{"id":49513,"date":"2024-06-03T05:15:30","date_gmt":"2024-06-03T03:15:30","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=49513"},"modified":"2024-06-03T05:15:44","modified_gmt":"2024-06-03T03:15:44","slug":"neurologove-vsichni-pacienti-s-rs-musi-dostat-kvalitni-peci","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=49513","title":{"rendered":"Neurologov\u00e9: V\u0161ichni pacienti s RS mus\u00ed dostat kvalitn\u00ed p\u00e9\u010di"},"content":{"rendered":"\n

Pomohou nov\u00e9 standardy a registr ReMuS<\/em><\/p>\n\n\n\n

Pokud \u010dlov\u011bk onemocn\u00ed roztrou\u0161enou skler\u00f3zou (RS), nem\u011blo by z\u00e1le\u017eet na tom, zda \u017eije v\u00a0Chebu, Kol\u00edn\u011b nebo ve Fr\u00fddku M\u00edstku. Stejnou p\u00e9\u010di by m\u011bl dostat ve v\u0161ech centrech v\u00a0cel\u00e9 \u010cesk\u00e9 republice. D\u00edky Registru pacient\u016f s\u00a0roztrou\u0161enou skler\u00f3zou (ReMuS), kter\u00fd sleduje, jak jsou pacienti ve v\u0161ech 15 vysoce specializovan\u00fdch pracovi\u0161t\u00edch l\u00e9\u010deni, se da\u0159\u00ed p\u0159\u00edstup k\u00a0nemocn\u00fdm sladit. C\u00edlem neurolog\u016f je zajistit kvalitn\u00ed p\u00e9\u010di bez ohledu na to, kde pacienti \u017eij\u00ed \u2013 kv\u016fli tomu tak\u00e9 sepsali jasn\u00e1 pravidla. \u010cerstv\u00e1 data z\u00a0ReMuSu odborn\u00edci zve\u0159ej\u0148uj\u00ed tradi\u010dn\u011b p\u0159i\u00a0p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne roztrou\u0161en\u00e9 skler\u00f3zy, kter\u00fd p\u0159ipad\u00e1 na 30. kv\u011btna.<\/strong><\/p>\n\n\n\n

\u201eU tak v\u00e1\u017en\u00fdch nemoc\u00ed jako roztrou\u0161en\u00e1 skler\u00f3za bezesporu je, mus\u00edme zajistit komplexn\u00ed celo\u017eivotn\u00ed p\u00e9\u010di. Na jednu stranu nen\u00ed mo\u017en\u00e9 m\u00edt v\u00a0ka\u017ed\u00e9m m\u011bst\u011b vysoce specializovan\u00e9 centrum, z\u00e1rove\u0148 ale v\u0161ichni pacienti nemohou jezdit pouze do Prahy nebo Brna. \u0158e\u0161en\u00edm je tedy ur\u010dit\u00fd po\u010det specializovan\u00fdch center nap\u0159\u00ed\u010d celou republikou \u2013 ta ale mus\u00ed poskytovat srovnateln\u011b kvalitn\u00ed p\u00e9\u010di,\u201c<\/em> \u0159\u00edk\u00e1 odborn\u00e1 garantka registru ReMuS prof. MUDr. Dana Hor\u00e1kov\u00e1.<\/p>\n\n\n\n

\u201eRegistr n\u00e1m umo\u017e\u0148uje nahl\u00e9dnout pod pokli\u010dku toho, <\/em>co se kde p\u0159esn\u011b d\u011bje. <\/em>Porovn\u00e1n\u00ed cest sv\u00fdch pacient\u016f a pr\u016fb\u011bh jej\u00edch l\u00e9\u010dby s\u00a0ostatn\u00edmi, centra pozitivn\u011b motivuje. Pom\u00e1h\u00e1 srovnat jednotliv\u00e9 kroky tak, aby se nemocn\u00fdm dostalo v\u0161ude stejn\u00e9 a kvalitn\u00ed p\u00e9\u010de.\u201c <\/em>D\u00edky systematick\u00e9mu srovn\u00e1n\u00ed (benchmarkingu) dost\u00e1v\u00e1 ka\u017ed\u00e9 RS centrum zp\u011btnou vazbu o tom, jak funguje. Vid\u00ed nap\u0159\u00edklad, kolik pacient\u016f se vrac\u00ed pro tzv. relapsy \u2013 tedy op\u011btovn\u00e9 vzplanut\u00ed nemoci. \u201ePokud by m\u011blo jedno centrum za rok 2 % pacient\u016f, kte\u0159\u00ed se pro vzplanut\u00ed nemoci mus\u00ed vracet do nemocnice a druh\u00e9 50 %, je jasn\u00e9, \u017ee je zde n\u011bco \u0161patn\u011b,\u201c<\/em> vysv\u011btluje prof. Hor\u00e1kov\u00e1.<\/p>\n\n\n\n

Podle \u0159editele registru ReMuS Ing. Ji\u0159\u00edho Drahoty objevuje registr slab\u00e1 m\u00edsta ve zdravotn\u00edm syst\u00e9mu. Nap\u0159\u00edklad kdy\u017e z dat vyplyne, \u017ee centrum sice pacient\u016fm rychle nasad\u00ed l\u00e9\u010dbu, ale d\u00e9le trv\u00e1, ne\u017e se lid\u00e9 do RS centra v\u016fbec dostanou.<\/p>\n\n\n\n

Jedn\u00edm z\u00a0aktu\u00e1ln\u00edch krok\u016f, kter\u00e9 neurologov\u00e9 pro sjednocen\u00ed p\u00e9\u010de ud\u011blali, je vytvo\u0159en\u00ed doporu\u010den\u00fdch postup\u016f, jimi\u017e by se centra m\u011bla \u0159\u00eddit. \u201eTyto postupy vych\u00e1zej\u00ed z\u00a0nejnov\u011bj\u0161\u00edch v\u011bdeck\u00fdch poznatk\u016f a jejich c\u00edlem je podpo\u0159it zvy\u0161ov\u00e1n\u00ed kvality p\u00e9\u010de o nemocn\u00e9. Registr n\u00e1m pom\u00e1h\u00e1 zjistit, zda je centra opravdu n\u00e1sleduj\u00ed,\u201c <\/em>\u0159\u00edk\u00e1 vedouc\u00ed Centra pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed Neurologick\u00e9 kliniky 1. LF UK a VFN v\u00a0Praze prof. MUDr. Eva Kubala Havrdov\u00e1.<\/p>\n\n\n\n

Jako dal\u0161\u00ed p\u0159\u00edklad uv\u00e1d\u00ed aktu\u00e1ln\u00ed projekt, kdy ve spolupr\u00e1ci s\u00a0neuroradiology do\u0161lo ke sjednocen\u00ed protokolu, jak m\u00e1 prob\u00edhat magnetick\u00e1 rezonance (MR). \u201eKa\u017ed\u00e1 nemocnice m\u011bla sv\u016fj syst\u00e9m. Uk\u00e1zalo se, \u017ee n\u011bkte\u0159\u00ed pacienti pak nebyli spr\u00e1vn\u011b sledovan\u00ed. Nov\u00e9 postupy jasn\u011b \u0159\u00edkaj\u00ed, co u ka\u017ed\u00e9ho pacienta s\u00a0roztrou\u0161enou skler\u00f3zou p\u0159i MR d\u011blat a jak \u010dasto. Nyn\u00ed by v\u0161echna centra m\u011bla monitorovat nemocn\u00e9 s\u00a0pomoc\u00ed zobrazovac\u00edch metod stejn\u011b,\u201c<\/em> vysv\u011btluje prof. Havrdov\u00e1. V\u0161ech 15 center \u010dek\u00e1 v\u00a0p\u0159\u00ed\u0161t\u00edm roce proces, p\u0159i n\u011bm\u017e mus\u00ed znovu po\u017e\u00e1dat o certifikaci vysoce specializovan\u00e9ho pracovi\u0161t\u011b. Aby toto ozna\u010den\u00ed dostali, mus\u00ed l\u00e9\u010dit ur\u010dit\u00fd po\u010det pacient\u016f a m\u00edt dostate\u010dn\u00fd po\u010det erudovan\u00fdch l\u00e9ka\u0159\u016f, sester, fyzioterapeut\u016f \u010di psycholog\u016f. S nedostatkem t\u011bchto odborn\u00edk\u016f se p\u0159itom pot\u00fdkaj\u00ed v\u0161echna centra.<\/p>\n\n\n\n

O to, aby m\u011bli pacienti v centrech vysoce specializovan\u00e9 p\u00e9\u010de stejn\u00fd standard, usiluje i Ministerstvo zdravotnictv\u00ed \u010cR (MZ\u010cR). \u201eVytvo\u0159ili jsme metodick\u00fd pokyn, kter\u00fd jasn\u011b popisuje, co by m\u011blo pracovi\u0161t\u011b spl\u0148ovat, aby se mohlo vysoce specializovan\u00fdm centrem naz\u00fdvat. Tento statut nen\u00ed na do\u017eivot\u00ed \u2013 po \u010dase mus\u00ed pracovi\u0161t\u011b obh\u00e1jit, \u017ee spl\u0148uje to, co pacienti a pl\u00e1tci p\u00e9\u010de pot\u0159ebuj\u00ed. Proto v\u017edy p\u0159ed vypr\u0161en\u00edm term\u00ednu ud\u011bl\u00e1me inventuru, jak centrum funguje, zjist\u00edme, zda je v\u0161e v po\u0159\u00e1dku a co zlep\u0161it. D\u00edky tzv. indik\u00e1tor\u016fm kvality um\u00edme nav\u00edc jednotliv\u00e1 centra porovnat,\u201c <\/em>vysv\u011btlujeIng. Mgr. Venu\u0161e \u0160kampov\u00e1, \u0159editelka odboru zdravotn\u00ed p\u00e9\u010de MZ\u010cR. Center pro l\u00e9\u010dbu RS se tento proces bude t\u00fdkat p\u0159\u00ed\u0161t\u00ed rok.<\/p>\n\n\n\n

Registr nyn\u00ed sleduje 21 537 pacient\u016f (71,1 % \u017een a 28,9 % mu\u017e\u016f), co\u017e je v porovn\u00e1n\u00ed s rokem 2022 o p\u0159ibli\u017en\u011b 1 000 v\u00edce. Z toho 15 915 osob u\u017e\u00edv\u00e1 biologickou l\u00e9\u010dbu. P\u0159ibli\u017en\u011b t\u0159etina pacient\u016f m\u00e1 tzv. progresivn\u00ed formu nemoci. Pr\u016fm\u011brn\u00fd v\u011bk registrovan\u00fdch byl v dob\u011b za\u010d\u00e1tku onemocn\u011bn\u00ed necel\u00fdch 33 let. Nejv\u00edce pacient\u016f bylo z Prahy (3 161), nejm\u00e9n\u011b (465) pak z Karlovarsk\u00e9ho kraje. V\u00edce ne\u017e polovina (61,56 %) u\u017eivatel\u016f biologick\u00e9 l\u00e9\u010dby pracovala na pln\u00fd \u00favazek. Z t\u011bch, co biologickou l\u00e9\u010dbu neu\u017e\u00edvaj\u00ed, takov\u00fd \u00favazek zvl\u00e1d\u00e1 36,01 % lid\u00ed. \u201eV mezin\u00e1rodn\u00edm srovn\u00e1n\u00ed pat\u0159\u00ed ReMuS ke \u0161pi\u010dce. Data slou\u017e\u00ed v mnoha v\u00fdzkumn\u00fdch projektech, registr pom\u00e1h\u00e1 zmapovat nemoc jako takovou, umo\u017e\u0148uje posuzovat \u00fa\u010dinnost l\u00e9k\u016f, jejich bezpe\u010dnost. Pom\u00e1hal n\u00e1m tak\u00e9 reagovat v nenad\u00e1l\u00fdch situac\u00edch jako byl nap\u0159\u00edklad covid-19,\u201c<\/em> dod\u00e1v\u00e1 Ji\u0159\u00ed Drahota.<\/p>\n\n\n\n

O roztrou\u0161en\u00e9 skler\u00f3ze<\/strong><\/p>\n\n\n\n

Roztrou\u0161en\u00e1 skler\u00f3za (RS) je chronick\u00e9 z\u00e1n\u011btliv\u00e9 onemocn\u011bn\u00ed centr\u00e1ln\u00edho nervov\u00e9ho syst\u00e9mu, jeho\u017e p\u0159\u00ed\u010dina nen\u00ed doposud zn\u00e1m\u00e1. Toto onemocn\u011bn\u00ed propuk\u00e1 v\u011bt\u0161inou v mlad\u0161\u00edm v\u011bku, \u010dast\u011bji postihuje \u017eeny. Pro RS je typick\u00e9 st\u0159\u00edd\u00e1n\u00ed obdob\u00ed z\u00e1chvat\u016f (atak) a obdob\u00ed zd\u00e1nliv\u00e9ho klidu. Tento proces je nep\u0159edv\u00eddateln\u00fd, a proto i l\u00e9\u010dba \u010di prevence je t\u011b\u017ek\u00e1. Na cel\u00e9m sv\u011bt\u011b trp\u00ed RS 2,8 milionu nemocn\u00fdch, v \u010cesku se odhaduje po\u010det pacient\u016f na 26 tis\u00edc. Ka\u017ed\u00fd rok v \u010cesku p\u0159ibude 700 a\u017e 800 nemocn\u00fdch. Nemoc se vyskytuje p\u0159edev\u0161\u00edm ve st\u0159edn\u00edch a chladn\u011bj\u0161\u00edch zem\u011bpisn\u00fdch \u0161\u00ed\u0159k\u00e1ch. Rizikov\u00fdmi faktory nemoci jsou krom\u011b genetick\u00e9 dispozice EB virus (virus Epsteina-Barrov\u00e9), kou\u0159en\u00ed a nedostatek vitaminu D. O roztrou\u0161en\u00e9 skler\u00f3ze lze dohledat informace tak\u00e9 na www.rskompas.cz<\/a>.<\/p>\n\n\n\n

ReMuS, nada\u010dn\u00ed fond<\/strong><\/p>\n\n\n\n

Registr pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS) zalo\u017eil v roce 2013 Nada\u010dn\u00ed fond Impuls. ReMuS se pak osamotnil letos v dubnu. Jako jedin\u00fd celost\u00e1tn\u00ed registr v \u010cesk\u00e9 republice se zam\u011b\u0159uje na shroma\u017e\u010fov\u00e1n\u00ed kl\u00ed\u010dov\u00fdch informac\u00ed o roztrou\u0161en\u00e9 skler\u00f3ze a dal\u0161\u00edch neuroimunologick\u00fdch onemocn\u011bn\u00edch. Spolupracuje s odborn\u00fdmi centry po cel\u00e9 zemi a jeho data slou\u017e\u00ed nejen l\u00e9ka\u0159sk\u00e9 komunit\u011b pro v\u011bdeck\u00fd v\u00fdzkum, ale tak\u00e9 pacient\u016fm, kte\u0159\u00ed hledaj\u00ed lep\u0161\u00ed porozum\u011bn\u00ed sv\u00e9 nemoci a mo\u017enostem l\u00e9\u010dby. C\u00edlem registru ReMuS je p\u0159isp\u00edvat k soustavn\u00e9mu zlep\u0161ov\u00e1n\u00ed p\u00e9\u010de o pacienty prost\u0159ednictv\u00edm zaji\u0161\u0165ov\u00e1n\u00ed kl\u00ed\u010dov\u00fdch a spolehliv\u00fdch dat i anal\u00fdz. V\u00edce informac\u00ed na www.multiplesclerosis.cz<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

Pomohou nov\u00e9 standardy a registr ReMuS Pokud \u010dlov\u011bk onemocn\u00ed roztrou\u0161enou skler\u00f3zou (RS), nem\u011blo by z\u00e1le\u017eet na tom, zda \u017eije v\u00a0Chebu, Kol\u00edn\u011b nebo ve Fr\u00fddku M\u00edstku. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":1457,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-49513","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49513","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=49513"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49513\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/1457"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=49513"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=49513"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=49513"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}