{"id":48005,"date":"2025-11-07T10:42:12","date_gmt":"2025-11-07T09:42:12","guid":{"rendered":"https:\/\/sjd.es\/pacientes-profesionales-e-investigadores-defienden-una-atencion-multidisciplinar-y-un-cuidado-integral-para-las-personas-con-ela\/"},"modified":"2026-02-10T16:17:56","modified_gmt":"2026-02-10T15:17:56","slug":"pacients-professionals-i-investigadors-defensen-una-atencio-multidisciplinaria-i-una-cura-integral-per-a-les-persones-amb-ela","status":"publish","type":"post","link":"https:\/\/sjd.es\/ca\/pacients-professionals-i-investigadors-defensen-una-atencio-multidisciplinaria-i-una-cura-integral-per-a-les-persones-amb-ela\/","title":{"rendered":"Pacients, professionals i investigadors defensen una atenci\u00f3 multidisciplin\u00e0ria i una cura integral per a les persones amb ELA"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">L&#8217;Esclerosi Lateral Amiotr\u00f2fica (ELA) continua sent una malaltia sense cura que afecta unes 4.000 persones a Espanya. M\u00e9s enll\u00e0 dels avan\u00e7os cient\u00edfics, els professionals insisteixen que el veritable repte passa per oferir una atenci\u00f3 coordinada, integral i centrada en la persona.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Aquestes reflexions han estat molt presents avui en la jornada \u201c<strong>Viure amb ELA. M\u00e9s enll\u00e0 del diagn\u00f2stic: veus i cures<\/strong>\u201d, organitzada per l&#8217;<a href=\"https:\/\/www.comillas.edu\/euef\/\" target=\"_blank\" rel=\"noreferrer noopener\">Escuela Universitaria de Enfermer\u00eda y Fisioterapia San Juan de Dios \u2013 Comillas (EUEF)<\/a> i la <a href=\"https:\/\/www.fundacionsjd.org\/es\/\" target=\"_blank\" rel=\"noreferrer noopener\">Fundaci\u00f3n San Juan de Dios<\/a>, que ha reunit professionals sanitaris, investigadors, pacients i familiars.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El periodista i escriptor Mart\u00edn Caparr\u00f3s ha obert la trobada amb una pon\u00e8ncia honesta sobre la seva experi\u00e8ncia personal. Ha parlat del valor de compartir entre iguals:<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<h5 class=\"wp-block-heading\">\u201cLa relaci\u00f3 entre els qui comparteixen la malaltia \u00e9s terap\u00e8utica; la que existeix entre metge i pacient sempre \u00e9s jer\u00e0rquica: un en sap i l&#8217;altre no, un pateix i l&#8217;altre no\u201d.<\/h5>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">Tamb\u00e9 ha reconegut que el seu objectiu ara \u00e9s fer que el present duri el m\u00e0xim possible i ha llan\u00e7at una reflexi\u00f3 final: \u201cNo entenc com, quan era una persona sana, no era brutalment feli\u00e7\u201d.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter size-large\"><a data-lg-transition=\"disabled\" href=\"http:\/\/sjd.es\/wp-content\/uploads\/2025\/11\/Foto-2-1-scaled-1.jpg\"><img decoding=\"async\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"http:\/\/sjd.es\/wp-content\/uploads\/2025\/11\/Foto-2-1-1177x800.jpg\" alt=\"\" class=\"wp-image-44987 lazyload\"><noscript><img decoding=\"async\" src=\"http:\/\/sjd.es\/wp-content\/uploads\/2025\/11\/Foto-2-1-1177x800.jpg\" alt=\"\" class=\"wp-image-44987\"><\/noscript><\/a><figcaption class=\"wp-element-caption\">Mart\u00edn Caparr\u00f3s durant un moment de la seva intervenci\u00f3<\/figcaption><\/figure>\n\n\n\n<div style=\"height:63px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h5 class=\"wp-block-heading has-primario-color has-text-color has-link-color wp-elements-1\">La dimensi\u00f3 espiritual i el sentit de la vida<\/h5>\n\n\n\n<p class=\"wp-block-paragraph\">Des de l&#8217;EUEF, els professors i investigadors han aportat una mirada innovadora i centrada en la cura integral.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La investigadora Mar Zulueta ha presentat l&#8217;estudi \u201cSentit en la vida en persones amb Esclerosi Lateral Amiotr\u00f2fica: de la qualitat de vida a la percepci\u00f3 del cuidat infermer\u201d, que es realitza des de la universitat i en col\u00b7laboraci\u00f3 amb la Unitat d&#8217;ELA de l&#8217;Hospital Universitario La Paz-Carlos III.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Aquest estudi, en el qual han participat m\u00e9s de 200 persones amb ELA de tota Espanya, aporta evid\u00e8ncia cient\u00edfica sobre la import\u00e0ncia dels cuidats infermers centrats en la dimensi\u00f3 espiritual i el sentit de vida, amb l&#8217;objectiu de millorar l&#8217;atenci\u00f3 sanit\u00e0ria i la qualitat de vida dels pacients i les seves fam\u00edlies.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<h5 class=\"wp-block-heading\">\u201cL&#8217;impacte emocional i el sentit vital dels pacients s\u00f3n \u00e0rees que requereixen m\u00e9s atenci\u00f3 tant en la pr\u00e0ctica cl\u00ednica com en la recerca\u201d, ha explicat Mar Zulueta.<\/h5>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">Durant la seva intervenci\u00f3 ha recordat que, m\u00e9s enll\u00e0 del coneixement cient\u00edfic, l&#8217;atenci\u00f3 a l&#8217;ELA passa tamb\u00e9 per acompanyar, escoltar i guiar des d&#8217;una compressi\u00f3 integral del pacient.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h5 class=\"wp-block-heading has-primario-color has-text-color has-link-color wp-elements-2\">Biomarcadors ecogr\u00e0fics i fisioter\u00e0pia respirat\u00f2ria al servei de l&#8217;ELA<\/h5>\n\n\n\n<p class=\"wp-block-paragraph\">El professor Jos\u00e9 R\u00edos, tamb\u00e9 de l&#8217;EUEF, ha presentat els avan\u00e7os en l&#8217;\u00fas d&#8217;ecografia muscular per a estudiar l&#8217;evoluci\u00f3 de la malaltia, assenyalant que la intel\u00b7lig\u00e8ncia artificial podria oferir en el futur eines \u00fatils per a analitzar grans volums de dades i afinar la detecci\u00f3 de biomarcadors.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Seguint aquesta l\u00ednia, la professora de l&#8217;EUEF Sonia de Marco ha ressaltat el paper de la fisioter\u00e0pia respirat\u00f2ria en el manteniment de l&#8217;autonomia i la qualitat de vida dels pacients.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<h5 class=\"wp-block-heading\">\u201cLes complicacions respirat\u00f2ries s\u00f3n la principal causa de mortalitat en l&#8217;ELA, per\u00f2 intervenir a temps permet conservar funcions i millorar la qualitat de vida\u201d, ha afirmat.<\/h5>\n<\/blockquote>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h5 class=\"wp-block-heading has-primario-color has-text-color has-link-color wp-elements-3\">Una atenci\u00f3 multidisciplin\u00e0ria, coordinada i equitativa<\/h5>\n\n\n\n<p class=\"wp-block-paragraph\">Entre les veus professionals, la infermera gestora de casos de la Unitat d&#8217;ELA de l&#8217;<strong>Hospital Universitario La Paz\u2013Carlos III<\/strong>, Yolanda Mor\u00e1n, ha posat el focus en la necessitat de consolidar un model d&#8217;atenci\u00f3 multidisciplin\u00e0ria que integri a tots els professionals implicats. \u201cEl treball en equip \u00e9s essencial. L&#8217;ELA requereix una atenci\u00f3 multidisciplin\u00e0ria i coordinada en la qual cada professional aporti el seu coneixement, per\u00f2 tamb\u00e9 una visi\u00f3 compartida del pacient\u201d, ha assenyalat.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En aquest sentit, Yolanda Mor\u00e1n ha reivindicat la figura de la infermera gestora de casos com a element clau per a \u201cfacilitar el recorregut del pacient des del diagn\u00f2stic\u201d i servir d&#8217;enlla\u00e7 entre l&#8217;Atenci\u00f3 Prim\u00e0ria especialitzada i l&#8217;hospital\u00e0ria.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A m\u00e9s, ha subratllat la necessitat de refor\u00e7ar la coordinaci\u00f3 sociosanit\u00e0ria i de garantir que tots els pacients, independentment del seu lloc de resid\u00e8ncia, tinguin acc\u00e9s a una atenci\u00f3 integral i de qualitat.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h5 class=\"wp-block-heading has-primario-color has-text-color has-link-color wp-elements-4\">Avan\u00e7os cl\u00ednics i recerca col\u00b7laborativa<\/h5>\n\n\n\n<p class=\"wp-block-paragraph\">El doctor Javier Masc\u00edas, coordinador de la Unitat d&#8217;ELA de l&#8217;Hospital Universitario La Paz\u2013Carlos III, ha aprofundit en els aspectes cl\u00ednics i en els reptes del diagn\u00f2stic i l&#8217;evoluci\u00f3 de la malaltia, recordant que es tracta d&#8217;una patologia de r\u00e0pida progressi\u00f3 que encara manca de cura.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per part seva, Raquel Barajas, responsable de recerca de la <a href=\"https:\/\/www.ffluzon.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Fundaci\u00f3n Francisco Luz\u00f3n<\/a>, ha repassat els assajos cl\u00ednics en marxa i ha subratllat la import\u00e0ncia de la medicina de precisi\u00f3 i del Registre Nacional d&#8217;ELA com a eina per a avan\u00e7ar en el coneixement de la malaltia i en la col\u00b7laboraci\u00f3 entre equips.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per a finalitzar la jornada, s&#8217;ha celebrat una taula de di\u00e0leg amb pacients i familiars. En aquest espai s&#8217;han compartit experi\u00e8ncies personals i hist\u00f2ries de vida que mostren com cada persona afronta la malaltia des de la seva pr\u00f2pia realitat. Els testimoniatges reflecteixen resili\u00e8ncia, aprenentatge i la import\u00e0ncia de l&#8217;acompanyament per part dels professionals i de l&#8217;entorn m\u00e9s pr\u00f2xim. La taula posa en relleu el valor d&#8217;escoltar als qui viuen l&#8217;ELA en primera persona i d&#8217;integrar les seves veus en la pr\u00e0ctica assistencial i en la recerca.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>L&#8217;Esclerosi Lateral Amiotr\u00f2fica (ELA) continua sent una malaltia sense cura que afecta unes 4.000 persones a Espanya. M\u00e9s enll\u00e0 dels avan\u00e7os cient\u00edfics, els professionals insisteixen que el veritable repte passa [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":48176,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"_FSMCFIC_featured_image_caption":"","_FSMCFIC_featured_image_nocaption":"","_FSMCFIC_featured_image_hide":"","footnotes":""},"categories":[408,399,387],"class_list":["post-48005","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-jornades","category-recerca","category-centres-ca"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pacients, professionals i investigadors defensen una atenci\u00f3 multidisciplin\u00e0ria i una cura integral per a les persones amb ELA - San Juan de Dios Jornada Vivir con ELA. 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