{"id":15863,"date":"2023-01-17T00:23:00","date_gmt":"2023-01-17T00:23:00","guid":{"rendered":"https:\/\/dupmecp2.eu\/evaluacion-de-la-carga-que-supone-para-los-cuidadores-el-sindrome-de-duplicacion-mecp2\/"},"modified":"2023-04-10T19:47:33","modified_gmt":"2023-04-10T19:47:33","slug":"%ce%b1%ce%be%ce%b9%ce%bf%ce%bb%cf%8c%ce%b3%ce%b7%cf%83%ce%b7-%cf%84%ce%b7%cf%82-%ce%b5%cf%80%ce%b9%ce%b2%ce%ac%cf%81%cf%85%ce%bd%cf%83%ce%b7%cf%82-%cf%84%cf%89%ce%bd-%cf%86%cf%81%ce%bf%ce%bd%cf%84","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/el\/%ce%b1%ce%be%ce%b9%ce%bf%ce%bb%cf%8c%ce%b3%ce%b7%cf%83%ce%b7-%cf%84%ce%b7%cf%82-%ce%b5%cf%80%ce%b9%ce%b2%ce%ac%cf%81%cf%85%ce%bd%cf%83%ce%b7%cf%82-%cf%84%cf%89%ce%bd-%cf%86%cf%81%ce%bf%ce%bd%cf%84\/","title":{"rendered":"Evaluaci\u00f3n de la carga que supone para los cuidadores el s\u00edndrome de duplicaci\u00f3n MECP2"},"content":{"rendered":"

\u03a4\u03bf \u03c3\u03cd\u03bd\u03b4\u03c1\u03bf\u03bc\u03bf \u03b4\u03b9\u03c0\u03bb\u03b1\u03c3\u03b9\u03b1\u03c3\u03bc\u03bf\u03cd \u03c4\u03bf\u03c5 MECP2 (MDS) \u03b5\u03af\u03bd\u03b1\u03b9 \u03ad\u03bd\u03b1 \u03bd\u03b5\u03c5\u03c1\u03bf\u03b3\u03b5\u03bd\u03b5\u03c4\u03b9\u03ba\u03cc \u03c4\u03c1\u03b1\u03cd\u03bc\u03b1 \u03c0\u03bf\u03c5 \u03b5\u03be\u03b5\u03bb\u03af\u03c3\u03c3\u03b5\u03c4\u03b1\u03b9 \u03bc\u03b5 \u03b4\u03b9\u03b1\u03bd\u03bf\u03b7\u03c4\u03b9\u03ba\u03ae \u03ba\u03b1\u03b9 \u03ba\u03b9\u03bd\u03b7\u03c4\u03b9\u03ba\u03ae \u03b1\u03bd\u03b1\u03c0\u03b7\u03c1\u03af\u03b1. \u03a4\u03b1 \u03c0\u03b1\u03b9\u03b4\u03b9\u03ac \u03bc\u03b5 \u03b1\u03c5\u03c4\u03cc \u03c4\u03bf \u03c3\u03cd\u03bd\u03b4\u03c1\u03bf\u03bc\u03bf \u03b4\u03b5\u03bd \u03bc\u03c0\u03bf\u03c1\u03bf\u03cd\u03bd \u03bd\u03b1 \u03b6\u03ae\u03c3\u03bf\u03c5\u03bd \u03b1\u03bd\u03b5\u03be\u03ac\u03c1\u03c4\u03b7\u03c4\u03b1 \u03ba\u03b1\u03b9 \u03b5\u03be\u03b1\u03c1\u03c4\u03ce\u03bd\u03c4\u03b1\u03b9 \u03c3\u03b5 \u03bc\u03b5\u03b3\u03ac\u03bb\u03bf \u03b2\u03b1\u03b8\u03bc\u03cc \u03b1\u03c0\u03cc \u03c4\u03bf\u03c5\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2 \u03c4\u03bf\u03c5\u03c2 \u03ba\u03b1\u03b9, \u03b9\u03b4\u03af\u03c9\u03c2, \u03b1\u03c0\u03cc \u03c4\u03bf\u03c5\u03c2 \u03c0\u03b1\u03c4\u03ad\u03c1\u03b5\u03c2 \u03c4\u03bf\u03c5\u03c2.<\/strong><\/p>\n\n

Para estos \u00faltimos, cuidar de un ni\u00f1o con discapacidades progresivas puede ser todo un reto debido tanto a la constante adaptaci\u00f3n de los cuidados como a la falta de apoyo adecuado.<\/strong><\/p>\n\n

Aunque es muy importante, el bienestar de los cuidadores no suele considerarse un par\u00e1metro para mejorar la salud de las personas con MDS. Adem\u00e1s, abordar la carga de los cuidadores no s\u00f3lo podr\u00eda mejorarar la salud de esta poblaci\u00f3n vulnerable de pacientes, sino que tambi\u00e9n mejorar\u00eda la calidad de vida de sus familias, lo que supondr\u00eda un beneficio para toda la sociedad.<\/strong><\/p>\n\n

\u039f Dr. Pehlivan \u03ba\u03b1\u03b9 \u03b7 \u03bf\u03bc\u03ac\u03b4\u03b1 \u03c4\u03bf\u03c5 \u03b5\u03be\u03ad\u03c4\u03b1\u03c3\u03b1\u03bd \u03b3\u03b9\u03b1 \u03c0\u03c1\u03ce\u03c4\u03b7 \u03c6\u03bf\u03c1\u03ac \u03c4\u03b7\u03bd \u03c5\u03b3\u03b5\u03af\u03b1 \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03c4\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 \u03c3\u03cd\u03bd\u03b4\u03c1\u03bf\u03bc\u03bf \u03b4\u03b9\u03c0\u03bb\u03b1\u03c3\u03b9\u03b1\u03c3\u03bc\u03bf\u03cd MECP2. En primer lugar, establecieron una escala de carga para evaluar los efectos de los retos constantes a los que se enfrentan los cuidadores. Esta escala de carga se utiliz\u00f3 para identificar la correlaci\u00f3n entre las caracter\u00edsticas del MDS y el aumento de la carga. Los investigadores identificaron varios factores que pueden contribuir a la carga parental y evaluaron su impacto con la escala de cla misma. Los factores investigados inclu\u00edan el bienestar econ\u00f3mico, el acceso a expertos, el tratamiento adecuado, la reducci\u00f3n de la esperanza de vida, el retraso en las pruebas gen\u00e9ticas y los retos con los familiares y la vida social.<\/strong><\/p>\n\n

\u03a3\u03c4\u03b7\u03bd \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1, \u03c0\u03bf\u03c5 \u03c0\u03c1\u03b1\u03b3\u03bc\u03b1\u03c4\u03bf\u03c0\u03bf\u03b9\u03ae\u03b8\u03b7\u03ba\u03b5 \u03bc\u03b5\u03c4\u03b1\u03be\u03cd \u03a3\u03b5\u03c0\u03c4\u03b5\u03bc\u03b2\u03c1\u03af\u03bf\u03c5 \u03ba\u03b1\u03b9 \u039d\u03bf\u03b5\u03bc\u03b2\u03c1\u03af\u03bf\u03c5 2020, \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03b5\u03af\u03c7\u03b1\u03bd 101 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2 \u03b1\u03c0\u03cc \u03cc\u03bb\u03bf \u03c4\u03bf\u03bd \u03ba\u03cc\u03c3\u03bc\u03bf. \u0397 \u03b7\u03bb\u03b9\u03ba\u03af\u03b1 \u03c4\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 \u03c4\u03bf \u03c3\u03cd\u03bd\u03b4\u03c1\u03bf\u03bc\u03bf \u03ba\u03c5\u03bc\u03b1\u03b9\u03bd\u03cc\u03c4\u03b1\u03bd \u03b1\u03c0\u03cc 0 \u03ad\u03c9\u03c2 51 \u03ad\u03c4\u03b7.<\/strong><\/p>\n\n

\u0397 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03ad\u03b4\u03b5\u03b9\u03be\u03b5 \u03cc\u03c4\u03b9:<\/strong><\/p>\n\n

- \u0397 \u03bc\u03b5\u03c4\u03b1\u03c6\u03bf\u03c1\u03ac \u03b5\u03bd\u03cc\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03bf\u03cd\u03c2 \u03bc\u03b5 \u039c\u0394\u03a3 \u03c0\u03c1\u03bf\u03ba\u03b1\u03bb\u03b5\u03af \u03b1\u03c5\u03c4\u03cc\u03bc\u03b1\u03c4\u03b7 \u03c7\u03b5\u03b9\u03c1\u03bf\u03c5\u03c1\u03b3\u03b9\u03ba\u03ae \u03b1\u03bd\u03b7\u03c3\u03c5\u03c7\u03af\u03b1, \u03c3\u03c5\u03bd\u03b1\u03b9\u03c3\u03b8\u03b7\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae \u03c6\u03cc\u03c1\u03c4\u03b9\u03c3\u03b7 \u03ba\u03b1\u03b9 \u03ba\u03b1\u03c4\u03ac\u03b8\u03bb\u03b9\u03c8\u03b7 \u03c3\u03c4\u03bf\u03c5\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2. Estos sentimientos contribuyen a una elevada puntuaci\u00f3n de la carga.<\/strong><\/p>\n\n

- Se demostr\u00f3 que la puntuaci\u00f3n de la carga aumenta con la presencia de epilepsia en el paciente con MDS. \u0394\u03b5\u03bd \u03c0\u03b1\u03c1\u03b1\u03c4\u03b7\u03c1\u03ae\u03b8\u03b7\u03ba\u03b5 \u03c3\u03b7\u03bc\u03b1\u03bd\u03c4\u03b9\u03ba\u03ae \u03c3\u03c5\u03c3\u03c7\u03ad\u03c4\u03b9\u03c3\u03b7 \u03c4\u03c9\u03bd cargings \u03bc\u03b5 \u03c4\u03b7\u03bd \u03b7\u03bb\u03b9\u03ba\u03af\u03b1, \u03c4\u03b7 \u03bb\u03bf\u03af\u03bc\u03c9\u03be\u03b7, \u03c4\u03b7\u03bd \u03ba\u03b9\u03bd\u03b7\u03c4\u03b9\u03ba\u03cc\u03c4\u03b7\u03c4\u03b1, \u03c4\u03b7\u03bd \u03b7\u03bb\u03b9\u03ba\u03af\u03b1 \u03c4\u03bf\u03c5 \u03b1\u03c3\u03b8\u03b5\u03bd\u03bf\u03cd\u03c2 \u03bc\u03b5 MDS \u03ae \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03ae \u03bc\u03b5 \u03c4\u03b7 \u03b4\u03b9\u03ac\u03c1\u03ba\u03b5\u03b9\u03b1 \u03c4\u03b7\u03c2 \u03b8\u03b5\u03c1\u03b1\u03c0\u03b5\u03af\u03b1\u03c2. Sin embargo, aunque los cient\u00edficos intentaron identificar s\u00edntomas o preocupaciones espec\u00edficas, no se puede excluir que la combinaci\u00f3n de todos los factores contribuya a la carga del cuidador.<\/strong><\/p>\n\n

- Aunque existen diferencias significativas entre los sistemas la distribuci\u00f3n geogr\u00e1fica del MDS y sus cuidadores no influy\u00f3 en la puntuaci\u00f3n de la carga.<\/strong><\/p>\n\n

\u0391\u03be\u03b9\u03bf\u03bb\u03cc\u03b3\u03b7\u03c3\u03b7 \u03c4\u03b7\u03c2 \u03b5\u03c0\u03b9\u03b2\u03ac\u03c1\u03c5\u03bd\u03c3\u03b7\u03c2 \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03c4\u03bf\u03c5 \u03c3\u03c5\u03bd\u03b4\u03c1\u03cc\u03bc\u03bf\u03c5 \u03b4\u03b9\u03c0\u03bb\u03b1\u03c3\u03b9\u03b1\u03c3\u03bc\u03bf\u03cd MECP2 D. Pehlivan et al. Neurol. 2022 Aug;133:1-8 (10.1016\/j.pediatrneurol.2022.05.008)<\/em><\/p>\n\n

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\u03a0\u0395\u03a1\u038a\u039b\u0397\u03a8\u0397 \u03a4\u0397\u03a3 \u0394\u0397\u039c\u039f\u03a3\u038a\u0395\u03a5\u03a3\u0397\u03a3<\/strong><\/p>\n\n

Antecedentes<\/strong>El s\u00edndrome de duplicaci\u00f3n MECP2 (MDS) es un trastorno neurogen\u00e9tico poco frecuente caracterizado por un grave trastorno del neurodesarrollo, epilepsia refractaria, infecciones recurrentes y problemas gastrointestinales funcionales. Debido a los importantes problemas cl\u00ednicos y la discapacidad de por vida de los ni\u00f1os con este trastorno, planteamos la hip\u00f3tesis de que la carga que soportan los padres\/cuidadores de estos ni\u00f1os es significativa. Sin embargo, no existen informes sobre el impacto en los cuidadores de individuos con MDS.<\/p>\n\n

Metodos:<\/strong> Desarrollamos y validamos una escala de carga para investigar los retos de los cuidadores de ni\u00f1os y adultos con MDS e identificamos los factores que contribuyen a la carga de los cuidadores. Desarrollamos un registro de pacientes para familias con MDS que cumpl\u00eda con la Ley de Portabilidad y Responsabilidad de los Seguros Sanitarios (Health Insurance Portability and Accountability Act) y realizamos una encuesta sobre la carga de los cuidadores a trav\u00e9s del registro.<\/p>\n\n

\u0391\u03c0\u03bf\u03c4\u03b5\u03bb\u03ad\u03c3\u03bc\u03b1\u03c4\u03b1:<\/strong> De 237 encuestas completadas, 101 fueron elegibles para el estudio. \u0395\u03bd\u03c4\u03bf\u03c0\u03af\u03c3\u03c4\u03b7\u03ba\u03b1\u03bd \u03c5\u03c8\u03b7\u03bb\u03cc\u03c4\u03b5\u03c1\u03b1 \u03b5\u03c0\u03af\u03c0\u03b5\u03b4\u03b1 \u03b1\u03c5\u03c4\u03cc\u03bc\u03b1\u03c4\u03b7\u03c2 \u03b1\u03bd\u03c4\u03af\u03b4\u03c1\u03b1\u03c3\u03b7\u03c2, \u03ba\u03b1\u03c4\u03ac\u03b8\u03bb\u03b9\u03c8\u03b7\u03c2 \u03ba\u03b1\u03b9 \u03c3\u03c5\u03b3\u03ba\u03b9\u03bd\u03b7\u03c3\u03b9\u03b1\u03ba\u03ae\u03c2 \u03c6\u03cc\u03c1\u03c4\u03b9\u03c3\u03b7\u03c2 \u03c3\u03c4\u03bf\u03c5\u03c2 \u03c0\u03b5\u03c1\u03b9\u03b8\u03ac\u03bb\u03c0\u03bf\u03bd\u03c4\u03b5\u03c2, \u03c4\u03b1 \u03bf\u03c0\u03bf\u03af\u03b1 \u03c3\u03c5\u03c3\u03c7\u03b5\u03c4\u03af\u03c3\u03c4\u03b7\u03ba\u03b1\u03bd \u03bc\u03b5 \u03c5\u03c8\u03b7\u03bb\u03cc\u03c4\u03b5\u03c1\u03b1 \u03c0\u03bf\u03c3\u03bf\u03c3\u03c4\u03ac \u03ba\u03b1\u03c1\u03b4\u03b9\u03b1\u03ba\u03ae\u03c2 \u03b5\u03c0\u03b9\u03b2\u03ac\u03c1\u03c5\u03bd\u03c3\u03b7\u03c2. \u0397 \u03b5\u03c0\u03b9\u03bb\u03b7\u03c8\u03af\u03b1 \u03ae\u03c4\u03b1\u03bd \u03c4\u03bf \u03bc\u03cc\u03bd\u03bf \u03ba\u03bb\u03b9\u03bd\u03b9\u03ba\u03cc \u03c7\u03b1\u03c1\u03b1\u03ba\u03c4\u03b7\u03c1\u03b9\u03c3\u03c4\u03b9\u03ba\u03cc \u03c0\u03bf\u03c5 \u03c0\u03c1\u03bf\u03ba\u03b1\u03bb\u03bf\u03cd\u03c3\u03b5 \u03bc\u03b5\u03b3\u03b1\u03bb\u03cd\u03c4\u03b5\u03c1\u03b7 \u03b5\u03c0\u03b9\u03b2\u03ac\u03c1\u03c5\u03bd\u03c3\u03b7 \u03c3\u03c4\u03bf\u03c5\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2 \u03bc\u03b5 \u039c\u0394\u03a3. \u0395\u03c0\u03b9\u03c0\u03bb\u03ad\u03bf\u03bd, \u03b4\u03b9\u03b1\u03c0\u03b9\u03c3\u03c4\u03ce\u03b8\u03b7\u03ba\u03b5 \u03bc\u03b5\u03b3\u03b1\u03bb\u03cd\u03c4\u03b5\u03c1\u03b7 \u03b5\u03c0\u03b9\u03b2\u03ac\u03c1\u03c5\u03bd\u03c3\u03b7 \u03c3\u03c4\u03bf\u03c5\u03c2 \u03b9\u03c3\u03c0\u03b1\u03bd\u03cc\u03c6\u03c9\u03bd\u03bf\u03c5\u03c2 \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2. \u0397 \u03b4\u03b9\u03ac\u03c1\u03ba\u03b5\u03b9\u03b1 \u03c4\u03b7\u03c2 \u03b8\u03b5\u03c1\u03b1\u03c0\u03b5\u03af\u03b1\u03c2 \u03c3\u03c5\u03c3\u03c7\u03b5\u03c4\u03af\u03c3\u03c4\u03b7\u03ba\u03b5 \u03b1\u03c1\u03bd\u03b7\u03c4\u03b9\u03ba\u03ac \u03bc\u03b5 \u03c4\u03b7\u03bd \u03b1\u03cd\u03be\u03b7\u03c3\u03b7 \u03c4\u03b7\u03c2 \u03b1\u03c1\u03c4\u03b7\u03c1\u03b9\u03b1\u03ba\u03ae\u03c2 \u03c0\u03af\u03b5\u03c3\u03b7\u03c2.<\/p>\n\n

\u03a3\u03c5\u03bc\u03c0\u03b5\u03c1\u03ac\u03c3\u03bc\u03b1\u03c4\u03b1:<\/strong> Este es el primer estudio que investiga la carga de los cuidadores de individuos con MDS e identifica varios factores que contribuyen a una mayor carga. \u0397 \u03b1\u03bd\u03c4\u03b9\u03bc\u03b5\u03c4\u03ce\u03c0\u03b9\u03c3\u03b7 \u03b1\u03c5\u03c4\u03ce\u03bd \u03c4\u03c9\u03bd \u03c0\u03c1\u03bf\u03b2\u03bb\u03b7\u03bc\u03ac\u03c4\u03c9\u03bd \u03ad\u03c7\u03b5\u03b9 \u03c4\u03b7 \u03b4\u03c5\u03bd\u03b1\u03c4\u03cc\u03c4\u03b7\u03c4\u03b1 \u03bd\u03b1 \u03b2\u03b5\u03bb\u03c4\u03b9\u03ce\u03c3\u03b5\u03b9 \u03c4\u03b7\u03bd \u03c5\u03b3\u03b5\u03af\u03b1 \u03c4\u03c9\u03bd \u03b1\u03c4\u03cc\u03bc\u03c9\u03bd \u03bc\u03b5 \u039c\u0394\u03a3 \u03ba\u03b1\u03b9 \u03bd\u03b1 \u03c3\u03c5\u03bc\u03b2\u03ac\u03bb\u03b5\u03b9 \u03c3\u03c4\u03b7\u03bd \u03b5\u03c5\u03b7\u03bc\u03b5\u03c1\u03af\u03b1 \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03c4\u03bf\u03c5\u03c2.<\/p>\n\n

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Ver la publicaci\u00f3n<\/a><\/div>\n<\/div>\n\n
<\/div>","protected":false},"excerpt":{"rendered":"

El s\u00edndrome de duplicaci\u00f3n MECP2 (MDS) es un trastorno neurogen\u00e9tico progresivo con discapacidad intelectual y motora. Los ni\u00f1os con este s\u00edndrome no pueden vivir de forma independiente y dependen en […]<\/p>","protected":false},"author":1,"featured_media":13606,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[113],"tags":[],"class_list":["post-15863","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-publicacion"],"yoast_head":"\nEvaluaci\u00f3n de la carga que supone para los cuidadores el s\u00edndrome de duplicaci\u00f3n MECP2 - 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\/el\/\u03b1\u03be\u03b9\u03bf\u03bb\u03cc\u03b3\u03b7\u03c3\u03b7-\u03c4\u03b7\u03c2-\u03b5\u03c0\u03b9\u03b2\u03ac\u03c1\u03c5\u03bd\u03c3\u03b7\u03c2-\u03c4\u03c9\u03bd-\u03c6\u03c1\u03bf\u03bd\u03c4\/?lang=es\" \/>\n<meta property=\"og:locale\" content=\"el_GR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Evaluaci\u00f3n de la carga que supone para los cuidadores el s\u00edndrome de duplicaci\u00f3n MECP2 - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"El s\u00edndrome de duplicaci\u00f3n MECP2 (MDS) es un trastorno neurogen\u00e9tico progresivo con discapacidad intelectual y motora. 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