.425 132.455 130.257 132.455 143\" stroke=\"#005EA7\" stroke-width=\"7.58\"><\/path><path d=\"M265.182 63C270.273 74.6814 259 80.3451 259 92.0265C259 103.708 275 104.77 275 116.097C275 127.425 260.455 130.257 260.455 143\" stroke=\"#005EA7\" stroke-width=\"7.58\"><\/path><path d=\"M182.5 125.5C187.5 121.5 194.5 121 198 126.5\" stroke=\"#005EA7\" stroke-width=\"7.58\"><\/path><\/g><defs><clipPath id=\"clip0_377_231\"><rect width=\"400\" 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=\"Emocional\">\t\t\t\t\t\t\t\t\t\t\t\tEmocional\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>Baja autoestima, cambios en el estilo de vida, problemas de planificaci\u00f3n familiar, incertidumbre<sup>11<\/sup><\/li>\n \t<li>Se notific\u00f3 que la ansiedad, la depresi\u00f3n y el mal bienestar eran m\u00e1s graves en pacientes con tumores desmoides de la pared abdominal que en pacientes 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 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307.149V212.9V268.998C109.665 272.806 112.748 275.905 116.538 275.905C120.327 275.905 123.41 272.806 123.41 268.998V213.438C123.41 193.405 114.846 177.115 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 307.149V269.019Z\" fill=\"white\"><\/path><path d=\"M109.665 307.149V212.9V268.998C109.665 272.806 112.748 275.905 116.538 275.905C120.327 275.905 123.41 272.806 123.41 268.998V213.438C123.41 193.405 114.846 177.115 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=\"Vida social\">\t\t\t\t\t\t\t\t\t\t\t\tVida social\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>Interrupciones del trabajo, impacto en la vida familiar y social, crisis financiera<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-726efd98 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"726efd98\" 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\">Calidad de vida relacionada con la salud (CVRS)<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-44d0ffb8 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"44d0ffb8\" 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\">La carga sustancial de los s\u00edntomas, la naturaleza cr\u00f3nica y las bajas tasas de mortalidad hacen que la evaluaci\u00f3n de la CVRS sea muy relevante en pacientes con tumores desmoides<sup>7<\/sup><\/h4>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2f2a4d90 elementor-widget-tablet__width-inherit bullet-custom elementor-widget elementor-widget-text-editor\" data-id=\"2f2a4d90\" 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>La CVRS proporciona informaci\u00f3n adicional importante junto con criterios de valoraci\u00f3n objetivos para evaluar el beneficio cl\u00ednico del tratamiento<sup>7<\/sup><\/li><li>En los \u00faltimos a\u00f1os, se han desarrollado dos herramientas de CVRS espec\u00edficas para desmoides para medir los s\u00edntomas y el impacto de la enfermedad de los tumores desmoides<sup>7<\/sup><ul><li>La herramienta <strong>GODDESS<\/strong> validada se desarroll\u00f3 para tumores desmoides tanto espor\u00e1dicos como asociados a la PAF<sup>.7<\/sup><\/li><li>El <strong>cuestionario DTF-QoL<\/strong> se desarroll\u00f3 para tumores desmoides espor\u00e1dicos y est\u00e1 dise\u00f1ado para su uso en combinaci\u00f3n con el EORTC QLQ\u2010C30<sup>7<\/sup><\/li><\/ul><\/li><li>Ambos cuestionarios desmoides espec\u00edficos del tumor se pueden utilizar en futuros estudios cl\u00ednicos y atenci\u00f3n cl\u00ednica<sup>7<\/sup><\/li><li>El uso de estas herramientas de CdVRS espec\u00edficas para tumores desmoides puede ayudar a identificar a los pacientes con riesgo de malos resultados y proporcionar una atenci\u00f3n m\u00e1s personalizada<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-5df68aa3 elementor-widget elementor-widget-the7_button_widget\" data-id=\"5df68aa3\" 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\">M\u00e1s informaci\u00f3n sobre GODDESS y 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-582eb72e e-con-full section e-flex e-con e-parent\" data-id=\"582eb72e\" data-element_type=\"container\" id=\"unmet-need\">\n\t\t<div class=\"elementor-element elementor-element-5088c4c2 e-flex e-con-boxed e-con e-child\" data-id=\"5088c4c2\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-6ae65c7d e-con-full e-flex e-con e-child\" data-id=\"6ae65c7d\" data-element_type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-539f4eff e-con-full e-flex e-con e-child\" data-id=\"539f4eff\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-30851b31 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"30851b31\" 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\">Necesidad no cubierta<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ad35dfc elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"ad35dfc\" 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\">Los pacientes necesitan controlar la enfermedad y mejorar los s\u00edntomas<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-6435e4d2 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"6435e4d2\" 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>Los objetivos del tratamiento de los tumores desmoides incluyen:<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-76f6677b e-con-full e-flex e-con e-child\" data-id=\"76f6677b\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-f0576d 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=\"f0576d\" 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-f0576d\">\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=\"Control tumoral a largo plazo sin comprometer la estructura ni la funci\u00f3n\">\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_624)\"><path opacity=\"0.3\" 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187.428C180.746 187.428 161.673 194.254 156.457 196.888C151.241 199.495 147.867 201.745 143.75 207.345C140.273 212.074 134.444 219.745 130.481 228.131C126.85 235.826 133.114 244.468 141.551 243.445L185.936 238.715\" fill=\"white\"><\/path><path d=\"M191.331 187.428C201.916 187.428 220.989 194.254 226.204 196.888C231.42 199.495 234.795 201.745 238.911 207.345C242.388 212.074 248.218 219.745 252.181 228.131C255.811 235.826 249.547 244.468 241.11 243.445L202.657 239.355\" fill=\"white\"><\/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\" fill=\"white\"><\/path><path d=\"M191.331 187.428C180.746 187.428 161.673 194.254 156.457 196.888C151.241 199.495 147.867 201.745 143.75 207.345C140.273 212.074 134.444 219.745 130.481 228.131C126.85 235.826 133.114 244.468 141.551 243.445L185.936 238.715\" 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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=\"Mejora en la calidad de vida general\">\t\t\t\t\t\t\t\t\t\t\t\tMejora en la calidad de vida general\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-db0860b elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"db0860b\" 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>Es importante que los pacientes sean evaluados por un equipo multidisciplinar con experiencia y conocimientos especializados en el sarcoma para ayudar a optimizar el tratamiento de los pacientes y alcanzar los objetivos del tratamiento.<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-397d0601 elementor-widget elementor-widget-the7_button_widget\" data-id=\"397d0601\" 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=\"\/es\/diagnostico\/\" class=\"box-button elementor-button elementor-size-md\">Para saber m\u00e1s sobre el diagn\u00f3stico de tumor 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-13486aab elementor-widget-tablet__width-inherit elementor-widget elementor-widget-text-editor\" data-id=\"13486aab\" 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, cuestionario espec\u00edfico de CdVRS para fibromatosis de tipo desmoide; EORTC QLQ-C30, Cuestionario de calidad de vida b\u00e1sico de 30 \u00edtems de la Organizaci\u00f3n Europea para la Investigaci\u00f3n y el Tratamiento del C\u00e1ncer; GODDESS, escala de s\u00edntomas\/impacto en fibromatosis desmoide Gounder\/DTRF; CdVRS, calidad de vida relacionada con la salud; RPP, resultado percibido por el paciente.<\/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-7eb35fa3 e-con-full e-flex e-con e-parent\" data-id=\"7eb35fa3\" data-element_type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-59fcac72 e-flex e-con-boxed e-con e-child\" data-id=\"59fcac72\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-16e80a2f e-con-full e-flex e-con e-child\" data-id=\"16e80a2f\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-61157397 elementor-widget elementor-widget-the7-accordion\" data-id=\"61157397\" 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-1621\" class=\"elementor-tab-title the7-accordion-header deactive-default\" data-tab=\"1\" role=\"tab\" aria-controls=\"elementor-tab-content-1621\">\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=\"\">Referencias<\/a>\n\t\t\t\t\t<\/h5>\n\t\t\t\t\t<div id=\"elementor-tab-content-1621\" class=\"elementor-tab-content elementor-clearfix deactive-default\" data-tab=\"1\" role=\"tabpanel\" aria-labelledby=\"elementor-tab-title-1621\"><ol><li>Bektas M et al. Desmoid tumors: a comprehensive review. <em>Adv Ther<\/em>. 2023 40(9):3697-3722. doi: 10.1007\/s12325-023-02592-0.<\/li><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. doi: 10.3390\/cancers3033143.<\/li><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. doi: 10.1007\/s00520-018-4386-8.<\/li><li>Constantinidou A et al. Clinical presentation of desmoid tumors. En: Litchman C, ed. Desmoid Tumors. Springer; 2012:cap. 2. Consultado el 9 de abril de 2024. https:\/\/www.researchgate.net\/publication\/226455135. doi: 10.1007\/978-94-007-1685-8_2.<\/li><li>Bonvalot S et al. The treatment of desmoid tumors: a stepwise clinical approach. <em>Ann Oncol<\/em>. 2012;23(suppl 10):x158-x166. doi: 10.1093\/annonc\/mds298.<\/li><li>Skubitz KM. Biology and treatment of aggressive fibromatosis or desmoid tumor. <em>Mayo Clin Proc<\/em>. 2017;92(6):947-964. doi: 10.1016\/j.mayocp.2017.02.012.<\/li><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>. doi: 10.1001\/jamaoncol.2024.1805.<\/li><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. doi: 10.1002\/cncr.32555.<\/li><li>Penel N et al. Pain in desmoid-type fibromatosis: prevalence, determinants and prognosis value. Int J Cancer. 2023;153(2):407-416. doi: 10.1002\/ijc.34493.<\/li><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. doi: 10.3390\/cancers4010088.<\/li><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. doi: 10.1007\/s11136-018-1931-3.<\/li><li>Ingley KM et al. High prevalence of persistent emotional distress in desmoid tumor. <em>Psychooncology<\/em>. 2020;29(2):311-320. doi: 10.1002\/pon.5250.<\/li><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. doi: 10.1080\/14737167.2023.2203915.<\/li><\/ol><\/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>Diagn\u00f3stico tard\u00edo\/diagn\u00f3stico err\u00f3neo Carga de la enfermedad Necesidad no cubierta Experiencia del paciente Diagn\u00f3stico tard\u00edo\/diagn\u00f3stico err\u00f3neo La concienciaci\u00f3n sobre el tumor desmoide es importante para un diagn\u00f3stico r\u00e1pido y un tratamiento oportuno y adecuado de la enfermedad1 Los pacientes con tumores desmoides se enfrentan a muchos retos, incluidos el diagn\u00f3stico tard\u00edo o el diagn\u00f3stico err\u00f3neo&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-21881","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>Tumores desmoides: Experiencia del paciente | SpringWorks Therapeutics<\/title>\n<meta name=\"description\" content=\"Comprender la variedad de retos que experimentan los pacientes con tumores desmoides, incluidos el diagn\u00f3stico tard\u00edo, el diagn\u00f3stico err\u00f3neo, la carga de la enfermedad y sus necesidades no cubiertas.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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