{"id":11749,"date":"2023-01-17T00:23:00","date_gmt":"2023-01-17T00:23:00","guid":{"rendered":"https:\/\/dupmecp2.eu\/untersuchung-der-belastung-von-pflegekraeften-bei-mecp2-genduplikation-syndrom\/"},"modified":"2023-01-18T10:18:19","modified_gmt":"2023-01-18T10:18:19","slug":"untersuchung-der-belastung-von-pflegekraeften-bei-mecp2-genduplikation-syndrom","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/untersuchung-der-belastung-von-pflegekraeften-bei-mecp2-genduplikation-syndrom\/","title":{"rendered":"Untersuchung der Belastung von Pflegekr\u00e4ften bei MECP2 Genduplikation Syndrom"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>El S\u00edndrome de Captaci\u00f3n de MECP2 (SMD) es un trastorno neurog\u00e9nico grave que provoca trastornos tanto f\u00edsicos como motores. Los ni\u00f1os con este s\u00edndrome no pueden vivir por s\u00ed mismos y se ven afectados en gran medida por los m\u00e9dicos y los padres.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Por \u00faltimo, el cuidado de los ni\u00f1os con trastornos de conducta puede ser un gran reto, ya que deben permanecer estables y no recibir ning\u00fan tipo de ayuda.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Si bien es cierto que la situaci\u00f3n laboral de los profesionales sanitarios es muy importante, a menudo no se considera un par\u00e1metro para mejorar la salud de las personas con SMD. Por otra parte, la participaci\u00f3n de los profesionales sanitarios no s\u00f3lo puede mejorar el estado de salud de los pacientes afectados, sino tambi\u00e9n la calidad de vida de sus familias, lo cual es beneficioso para toda la sociedad.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>El Dr. Pehlivan y su equipo investigaron por primera vez la evaluaci\u00f3n de las capacidades de los pacientes con el s\u00edndrome de adiposidad MECP2. En primer lugar, elaboraron una escala de evaluaci\u00f3n para determinar las consecuencias de los problemas m\u00e1s comunes a los que se enfrentan los pacientes. Esta escala de valoraci\u00f3n se utiliz\u00f3 para determinar la correlaci\u00f3n entre los valores MDS y una mayor valoraci\u00f3n. Los evaluadores identificaron varios factores que pueden contribuir a la p\u00e9rdida de peso y evaluaron sus efectos en la escala de p\u00e9rdida de peso. Entre los factores analizados se encontraban el bienestar econ\u00f3mico, el acceso a los expertos, la atenci\u00f3n personalizada, la mejora de la calidad de vida, el apoyo a las personas mayores y las necesidades en el entorno familiar y social.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>En el estudio, que se llev\u00f3 a cabo entre septiembre y noviembre de 2020, participaron 101 m\u00e9dicos de todo el mundo. La edad de los pacientes con SMD oscilaba entre 0 y 51 a\u00f1os.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>El estudio aporta lo siguiente:<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>- El tratamiento de los pacientes con SMD provoca en ellos mismos angustia profunda, estr\u00e9s emocional y depresi\u00f3n. Estos sentimientos se traducen en un alto nivel de estr\u00e9s.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>- Se observ\u00f3 que los pacientes con SMD presentaban un menor grado de prevalencia de la epilepsia. Los efectos secundarios, las infecciones, la movilidad, la edad de los pacientes con SMD o de los profesionales sanitarios, as\u00ed como la duraci\u00f3n de la terapia, no influyeron de forma significativa en la estimaci\u00f3n. Aunque los cient\u00edficos intentaron identificar s\u00edntomas o causas espec\u00edficas, no se puede concluir que la combinaci\u00f3n de todos los factores influya en la evaluaci\u00f3n de los pacientes.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>- Aunque existen diferencias significativas entre los sistemas sanitarios, la distribuci\u00f3n geogr\u00e1fica de los pacientes con SMD y de sus acompa\u00f1antes no influy\u00f3 en el nivel de satisfacci\u00f3n.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><em>Evaluaci\u00f3n de la carga que supone para los cuidadores el s\u00edndrome de duplicaci\u00f3n MECP2 D. Pehlivan et al. Pediatr. Neurol. 2022 Aug;133:1-8 (10.1016\/j.pediatrneurol.2022.05.008)<\/em><\/p>\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>ZUSAMMENFASSUNG DES ARTIKELS:<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Hintergrund:<\/strong> El S\u00edndrome de Duplicaci\u00f3n MECP2 (SDM) es un trastorno neurog\u00e9nico muy frecuente que se caracteriza por trastornos neurol\u00f3gicos graves, epilepsia refractaria, infecciones cr\u00f3nicas y problemas gastrointestinales funcionales. Aufgrund der schwerwiegenden klinischen Probleme und lebenslangen Behinderungen von Kindern mit dieser St\u00f6rung sind wir davon ausgegangen, dass die Belastung f\u00fcr die Eltern\/Betreuer dieser Kinder erheblich ist. Sin embargo, no existen informes sobre los efectos en los cuidadores de personas con SMD.<\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Methoden:<\/strong> Hemos desarrollado y validado una escala de evaluaci\u00f3n para analizar las necesidades con las que se enfrentan los cuidadores de ni\u00f1os y adolescentes con SMD y para determinar los factores que contribuyen a la evaluaci\u00f3n del cuidador. Hemos creado un registro de pacientes conforme a la Ley de Portabilidad y Responsabilidad del Seguro M\u00e9dico (Health Insurance Portability and Accountability Act) para familias con SMD y utilizamos este registro para evaluar a los padres.<\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Financiar:<\/strong> De las 237 preguntas de la muestra, 101 eran relevantes para el estudio. Wir stellten fest, dass ein erh\u00f6htes Ma\u00df an selbst wahrgenommener Angst, Depression und emotionaler Ersch\u00f6pfung bei den pflegenden Angeh\u00f6rigen mit h\u00f6heren Belastungswerten korrelierte. La epilepsia fue el \u00fanico s\u00edntoma cl\u00ednico que caus\u00f3 un mayor da\u00f1o al personal de enfermer\u00eda de las personas con SMD. Dar\u00fcber hinaus wurde eine h\u00f6here Belastung bei hispanischen Pflegern festgestellt. La duraci\u00f3n de los cuidados se correlacion\u00f3 negativamente con la gravedad de los da\u00f1os.<\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Ergebnisse:<\/strong> Este es el primer estudio que examina la salud de las personas con SMD e identifica una serie de factores que contribuyen a mejorarla. Umgang mit diesen Faktoren hat das Potenzial, die Gesundheit von Menschen mit MDS zu verbessern und zum Wohlergehen der Pflegenden beizutragen.<\/p>\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-fill\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/www.pedneur.com\/article\/S0887-8994(22)00089-3\/fulltext\" style=\"border-radius:10px;background-color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\">B\u00fasqueda de publicaciones<\/a><\/div>\n<\/div>\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>","protected":false},"excerpt":{"rendered":"<p>Das MECP2 Genduplikation Syndrom (MDS) ist eine fortschreitende neurogenetische Erkrankung, die sowohl zu geistigen als auch zu motorischen Behinderungen f\u00fchrt. Kinder mit diesem Syndrom k\u00f6nnen nicht selbstst\u00e4ndig leben und sind [&hellip;]<\/p>","protected":false},"author":1,"featured_media":11716,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[58],"tags":[],"class_list":["post-11749","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-publikationen"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Untersuchung der Belastung von Pflegekr\u00e4ften bei MECP2 Genduplikation Syndrom - DupMECP2<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/dupmecp2.eu\/es\/untersuchung-der-belastung-von-pflegekraeften-bei-mecp2-genduplikation-syndrom\/?lang=de\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Untersuchung der Belastung von Pflegekr\u00e4ften bei MECP2 Genduplikation Syndrom - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Das MECP2 Genduplikation Syndrom (MDS) ist eine fortschreitende neurogenetische Erkrankung, die sowohl zu geistigen als auch zu motorischen Behinderungen f\u00fchrt. 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