{"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":"ocena-pomocy-potrzebnej-opiekunom-pacjentow-z-choroba-duplikacji-mecp2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/ocena-pomocy-potrzebnej-opiekunom-pacjentow-z-choroba-duplikacji-mecp2\/","title":{"rendered":"Ocena opieki asystenckiej dla opiekun\u00f3w pacjent\u00f3w cierpi\u0105cych na syndrom duplikacji MECP2"},"content":{"rendered":"<p><strong>Sindrome da Duplicazione di MECP2 jest post\u0119puj\u0105c\u0105 chorob\u0105 neurogenetyczn\u0105, kt\u00f3ra obejmuje zaburzenia zar\u00f3wno intelektualne, jak i motoryczne. Dzieci dotkni\u0119te tym zespo\u0142em nie mog\u0105 by\u0107 samodzielne i musz\u0105 by\u0107 pod sta\u0142\u0105 opiek\u0105 osoby, kt\u00f3ra zajmie si\u0119 nimi, a w szczeg\u00f3lno\u015bci ich rodzicami.<\/strong><\/p>\n\n<p><strong>Dla tych ostatnich opieka nad dzieckiem z post\u0119puj\u0105c\u0105 niepe\u0142nosprawno\u015bci\u0105 mo\u017ce by\u0107 niezwykle trudna, zar\u00f3wno ze wzgl\u0119du na kosztowne leczenie, jak i brak odpowiedniego wsparcia.<\/strong><\/p>\n\n<p><strong>Pomimo tego, \u017ce jest to bardzo wa\u017cne, dobrostan opiekun\u00f3w dzieci dotkni\u0119tych syndromem nie jest uwa\u017cany za wa\u017cny czynnik wp\u0142ywaj\u0105cy na popraw\u0119 ich zdrowia. Ponadto, zmniejszenie masy cia\u0142a opiekun\u00f3w mog\u0142oby nie tylko poprawi\u0107 jako\u015b\u0107 \u017cycia dzieci, ale tak\u017ce ich rodzin, co by\u0142oby korzystne dla ca\u0142ego spo\u0142ecze\u0144stwa.<\/strong><\/p>\n\n<p><strong>Dr Pehlivan i jego zesp\u00f3\u0142 po raz pierwszy zbadali carico assistenziale noszone przez opiekun\u00f3w pacjent\u00f3w cierpi\u0105cych na syndrom duplikacji MECP2. Opracowali oni skal\u0119 do oceny skutk\u00f3w kosztownego stresu, na jaki nara\u017ceni s\u0105 opiekunowie. Skala ta zosta\u0142a wykorzystana do skorelowania objaw\u00f3w zespo\u0142u i opieki wymaganej od os\u00f3b opiekuj\u0105cych si\u0119 pacjentami. I ricercatori hanno identificato diversi fattori che contribuiscono allo stress dei genitori e ne hanno valutato l'impatto con la scala da loro costruita. Badane aspekty obejmuj\u0105 korzy\u015bci finansowe, dost\u0119p do ekspert\u00f3w, odpowiednie leczenie, obni\u017con\u0105 jako\u015b\u0107 \u017cycia, b\u0142\u0119dy w testach genetycznych oraz interakcje z innymi cz\u0142onkami rodziny i spo\u0142ecze\u0144stwa\".<\/strong><\/p>\n\n<p><strong>Badanie zosta\u0142o przeprowadzone mi\u0119dzy wrze\u015bniem a listopadem 2020 r. i obj\u0119\u0142o 101 opiekun\u00f3w z ca\u0142ego \u015bwiata. Wiek pacjent\u00f3w z MDS w tym badaniu waha\u0142 si\u0119 od 0 do 51 lat.<\/strong><\/p>\n\n<p><strong>Lo studio dimostra che:<\/strong><\/p>\n\n<p><strong>- Opieka nad pacjentami z MDS powoduje l\u0119k, niepok\u00f3j emocjonalny i depresj\u0119. Uczucia te przyczyniaj\u0105 si\u0119 do pogorszenia wynik\u00f3w w skali.<\/strong><\/p>\n\n<p><strong>- Stwierdzono, \u017ce wska\u017anik ten wzrasta w przypadku wyst\u0119powania epilepsji u pacjent\u00f3w z MDS. Nie zaobserwowano \u017cadnych szczeg\u00f3lnych korelacji w odniesieniu do zapar\u0107, infekcji, mobilno\u015bci, wieku pacjenta lub osoby lecz\u0105cej si\u0119, czasu trwania leczenia. Pomimo faktu, \u017ce scenariusze zosta\u0142y zaprojektowane tak, aby koncentrowa\u0107 si\u0119 na konkretnych objawach lub obawach, nie mo\u017cna zaprzeczy\u0107, \u017ce jest to suma poszczeg\u00f3lnych pacjent\u00f3w, kt\u00f3rzy przyczyniaj\u0105 si\u0119 do opieki nad opiekunem.<\/strong><\/p>\n\n<p><strong>- Poniewa\u017c istniej\u0105 znacz\u0105ce r\u00f3\u017cnice mi\u0119dzy r\u00f3\u017cnymi systemami opieki zdrowotnej, rozmieszczenie geograficzne pacjent\u00f3w z MDS i tego, kto z nich korzysta z leczenia, nie wydaje si\u0119 mie\u0107 wp\u0142ywu na uzyskany wynik.<\/strong><\/p>\n\n<p><em>Ocena obci\u0105\u017cenia opiekun\u00f3w zespo\u0142em duplikacji MECP2 D. Pehlivan et al. Pediatr. 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>RIASSUNTO DELLA PUBBLICAZIONE<\/strong><\/p>\n\n<p><strong>Il contesto:<\/strong> Zesp\u00f3\u0142 duplikacji MECP2 (MDS) jest rzadk\u0105 chorob\u0105 neurogenn\u0105 charakteryzuj\u0105c\u0105 si\u0119 powa\u017cnymi zaburzeniami rozwoju neurologicznego, padaczk\u0105, nawracaj\u0105cymi infekcjami i problemami z funkcjonowaniem przewodu pokarmowego. W zwi\u0105zku z istotnymi problemami klinicznymi i niepe\u0142nosprawno\u015bci\u0105 \u017cyciow\u0105 dzieci z t\u0105 chorob\u0105, uwa\u017cam, \u017ce pomoc rodzic\u00f3w\/opiekun\u00f3w jest znacz\u0105ca. Nie przeprowadzono jednak bada\u0144 dotycz\u0105cych wp\u0142ywu, jaki ma wst\u0119pna opieka nad osobami dotkni\u0119tymi MDS.<\/p>\n\n<p><strong>Metodi:<\/strong> Opracowali\u015bmy i zatwierdzili\u015bmy skal\u0119 stresu w celu zbadania trudno\u015bci os\u00f3b opiekuj\u0105cych si\u0119 dzie\u0107mi lub doros\u0142ymi dotkni\u0119tymi MDS oraz zidentyfikowania koszt\u00f3w opieki nad nimi. Utworzyli\u015bmy rejestr pacjent\u00f3w zgodnie z ustaw\u0105 o przeno\u015bno\u015bci i odpowiedzialno\u015bci w zakresie ubezpieczenia zdrowotnego dla rodzin dotkni\u0119tych chorob\u0105 i przeprowadzili\u015bmy badanie koszt\u00f3w pomocy opiekun\u00f3w za po\u015brednictwem rejestru.<\/p>\n\n<p><strong>Wyniki:<\/strong> Spo\u015br\u00f3d 237 os\u00f3b, kt\u00f3re wzi\u0119\u0142y udzia\u0142 w ankiecie, 101 uznano za odpowiednie do wzi\u0119cia udzia\u0142u w badaniu. Zidentyfikowali\u015bmy wy\u017cszy poziom postrzeganego przez siebie l\u0119ku, depresji i stresu emocjonalnego u os\u00f3b cierpi\u0105cych na choroby, kt\u00f3re koreluj\u0105 z b\u00f3lem scenicznym. Padaczka jest jedynym efektem klinicznym, kt\u00f3ry powoduje wzrost cz\u0119sto\u015bci akcji serca u os\u00f3b opiekuj\u0105cych si\u0119 pacjentami z MDS. By\u0142o ono wi\u0119ksze w przypadku hiszpa\u0144skich opiekun\u00f3w. Czas trwania pomocy jest negatywnie skorelowany z czasem trwania choroby.<\/p>\n\n<p><strong>Wnioski:<\/strong> Jest to pierwsze badanie dotycz\u0105ce opieki wspomagaj\u0105cej u os\u00f3b opiekuj\u0105cych si\u0119 chorymi na MDS i identyfikuj\u0105ce r\u00f3\u017cne czynniki, kt\u00f3re przyczyniaj\u0105 si\u0119 do jej zwi\u0119kszenia. Uwzgl\u0119dnienie tych obaw mo\u017ce przyczyni\u0107 si\u0119 do poprawy stanu zdrowia os\u00f3b z MDS, a tak\u017ce do poprawy samopoczucia os\u00f3b sprawuj\u0105cych nad nimi opiek\u0119.<\/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\">Alla pubblicazione<\/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\/pl\/ocena-pomocy-potrzebnej-opiekunom-pacjentow-z-choroba-duplikacji-mecp2\/?lang=it\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\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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