{"id":11751,"date":"2023-01-17T00:23:00","date_gmt":"2023-01-17T00:23:00","guid":{"rendered":"https:\/\/dupmecp2.eu\/assessing-the-burden-on-caregivers-of-mecp2-duplication-syndrome\/"},"modified":"2023-04-18T07:52:31","modified_gmt":"2023-04-18T07:52:31","slug":"ocena-obciazenia-opiekunow-zespolem-duplikacji-mecp2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/ocena-obciazenia-opiekunow-zespolem-duplikacji-mecp2\/","title":{"rendered":"Ocena obci\u0105\u017cenia opiekun\u00f3w zespo\u0142em duplikacji MECP2"},"content":{"rendered":"<p><strong>Zesp\u00f3\u0142 duplikacji MECP2 (MDS) jest post\u0119puj\u0105cym zaburzeniem neurogenetycznym z niepe\u0142nosprawno\u015bci\u0105 intelektualn\u0105 i ruchow\u0105. Dzieci z tym zespo\u0142em nie mog\u0105 \u017cy\u0107 samodzielnie i w du\u017cym stopniu polegaj\u0105 na opiekunach, a w szczeg\u00f3lno\u015bci na swoich rodzicach.<\/strong><\/p>\n\n\n\n<p><strong>Dla tych ostatnich opieka nad dzieckiem z post\u0119puj\u0105c\u0105 niepe\u0142nosprawno\u015bci\u0105 mo\u017ce by\u0107 bardzo trudna zar\u00f3wno ze wzgl\u0119du na ci\u0105g\u0142e dostosowywanie opieki, jak i brak odpowiedniego wsparcia.<\/strong><\/p>\n\n\n\n<p><strong>Chocia\u017c jest to bardzo wa\u017cne, dobrostan opiekun\u00f3w cz\u0119sto nie jest uwa\u017cany za parametr poprawiaj\u0105cy stan zdrowia os\u00f3b z MDS. Ponadto zaj\u0119cie si\u0119 obci\u0105\u017ceniem opiekun\u00f3w mog\u0142oby nie tylko poprawi\u0107 stan zdrowia tej wra\u017cliwej populacji pacjent\u00f3w, ale tak\u017ce poprawi\u0107 jako\u015b\u0107 \u017cycia ich rodzin, co by\u0142oby korzystne dla ca\u0142ego spo\u0142ecze\u0144stwa.<\/strong><\/p>\n\n\n\n<p><strong>Po raz pierwszy dr Pehlivan i jego zesp\u00f3\u0142 zbadali obci\u0105\u017cenie opiekun\u00f3w pacjent\u00f3w z zespo\u0142em duplikacji MECP2. Najpierw opracowali skal\u0119 obci\u0105\u017cenia, aby oceni\u0107 skutki ci\u0105g\u0142ych wyzwa\u0144, przed kt\u00f3rymi staj\u0105 opiekunowie. Skala ta zosta\u0142a wykorzystana do zidentyfikowania korelacji mi\u0119dzy cechami MDS a zwi\u0119kszonym obci\u0105\u017ceniem. Badacze zidentyfikowali kilka czynnik\u00f3w, kt\u00f3re mog\u0105 przyczynia\u0107 si\u0119 do obci\u0105\u017cenia rodzic\u00f3w i ocenili ich wp\u0142yw za pomoc\u0105 skali obci\u0105\u017cenia. Badane czynniki obejmowa\u0142y dobrobyt finansowy, dost\u0119p do ekspert\u00f3w, odpowiednie leczenie, skr\u00f3cenie oczekiwanej d\u0142ugo\u015bci \u017cycia, op\u00f3\u017anienie test\u00f3w genetycznych oraz wyzwania zwi\u0105zane z cz\u0142onkami rodziny i \u017cyciem spo\u0142ecznym.<\/strong><\/p>\n\n\n\n<p><strong>W badaniu przeprowadzonym mi\u0119dzy wrze\u015bniem a listopadem 2020 r. wzi\u0119\u0142o udzia\u0142 101 opiekun\u00f3w z ca\u0142ego \u015bwiata. Wiek pacjent\u00f3w z MDS waha\u0142 si\u0119 od 1 do 51 lat.<\/strong><\/p>\n\n\n\n<p><strong>Badanie wykaza\u0142o, \u017ce:<\/strong><\/p>\n\n\n\n<p><strong>- Opieka nad pacjentami z MDS powoduje u opiekun\u00f3w niepok\u00f3j, wyczerpanie emocjonalne i depresj\u0119. Uczucia te przyczyniaj\u0105 si\u0119 do wysokiego wyniku obci\u0105\u017cenia.<\/strong><\/p>\n\n\n\n<p><strong>- Wykazano, \u017ce wynik obci\u0105\u017cenia wzrasta wraz z obecno\u015bci\u0105 padaczki u pacjenta z MDS. Nie stwierdzono znacz\u0105cego obci\u0105\u017cenia zwi\u0105zanego z zaparciami, infekcjami, mobilno\u015bci\u0105, wiekiem pacjenta z MDS lub opiekun\u00f3w ani czasem trwania opieki. Jednak\u017ce, chocia\u017c naukowcy pr\u00f3bowali zidentyfikowa\u0107 konkretne objawy lub obawy, nie mo\u017cna wykluczy\u0107, \u017ce po\u0142\u0105czenie wszystkich tych czynnik\u00f3w przyczynia si\u0119 do obci\u0105\u017cenia opiekuna.<\/strong><\/p>\n\n\n\n<p><strong>- Chocia\u017c istniej\u0105 znacz\u0105ce r\u00f3\u017cnice mi\u0119dzy systemami opieki zdrowotnej, rozmieszczenie geograficzne MDS i ich opiekun\u00f3w nie mia\u0142o wp\u0142ywu na wynik obci\u0105\u017cenia.<\/strong><\/p>\n\n\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\n\n<p><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>STRESZCZENIE PUBLIKACJI<\/strong><\/p>\n\n\n\n<p><strong>Kontekst:<\/strong> Zesp\u00f3\u0142 duplikacji MECP2 (MDS) jest rzadkim zaburzeniem neurogenetycznym charakteryzuj\u0105cym si\u0119 ci\u0119\u017ckimi zaburzeniami neurorozwojowymi, oporn\u0105 na leczenie padaczk\u0105, nawracaj\u0105cymi infekcjami i zaburzeniami czynno\u015bciowymi przewodu pokarmowego. Ze wzgl\u0119du na znacz\u0105ce problemy kliniczne i do\u017cywotni\u0105 niepe\u0142nosprawno\u015b\u0107 dzieci z tym zaburzeniem postawili\u015bmy hipotez\u0119, \u017ce obci\u0105\u017cenie rodzic\u00f3w\/opiekun\u00f3w tych dzieci jest znacz\u0105ce. Nie ma jednak doniesie\u0144 na temat wp\u0142ywu na opiekun\u00f3w os\u00f3b z MDS.<\/p>\n\n\n\n<p><strong>Metody:<\/strong> Opracowali\u015bmy i zwalidowali\u015bmy skal\u0119 obci\u0105\u017cenia w celu zbadania wyzwa\u0144 stoj\u0105cych przed opiekunami dzieci i doros\u0142ych z MDS oraz zidentyfikowali\u015bmy czynniki przyczyniaj\u0105ce si\u0119 do obci\u0105\u017cenia opiekun\u00f3w. Opracowali\u015bmy rejestr pacjent\u00f3w zgodny z ustaw\u0105 o przeno\u015bno\u015bci i odpowiedzialno\u015bci w ubezpieczeniach zdrowotnych dla rodzin z MDS i przeprowadzili\u015bmy ankiet\u0119 dotycz\u0105c\u0105 obci\u0105\u017cenia opiekun\u00f3w za po\u015brednictwem rejestru.<\/p>\n\n\n\n<p><strong>Wyniki:<\/strong> Spo\u015br\u00f3d 237 wype\u0142nionych ankiet, 101 kwalifikowa\u0142o si\u0119 do badania. Zidentyfikowali\u015bmy zwi\u0119kszony poziom postrzeganego przez siebie l\u0119ku, depresji i wyczerpania emocjonalnego u opiekun\u00f3w, kt\u00f3re korelowa\u0142y z wy\u017cszymi wynikami obci\u0105\u017cenia. Padaczka by\u0142a jedyn\u0105 cech\u0105 kliniczn\u0105, kt\u00f3ra powodowa\u0142a wi\u0119ksze obci\u0105\u017cenie u opiekun\u00f3w os\u00f3b z MDS. Ponadto, wy\u017csze obci\u0105\u017cenie stwierdzono u opiekun\u00f3w pochodzenia latynoskiego. Czas trwania opieki ujemnie korelowa\u0142 z wynikiem obci\u0105\u017cenia.<\/p>\n\n\n\n<p><strong>Wnioski:<\/strong> Jest to pierwsze badanie maj\u0105ce na celu zbadanie obci\u0105\u017cenia opiekun\u00f3w os\u00f3b z MDS i zidentyfikowanie kilku czynnik\u00f3w przyczyniaj\u0105cych si\u0119 do zwi\u0119kszonego obci\u0105\u017cenia. Rozwi\u0105zanie tych problem\u00f3w mo\u017ce potencjalnie poprawi\u0107 stan zdrowia os\u00f3b z MDS i przyczyni\u0107 si\u0119 do poprawy samopoczucia ich opiekun\u00f3w.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p><\/p>\n\n\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\">Do publikacji<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>","protected":false},"excerpt":{"rendered":"<p>MECP2 duplication syndrome (MDS) is a progressive neurogenetic disorder with both intellectual and motor disabilities. Children with the syndrome cannot live independently and highly rely on caregivers and in particular [&hellip;]<\/p>","protected":false},"author":1,"featured_media":11715,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[88],"tags":[],"class_list":["post-11751","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-publications-en"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Assessing the Burden on Caregivers of MECP2 Duplication Syndrome - 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-obciazenia-opiekunow-zespolem-duplikacji-mecp2\/?lang=en\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Assessing the Burden on Caregivers of MECP2 Duplication Syndrome - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"MECP2 duplication syndrome (MDS) is a progressive neurogenetic disorder with both intellectual and motor disabilities. 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