{"id":42310,"date":"2023-09-21T06:56:04","date_gmt":"2023-09-21T04:56:04","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=42310"},"modified":"2023-09-21T06:56:05","modified_gmt":"2023-09-21T04:56:05","slug":"potreby-pacientu-s-lupenkou-zustavaji-nenaplnene-upozornuji-iniciativy-epicensus","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=42310","title":{"rendered":"POT\u0158EBY PACIENT\u016e S\u00a0LUP\u00c9NKOU Z\u016eST\u00c1VAJ\u00cd NENAPLN\u011aN\u00c9, UPOZOR\u0147UJ\u00cd INICIATIVY EPICENSUS"},"content":{"rendered":"\n

P\u00e9\u010de o nemocn\u00e9 s\u00a0lup\u00e9nkou je st\u00e1le nedosta\u010duj\u00edc\u00ed, a to i navzdory vysoce \u00fa\u010dinn\u00fdm a bezpe\u010dn\u00fdm prepar\u00e1t\u016fm, kter\u00e9 jsou pro l\u00e9\u010dbu tohoto chronick\u00e9ho onemocn\u011bn\u00ed k\u00a0dispozici. Lid\u00e9 s\u00a0psori\u00e1zou se k\u00a0adekv\u00e1tn\u00ed terapii dost\u00e1vaj\u00ed s\u00a0mnohalet\u00fdm zpo\u017ed\u011bn\u00edm, nejsou dostate\u010dn\u011b aktivn\u011b zapojeni do l\u00e9\u010debn\u00e9ho procesu a l\u00e9\u010dba mnohdy nezohled\u0148uje jejich individu\u00e1ln\u00ed pot\u0159eby. Takov\u00e9 jsou n\u011bkter\u00e9 ze z\u00e1v\u011br\u016f celoevropsk\u00e9 iniciativy Epicensus, kter\u00e1 se zam\u011b\u0159ila na celkov\u00e9 pojet\u00ed psori\u00e1zy. Jej\u00edm c\u00edlem bylo nejen zmapovat p\u00e9\u010di o pacienty s\u00a0psori\u00e1zou, ale tak\u00e9 podn\u00edtit ke zv\u00fd\u0161en\u00ed jej\u00ed \u00farovn\u011b prost\u0159ednictv\u00edm jasn\u011b stanoven\u00fdch krok\u016f.<\/strong><\/p>\n\n\n\n

Studie uv\u00e1d\u00ed celkem osm oblast\u00ed, ve kter\u00fdch je p\u00e9\u010de o pacienty s psori\u00e1zou nedosta\u010duj\u00edc\u00ed, a navrhuje konkr\u00e9tn\u00ed kroky pro zlep\u0161en\u00ed kvality \u017eivota nemocn\u00fdch.<\/p>\n\n\n\n

Jedn\u00edm z velk\u00fdch t\u00e9mat p\u00e9\u010de o osoby s psori\u00e1zou je v\u010dasn\u00fd p\u0159\u00edstup k efektivn\u00ed l\u00e9\u010db\u011b, zejm\u00e9na pak k biologick\u00fdm prepar\u00e1t\u016fm zastavuj\u00edc\u00edm patologick\u00e9 z\u00e1n\u011btliv\u00e9 procesy v organismu, kter\u00e9 vedou k projev\u016fm lup\u00e9nky. \u201eZah\u00e1jen\u00ed l\u00e9\u010dby vysoce \u00fa\u010dinn\u00fdmi inovativn\u00edmi terapeutiky v ran\u00e9 f\u00e1zi onemocn\u011bn\u00ed p\u0159itom pr\u016fkazn\u011b nejen zlep\u0161uje kvalitu \u017eivota psoriatik\u016f, ale m\u00e1 tak\u00e9 neoddiskutovateln\u00fd ekonomick\u00fd p\u0159\u00ednos v podob\u011b sn\u00ed\u017een\u00fdch n\u00e1klad\u016f na zdravotn\u00ed p\u00e9\u010di,\u201c uvedl v odborn\u00e9m \u010dasopise \u010cesko-slovensk\u00e1 dermatologie k z\u00e1v\u011br\u016fm iniciativy Epicensus profesor MUDr. Petr Arenberger, DrSc., MBA, p\u0159ednosta Dermatologick\u00e9 kliniky Fakultn\u00ed nemocnice Kr\u00e1lovsk\u00e9 Vinohrady<\/strong>.<\/p>\n\n\n\n

V souvislosti s mo\u017en\u00fdm v\u00fdskytem p\u0159idru\u017een\u00fdch onemocn\u011bn\u00ed, jako je metabolick\u00fd syndrom nebo Crohnova choroba, iniciativa rovn\u011b\u017e zd\u016fraz\u0148uje pot\u0159ebu multidisciplin\u00e1rn\u00edho p\u0159\u00edstupu k l\u00e9\u010db\u011b psori\u00e1zy. \u201e\u017d\u00e1douc\u00ed je zejm\u00e9na bl\u00edzk\u00e1 spolupr\u00e1ce dermatologa a revmatologa, do p\u00e9\u010de by nicm\u00e9n\u011b m\u011bli b\u00fdt zapojen\u00ed tak\u00e9 internist\u00e9, gastroenterologov\u00e9, v p\u0159\u00edpad\u011b pacientek v reproduk\u010dn\u00edm v\u011bku lze uva\u017eovat tak\u00e9 o koordinaci s gynekologem,\u201c vyjmenov\u00e1v\u00e1 profesor Arenberger<\/strong> specializace, kter\u00e9 je vhodn\u00e9 zapojit do komplexn\u00ed p\u00e9\u010de o nemocn\u00e9.<\/p>\n\n\n\n

Bolestiv\u00e9 a n\u00e1padn\u00e9 ko\u017en\u00ed l\u00e9ze, kter\u00e9 okol\u00ed \u010dasto myln\u011b pova\u017euje za infek\u010dn\u00ed, jsou pro osoby s lup\u00e9nkou \u010dasto zdrojem stresu nebo \u00fazkosti. Pacient\u016fm, kte\u0159\u00ed se vlivem psori\u00e1zy pot\u00fdkaj\u00ed s psychick\u00fdmi obt\u00ed\u017eemi, by proto m\u011bla b\u00fdt v r\u00e1mci komplexn\u00ed l\u00e9\u010dby z\u00e1rove\u0148 dostupn\u00e1 tak\u00e9 psychologick\u00e1 podpora.<\/p>\n\n\n\n

Velk\u00fdm p\u0159\u00ednosem by pro pacienty bylo tak\u00e9 aktivn\u011bj\u0161\u00ed zapojen\u00ed do l\u00e9\u010debn\u00e9ho procesu: \u201eJe d\u016fle\u017eit\u00e9, aby se lid\u00e9 s psori\u00e1zou neost\u00fdchali se sv\u00fdm l\u00e9ka\u0159em otev\u0159en\u011b mluvit o sv\u00fdch pot\u0159eb\u00e1ch a o\u010dek\u00e1v\u00e1n\u00edch spojen\u00fdch s l\u00e9\u010dbou,\u201c podot\u00fdk\u00e1 prezident pacientsk\u00e9 organizace SPAE Ing. Josef Poh\u016fnek<\/strong>. Pr\u00e1v\u011b SPAE, kter\u00e1 sdru\u017euje nemocn\u00e9 s lup\u00e9nkou a atopickou dermatitidou, na t\u00e9ma aktivn\u00edho p\u0159\u00edstupu k l\u00e9\u010db\u011b lup\u00e9nky ned\u00e1vno uspo\u0159\u00e1dala specializovan\u00fd webin\u00e1\u0159.<\/p>\n\n\n\n

\u201eSpolu\u00fa\u010dast na volb\u011b terapeutick\u00e9ho postupu by samoz\u0159ejm\u011b m\u011bla j\u00edt ruku v ruce s dodr\u017eov\u00e1n\u00edm nastaven\u00e9ho l\u00e9\u010debn\u00e9ho re\u017eimu,\u201c vyzdvihuje Josef Poh\u016fnek dal\u0161\u00ed aspekt aktivn\u00edho zapojen\u00ed pacient\u016f.<\/p>\n\n\n\n

Hlavn\u00edm m\u011b\u0159\u00edtkem \u00fasp\u011b\u0161nosti l\u00e9\u010dby by podle iniciativy Epicensus m\u011bla b\u00fdt kvalita \u017eivota osob s lup\u00e9nkou. Jej\u00ed zv\u00fd\u0161en\u00ed p\u0159edstavuje nejen p\u0159\u00ednos pro pacienta. Pozitivn\u011b se odr\u00e1\u017e\u00ed tak\u00e9 v jeho vztaz\u00edch s bl\u00edzk\u00fdmi, v jeho pracovn\u00edm a spole\u010densk\u00e9m \u017eivot\u011b, a p\u0159edstavuje tak\u00e9 \u00faspory v oblasti \u010derp\u00e1n\u00ed zdravotn\u00ed p\u00e9\u010de.<\/p>\n\n\n\n

Iniciativa Epicensus proto bude apelovat na instituce i zdravotnickou obec na celoevropsk\u00e9 i n\u00e1rodn\u00ed \u00farovni, aby podnikly konkr\u00e9tn\u00ed zm\u011bny vedouc\u00ed ke zlep\u0161en\u00ed p\u00e9\u010de o nemocn\u00e9 s psori\u00e1zou.<\/p>\n\n\n\n

O iniciativ\u011b Epicensus:<\/strong><\/p>\n\n\n\n

Epicensus je celoevropsk\u00e1 konsenzu\u00e1ln\u00ed iniciativa, jej\u00edm\u017e c\u00edlem je zv\u00fd\u0161it standard p\u00e9\u010de o osoby s psori\u00e1zou. Studie, kterou zve\u0159ejnil \u010dasopis Dermatology and Therapy, p\u0159edstavuje z\u00e1v\u011bry odborn\u00e9 diskuse zah\u00e1jen\u00e9 v prosinci 2020, j\u00ed\u017e se z\u00fa\u010dastnilo 10 l\u00e9ka\u0159\u016f, 5 pacient\u016f a 3 subjekty, kter\u00e9 projekt financovaly.<\/p>\n\n\n\n

O lup\u00e9nce:<\/strong><\/p>\n\n\n\n

Lup\u00e9nka neboli psori\u00e1za je chronick\u00e9 autoimunitn\u00ed z\u00e1n\u011btliv\u00e9 onemocn\u011bn\u00ed s \u010d\u00e1ste\u010dn\u011b d\u011bdi\u010dn\u00fdm z\u00e1kladem. V \u010cesk\u00e9 republice \u017eije s psori\u00e1zou p\u0159ibli\u017en\u011b 250-300 tis\u00edc osob. Nemoc nelze vyl\u00e9\u010dit, prost\u0159ednictv\u00edm vysoce \u00fa\u010dinn\u00fdch prepar\u00e1t\u016f je mo\u017en\u00e9 tlumit jej\u00ed projevy. Nej\u00fa\u010dinn\u011bj\u0161\u00ed zp\u016fsob l\u00e9\u010dby lo\u017eiskov\u00e9 psori\u00e1zy, kter\u00e1 je nejroz\u0161\u00ed\u0159en\u011bj\u0161\u00ed formou lup\u00e9nky, i prevenci p\u0159idru\u017een\u00fdch onemocn\u011bn\u00ed, p\u0159edstavuj\u00ed v sou\u010dasnosti biologick\u00e9 p\u0159\u00edpravky.<\/p>\n\n\n\n

Informace o nejmodern\u011bj\u0161\u00edch zp\u016fsobech l\u00e9\u010dby psori\u00e1zy naleznou pacienti i jejich bl\u00edzc\u00ed na webov\u00fdch str\u00e1nk\u00e1ch www.lupenkapodkontrolou.cz<\/a>. Velk\u00fd prostor web v\u011bnuje ot\u00e1zce efektivn\u00ed komunikace mezi pacientem a l\u00e9ka\u0159em, nab\u00edz\u00ed odpov\u011bdi na \u010dasto kladen\u00e9 ot\u00e1zky souvisej\u00edc\u00ed s psori\u00e1zou a p\u0159ehled center pro jej\u00ed l\u00e9\u010dbu. <\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

P\u00e9\u010de o nemocn\u00e9 s\u00a0lup\u00e9nkou je st\u00e1le nedosta\u010duj\u00edc\u00ed, a to i navzdory vysoce \u00fa\u010dinn\u00fdm a bezpe\u010dn\u00fdm prepar\u00e1t\u016fm, kter\u00e9 jsou pro l\u00e9\u010dbu tohoto chronick\u00e9ho onemocn\u011bn\u00ed k\u00a0dispozici. Lid\u00e9 […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":17871,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-42310","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\/42310","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=42310"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/42310\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/17871"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=42310"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=42310"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=42310"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}