{"id":15971,"date":"2023-01-17T00:23:00","date_gmt":"2023-01-17T00:23:00","guid":{"rendered":"https:\/\/dupmecp2.eu\/valutazione-del-carico-assistenziale-per-i-caregiver-dei-pazienti-affetti-dalla-sindrome-da-duplicazione-di-mecp2\/"},"modified":"2023-04-17T16:02:23","modified_gmt":"2023-04-17T16:02:23","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%b2%ce%bf%ce%ae%ce%b8%ce%b5%ce%b9%ce%b1%cf%82-%cf%80%ce%bf%cf%85-%cf%87%cf%81%ce%b5%ce%b9%ce%ac%ce%b6%ce%bf%ce%bd","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%b2%ce%bf%ce%ae%ce%b8%ce%b5%ce%b9%ce%b1%cf%82-%cf%80%ce%bf%cf%85-%cf%87%cf%81%ce%b5%ce%b9%ce%ac%ce%b6%ce%bf%ce%bd\/","title":{"rendered":"Valutazione del carico assistenziale per i caregiver dei pazienti affetti dalla Sindrome da Duplicazione di MECP2"},"content":{"rendered":"<p><strong>La Sindrome da Duplicazione di MECP2 e' una malattia neurogenetica progressiva che comporta disabilita' sia intellettive che motorie. I bambini affetti da questa sindrome non posso essere autonomi e hanno bisogno costantemente di qualcuno che si prenda cura di loro e, in particolare, dei genitori.<\/strong><\/p>\n\n<p><strong>\u0393\u03b9\u03b1 \u03c4\u03bf\u03c5\u03c2 \u03c4\u03b5\u03bb\u03b5\u03c5\u03c4\u03b1\u03af\u03bf\u03c5\u03c2, \u03b7 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1 \u03b5\u03bd\u03cc\u03c2 \u03c0\u03c1\u03bf\u03bf\u03b4\u03b5\u03c5\u03c4\u03b9\u03ba\u03ac \u03b1\u03bd\u03ac\u03c0\u03b7\u03c1\u03bf\u03c5 \u03c0\u03b1\u03b9\u03b4\u03b9\u03bf\u03cd \u03bc\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b5\u03be\u03b1\u03b9\u03c1\u03b5\u03c4\u03b9\u03ba\u03ac \u03b4\u03cd\u03c3\u03ba\u03bf\u03bb\u03b7, \u03c4\u03cc\u03c3\u03bf \u03bb\u03cc\u03b3\u03c9 \u03c4\u03b7\u03c2 \u03b4\u03b1\u03c0\u03b1\u03bd\u03b7\u03c1\u03ae\u03c2 \u03b1\u03bd\u03ac\u03b3\u03ba\u03b7\u03c2 \u03b3\u03b9\u03b1 \u03b8\u03b5\u03c1\u03b1\u03c0\u03b5\u03af\u03b1 \u03cc\u03c3\u03bf \u03ba\u03b1\u03b9 \u03bb\u03cc\u03b3\u03c9 \u03c4\u03b7\u03c2 \u03ad\u03bb\u03bb\u03b5\u03b9\u03c8\u03b7\u03c2 \u03ba\u03b1\u03c4\u03ac\u03bb\u03bb\u03b7\u03bb\u03b7\u03c2 \u03c5\u03c0\u03bf\u03c3\u03c4\u03ae\u03c1\u03b9\u03be\u03b7\u03c2.<\/strong><\/p>\n\n<p><strong>Nonostante sia molto impattante, il benessere dei caregiver dei bambini affetti dalla sindrome non e' considerato come un fattore importante per migliorare la salute dei bambini stessi. Inoltre, alleviare il peso portato dai caregivers potrebbe non solo migliorare la qualita' di vita dei bambini ma anche quella delle loro famiglie, e questo sarebbe un vantaggio per l'intera societa'.<\/strong><\/p>\n\n<p><strong>\u039f \u0394\u03c1 Pehlivan \u03ba\u03b1\u03b9 \u03b7 \u03bf\u03bc\u03ac\u03b4\u03b1 \u03c4\u03bf\u03c5 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7\u03c3\u03b1\u03bd, \u03b3\u03b9\u03b1 \u03c0\u03c1\u03ce\u03c4\u03b7 \u03c6\u03bf\u03c1\u03ac, \u03c4\u03bf carico assistenziale \u03c0\u03bf\u03c5 \u03c6\u03bf\u03c1\u03bf\u03cd\u03bd \u03bf\u03b9 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2 \u03c4\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03c0\u03bf\u03c5 \u03c0\u03ac\u03c3\u03c7\u03bf\u03c5\u03bd \u03b1\u03c0\u03cc \u03c4\u03bf Sindrome Duplication MECP2. \u0391\u03bd\u03ad\u03c0\u03c4\u03c5\u03be\u03b1\u03bd \u03bc\u03b9\u03b1 \u03ba\u03bb\u03af\u03bc\u03b1\u03ba\u03b1 \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u03b1\u03be\u03b9\u03bf\u03bb\u03cc\u03b3\u03b7\u03c3\u03b7 \u03c4\u03c9\u03bd \u03b5\u03c0\u03b9\u03c0\u03c4\u03ce\u03c3\u03b5\u03c9\u03bd \u03c4\u03bf\u03c5 \u03b4\u03b1\u03c0\u03b1\u03bd\u03b7\u03c1\u03bf\u03cd \u03c3\u03c4\u03c1\u03b5\u03c2 \u03c3\u03c4\u03bf \u03bf\u03c0\u03bf\u03af\u03bf \u03c5\u03c0\u03bf\u03b2\u03ac\u03bb\u03bb\u03bf\u03bd\u03c4\u03b1\u03b9 \u03bf\u03b9 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2. \u0397 \u03ba\u03bb\u03af\u03bc\u03b1\u03ba\u03b1 \u03b1\u03c5\u03c4\u03ae \u03c7\u03c1\u03b7\u03c3\u03b9\u03bc\u03bf\u03c0\u03bf\u03b9\u03ae\u03b8\u03b7\u03ba\u03b5 \u03b3\u03b9\u03b1 \u03c4\u03b7 \u03c3\u03c5\u03c3\u03c7\u03ad\u03c4\u03b9\u03c3\u03b7 \u03c4\u03c9\u03bd \u03c3\u03c5\u03bc\u03c0\u03c4\u03c9\u03bc\u03ac\u03c4\u03c9\u03bd \u03c4\u03bf\u03c5 \u03c3\u03c5\u03bd\u03b4\u03c1\u03cc\u03bc\u03bf\u03c5 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1\u03c2 \u03c0\u03bf\u03c5 \u03b1\u03c0\u03b1\u03b9\u03c4\u03b5\u03af\u03c4\u03b1\u03b9 \u03b1\u03c0\u03cc \u03c4\u03bf\u03c5\u03c2 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ad\u03c2 \u03c4\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd. I ricercatori hanno identificato diversi fattori che contribuiscono allo stress dei genitori e ne hanno valutato l'impatto con la scala da loro costruita. Gli aspetti investigati sono il benessere finanziario, l'accesso a esperti, trattamenti appropriati, ridotta speranza di vita, ritardi nei test genetici e interazioni con gli altri membri della famiglia e la societa\".<\/strong><\/p>\n\n<p><strong>\u0397 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03b4\u03b9\u03b5\u03be\u03ae\u03c7\u03b8\u03b7 \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 \u03ba\u03b1\u03b9 \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. L'eta' dei pazienti con MDS in questo studio varia da 0 a 51 anni.<\/strong><\/p>\n\n<p><strong>Lo studio dimostra che:<\/strong><\/p>\n\n<p><strong>- \u0397 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1 \u03c4\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03bc\u03b5 MDS \u03c0\u03c1\u03bf\u03ba\u03b1\u03bb\u03b5\u03af \u03ac\u03b3\u03c7\u03bf\u03c2, \u03c3\u03c5\u03bd\u03b1\u03b9\u03c3\u03b8\u03b7\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae \u03b4\u03c5\u03c3\u03c6\u03bf\u03c1\u03af\u03b1 \u03ba\u03b1\u03b9 \u03ba\u03b1\u03c4\u03ac\u03b8\u03bb\u03b9\u03c8\u03b7. Questi sentimenti contribuiscono ad innalzare il punteggio raggiunto nella scala.<\/strong><\/p>\n\n<p><strong>- Si e' dimostrato che il punteggio aumenta in presenza di epilessia nei pazienti MDS. Nessuna correlazione particolare e' stata e' rilevata in relazione a constipazione, infezioni, mobilita', eta' del paziente o di chi se ne prende cura, durata delle cure. \u03a0\u03b1\u03c1\u03ac \u03c4\u03bf \u03b3\u03b5\u03b3\u03bf\u03bd\u03cc\u03c2 \u03cc\u03c4\u03b9 \u03c4\u03b1 \u03c3\u03b5\u03bd\u03ac\u03c1\u03b9\u03b1 \u03c3\u03c7\u03b5\u03b4\u03b9\u03ac\u03c3\u03c4\u03b7\u03ba\u03b1\u03bd \u03b3\u03b9\u03b1 \u03bd\u03b1 \u03b5\u03c0\u03b9\u03ba\u03b5\u03bd\u03c4\u03c1\u03c9\u03b8\u03bf\u03cd\u03bd \u03c3\u03b5 \u03c3\u03c5\u03b3\u03ba\u03b5\u03ba\u03c1\u03b9\u03bc\u03ad\u03bd\u03b1 \u03c3\u03c5\u03bc\u03c0\u03c4\u03ce\u03bc\u03b1\u03c4\u03b1 \u03ae \u03b1\u03bd\u03b7\u03c3\u03c5\u03c7\u03af\u03b5\u03c2, \u03b4\u03b5\u03bd \u03bc\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1 \u03b1\u03bc\u03c6\u03b9\u03c3\u03b2\u03b7\u03c4\u03b7\u03b8\u03b5\u03af \u03cc\u03c4\u03b9 \u03b5\u03af\u03bd\u03b1\u03b9 \u03c4\u03bf \u03c3\u03cd\u03bd\u03bf\u03bb\u03bf \u03c4\u03c9\u03bd \u03bc\u03b5\u03bc\u03bf\u03bd\u03c9\u03bc\u03ad\u03bd\u03c9\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03c0\u03bf\u03c5 \u03c3\u03c5\u03bc\u03b2\u03ac\u03bb\u03bb\u03bf\u03c5\u03bd \u03c3\u03c4\u03b7 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1 \u03c4\u03bf\u03c5 \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ae.<\/strong><\/p>\n\n<p><strong>- Sebbene ci siano differenze significative tra i vari sistemi sanitari, la distribuzione geografica dei pazienti MDS e di chi se ne prende cura non sembra influenzare il punteggio ottenuto.<\/strong><\/p>\n\n<p><em>\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<p><\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p><\/p>\n\n<p><strong>\u0391\u039d\u0391\u0394\u0397\u039c\u039f\u03a3\u038a\u0395\u03a5\u03a3\u0397 \u03a4\u0397\u03a3 \u0394\u0397\u039c\u039f\u03a3\u038a\u0395\u03a5\u03a3\u0397\u03a3<\/strong><\/p>\n\n<p><strong>Il contesto:<\/strong> \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 \u03bc\u03b9\u03b1 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1 \u03bd\u03b5\u03c5\u03c1\u03bf\u03b3\u03b5\u03bd\u03ae\u03c2 \u03bd\u03cc\u03c3\u03bf\u03c2 \u03c0\u03bf\u03c5 \u03c7\u03b1\u03c1\u03b1\u03ba\u03c4\u03b7\u03c1\u03af\u03b6\u03b5\u03c4\u03b1\u03b9 \u03b1\u03c0\u03cc \u03c3\u03bf\u03b2\u03b1\u03c1\u03ad\u03c2 \u03bd\u03b5\u03c5\u03c1\u03bf\u03bb\u03bf\u03b3\u03b9\u03ba\u03ad\u03c2 \u03b4\u03b9\u03b1\u03c4\u03b1\u03c1\u03b1\u03c7\u03ad\u03c2 \u03c4\u03b7\u03c2 \u03b1\u03bd\u03ac\u03c0\u03c4\u03c5\u03be\u03b7\u03c2, \u03b5\u03c0\u03b9\u03bb\u03b7\u03c8\u03af\u03b1, \u03b5\u03c0\u03b1\u03bd\u03b1\u03bb\u03b1\u03bc\u03b2\u03b1\u03bd\u03cc\u03bc\u03b5\u03bd\u03b5\u03c2 \u03bb\u03bf\u03b9\u03bc\u03ce\u03be\u03b5\u03b9\u03c2 \u03ba\u03b1\u03b9 \u03c0\u03c1\u03bf\u03b2\u03bb\u03ae\u03bc\u03b1\u03c4\u03b1 \u03bc\u03b5 \u03c4\u03b7 \u03b3\u03b1\u03c3\u03c4\u03c1\u03b5\u03bd\u03c4\u03b5\u03c1\u03b9\u03ba\u03ae \u03bb\u03b5\u03b9\u03c4\u03bf\u03c5\u03c1\u03b3\u03af\u03b1. A causa degli importanti problemi clinici e della disabilita' a vita dei bambini con questa malattia, ipotizziamo che il carico assistenziale dei genitori \/ caregiver sia significativo. Tuttavia, non ci sono studi sugli impatti che ha il prendersi cura di persone affette da MDS.<\/p>\n\n<p><strong>Metodi:<\/strong> \u03ad\u03c7\u03bf\u03c5\u03bc\u03b5 \u03b1\u03bd\u03b1\u03c0\u03c4\u03cd\u03be\u03b5\u03b9 \u03ba\u03b1\u03b9 \u03b5\u03c0\u03b9\u03ba\u03c5\u03c1\u03ce\u03c3\u03b5\u03b9 \u03bc\u03b9\u03b1 \u03ba\u03bb\u03af\u03bc\u03b1\u03ba\u03b1 \u03ac\u03b3\u03c7\u03bf\u03c5\u03c2 \u03b3\u03b9\u03b1 \u03c4\u03b7 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03c4\u03c9\u03bd \u03b4\u03c5\u03c3\u03ba\u03bf\u03bb\u03b9\u03ce\u03bd \u03c4\u03bf\u03c5 \u03b1\u03c4\u03cc\u03bc\u03bf\u03c5 \u03c0\u03bf\u03c5 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b6\u03b5\u03b9 \u03c0\u03b1\u03b9\u03b4\u03b9\u03ac \u03ae \u03b5\u03bd\u03ae\u03bb\u03b9\u03ba\u03b5\u03c2 \u03c0\u03bf\u03c5 \u03c0\u03ac\u03c3\u03c7\u03bf\u03c5\u03bd \u03b1\u03c0\u03cc \u039c\u0394\u03a3 \u03ba\u03b1\u03b9 \u03b3\u03b9\u03b1 \u03c4\u03b7\u03bd \u03b1\u03bd\u03b1\u03b3\u03bd\u03ce\u03c1\u03b9\u03c3\u03b7 \u03c4\u03c9\u03bd \u03c3\u03b7\u03bc\u03b1\u03bd\u03c4\u03b9\u03ba\u03ce\u03bd \u03c0\u03b1\u03c1\u03b1\u03b3\u03cc\u03bd\u03c4\u03c9\u03bd \u03c0\u03bf\u03c5 \u03c3\u03c5\u03bc\u03b2\u03ac\u03bb\u03bb\u03bf\u03c5\u03bd \u03c3\u03c4\u03b7 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b4\u03b1 \u03c4\u03bf\u03c5 \u03b1\u03c3\u03b8\u03b5\u03bd\u03bf\u03cd\u03c2. \u0394\u03b7\u03bc\u03b9\u03bf\u03c5\u03c1\u03b3\u03ae\u03c3\u03b1\u03bc\u03b5 \u03ad\u03bd\u03b1 \u03bc\u03b7\u03c4\u03c1\u03ce\u03bf \u03b1\u03c3\u03b8\u03b5\u03bd\u03ce\u03bd \u03c3\u03cd\u03bc\u03c6\u03c9\u03bd\u03b1 \u03bc\u03b5 \u03c4\u03bf \u03bd\u03cc\u03bc\u03bf \u03b3\u03b9\u03b1 \u03c4\u03b7 \u03c6\u03bf\u03c1\u03b7\u03c4\u03cc\u03c4\u03b7\u03c4\u03b1 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03bd \u03b5\u03c5\u03b8\u03cd\u03bd\u03b7 \u03cc\u03c3\u03bf\u03bd \u03b1\u03c6\u03bf\u03c1\u03ac \u03c4\u03b7\u03bd \u03b1\u03c3\u03c6\u03ac\u03bb\u03b9\u03c3\u03b7 \u03c5\u03b3\u03b5\u03af\u03b1\u03c2 \u03b3\u03b9\u03b1 \u03c4\u03b9\u03c2 \u03bf\u03b9\u03ba\u03bf\u03b3\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2 \u03c0\u03bf\u03c5 \u03c0\u03ac\u03c3\u03c7\u03bf\u03c5\u03bd \u03b1\u03c0\u03cc \u03c4\u03b7 \u03bd\u03cc\u03c3\u03bf \u03ba\u03b1\u03b9 \u03c0\u03c1\u03b1\u03b3\u03bc\u03b1\u03c4\u03bf\u03c0\u03bf\u03b9\u03ae\u03c3\u03b1\u03bc\u03b5 \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1 \u03b3\u03b9\u03b1 \u03c4\u03bf \u03ba\u03cc\u03c3\u03c4\u03bf\u03c2 \u03b2\u03bf\u03ae\u03b8\u03b5\u03b9\u03b1\u03c2 \u03c4\u03c9\u03bd \u03c6\u03c1\u03bf\u03bd\u03c4\u03b9\u03c3\u03c4\u03ce\u03bd \u03bc\u03ad\u03c3\u03c9 \u03c4\u03bf\u03c5 \u03bc\u03b7\u03c4\u03c1\u03ce\u03bf\u03c5.<\/p>\n\n<p><strong>Risultati:<\/strong> \u0391\u03c0\u03cc \u03c4\u03b1 237 \u03ac\u03c4\u03bf\u03bc\u03b1 \u03c0\u03bf\u03c5 \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03b5\u03af\u03c7\u03b1\u03bd \u03c3\u03c4\u03b7\u03bd \u03ad\u03c1\u03b5\u03c5\u03bd\u03b1, 101 \u03ba\u03c1\u03af\u03b8\u03b7\u03ba\u03b1\u03bd \u03ba\u03b1\u03c4\u03ac\u03bb\u03bb\u03b7\u03bb\u03b1 \u03b3\u03b9\u03b1 \u03bd\u03b1 \u03bb\u03ac\u03b2\u03bf\u03c5\u03bd \u03bc\u03ad\u03c1\u03bf\u03c2 \u03c3\u03c4\u03b7 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7. \u0395\u03bd\u03c4\u03bf\u03c0\u03af\u03c3\u03b1\u03bc\u03b5 \u03c5\u03c8\u03b7\u03bb\u03cc\u03c4\u03b5\u03c1\u03b1 \u03b5\u03c0\u03af\u03c0\u03b5\u03b4\u03b1 \u03b1\u03c5\u03c4\u03bf\u03b1\u03bd\u03c4\u03b9\u03bb\u03b1\u03bc\u03b2\u03b1\u03bd\u03cc\u03bc\u03b5\u03bd\u03bf\u03c5 \u03ac\u03b3\u03c7\u03bf\u03c5\u03c2, \u03ba\u03b1\u03c4\u03ac\u03b8\u03bb\u03b9\u03c8\u03b7\u03c2 \u03ba\u03b1\u03b9 \u03c3\u03c5\u03bd\u03b1\u03b9\u03c3\u03b8\u03b7\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae\u03c2 \u03b4\u03c5\u03c3\u03c6\u03bf\u03c1\u03af\u03b1\u03c2 \u03c3\u03b5 \u03ac\u03c4\u03bf\u03bc\u03b1 \u03c0\u03bf\u03c5 \u03c0\u03ac\u03c3\u03c7\u03bf\u03c5\u03bd \u03b1\u03c0\u03cc \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b5\u03c2 \u03c0\u03bf\u03c5 \u03c3\u03c5\u03c3\u03c7\u03b5\u03c4\u03af\u03b6\u03bf\u03bd\u03c4\u03b1\u03b9 \u03bc\u03b5 \u03c0\u03cc\u03bd\u03bf \u03c3\u03c4\u03b1\u03b4\u03af\u03bf\u03c5. \u0397 \u03b5\u03c0\u03b9\u03bb\u03b7\u03c8\u03af\u03b1 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b7 \u03bc\u03cc\u03bd\u03b7 \u03ba\u03bb\u03b9\u03bd\u03b9\u03ba\u03ae \u03b5\u03c0\u03af\u03b4\u03c1\u03b1\u03c3\u03b7 \u03c0\u03bf\u03c5 \u03c0\u03c1\u03bf\u03ba\u03b1\u03bb\u03b5\u03af \u03b1\u03cd\u03be\u03b7\u03c3\u03b7 \u03c4\u03bf\u03c5 \u03ba\u03b1\u03c1\u03b4\u03b9\u03b1\u03ba\u03bf\u03cd \u03c1\u03c5\u03b8\u03bc\u03bf\u03cd \u03c3\u03b5 \u03ac\u03c4\u03bf\u03bc\u03b1 \u03c0\u03bf\u03c5 \u03c6\u03c1\u03bf\u03bd\u03c4\u03af\u03b6\u03bf\u03c5\u03bd \u03b1\u03c3\u03b8\u03b5\u03bd\u03b5\u03af\u03c2 \u03bc\u03b5 \u039c\u0394\u03a3. \u0397 onere era maggiore per i caregiver ispanici. La durata dell'assistenza \u00e8 correlata negativamente con il punteggio dell'onere.<\/p>\n\n<p><strong>Conclusioni:<\/strong> questo e' il primo studio del carico assistenziale nelle persone che si prendono cura di individuetti affetti da MDS e che identifica i diversi fattori che contribuiscono ad aumentarlo. Affrontare queste preoccupazioni darebbe la possibilita' di migliorare la salute degli individu con MDS contribuendo anche al benessere di chi si prende cura di loro.<\/p>\n\n<p><\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p><\/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\">\u0394\u03b7\u03bc\u03bf\u03c3\u03af\u03b5\u03c5\u03c3\u03b7<\/a><\/div>\n<\/div>\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>","protected":false},"excerpt":{"rendered":"<p>La Sindrome da Duplicazione di MECP2 e\u2019 una malattia neurogenetica progressiva che comporta disabilita\u2019 sia intellettive che motorie. I bambini affetti da questa sindrome non posso essere autonomi e hanno [&hellip;]<\/p>","protected":false},"author":1,"featured_media":13605,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[139],"tags":[],"class_list":["post-15971","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-pubblicazioni"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Valutazione del carico assistenziale per i caregiver dei pazienti affetti dalla Sindrome da Duplicazione di 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-\u03b2\u03bf\u03ae\u03b8\u03b5\u03b9\u03b1\u03c2-\u03c0\u03bf\u03c5-\u03c7\u03c1\u03b5\u03b9\u03ac\u03b6\u03bf\u03bd\/?lang=it\" \/>\n<meta property=\"og:locale\" content=\"el_GR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Valutazione del carico assistenziale per i caregiver dei pazienti affetti dalla Sindrome da Duplicazione di MECP2 - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"La Sindrome da Duplicazione di MECP2 e\u2019 una malattia neurogenetica progressiva che comporta disabilita\u2019 sia intellettive che motorie. 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