{"id":931,"date":"2013-08-30T12:37:46","date_gmt":"2013-08-30T10:37:46","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/36-europska-cf-konferencia-4-cast-postoje-pacientov-2\/201308"},"modified":"2014-01-01T12:23:29","modified_gmt":"2014-01-01T11:23:29","slug":"36-europska-cf-konferencia-4-cast-postoje-pacientov-2","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/36-europska-cf-konferencia-4-cast-postoje-pacientov-2\/931","title":{"rendered":"36. Eur\u00f3pska CF konferencia – 4.\u010das\u0165: Postoje pacientov"},"content":{"rendered":"

Prieskum o\u00a0 postoji pacientov k zav\u00e1dzaniu nov\u00fdch komunika\u010dn\u00fdch a pracovn\u00fdch met\u00f3d zalo\u017een\u00fdch na IT \u2013 telemedic\u00edny a elektronick\u00fdch zdravotn\u00fdch z\u00e1znamov.<\/p>\n

Prieskum o\u00a0 postoji pacientov k zav\u00e1dzaniu nov\u00fdch komunika\u010dn\u00fdch a pracovn\u00fdch met\u00f3d zalo\u017een\u00fdch na IT \u2013 telemedic\u00edny a elektronick\u00fdch zdravotn\u00fdch z\u00e1znamov (EHR \u2013 electronic health record) prezentoval John Wilson z Austr\u00e1lie. Austr\u00e1lia sa st\u00e1va v tejto oblasti priekopn\u00edckou krajinou, ke\u010f\u017ee ju k tomu predisponuje jednak potreba preklenutia ve\u013ek\u00fdch geografick\u00fdch vzdialenost\u00ed a na druhej strane priazniv\u00e9 podmienky vzh\u013eadom na vyspel\u00fa IT infra\u0161trukt\u00faru. John Wilson prezentoval \u0161pecializovan\u00fd software ur\u010den\u00fd na videokonferencie, ktor\u00fdch sa z\u00fa\u010dast\u0148uj\u00fa pacienti a t\u00edm CF \u0161pecialistov, ako aj syst\u00e9m zdie\u013eania klinick\u00fdch \u00fadajov do ktor\u00e9ho maj\u00fa pacienti on-line pr\u00edstup. Tieto syst\u00e9my s\u00fa sk\u00f4r v \u0161t\u00e1diu testovania a participuj\u00fa na nich iba t\u00ed pacienti, ktor\u00ed prejavili z\u00e1ujem. Medzi nimi uskuto\u010dnil Wilson prieskum, zameran\u00fd na hodnotenie ich sk\u00fasenost\u00ed s telemedic\u00ednou a EHR. Z prieskumu vyplynulo, \u017ee postoj pacientov bol pozit\u00edvny a s vyu\u017eit\u00edm nov\u00fdch technol\u00f3gii jednozna\u010dne preva\u017eovala spokojnos\u0165. Pozit\u00edvny postoj bol zaznamenan\u00fd naprie\u010d v\u0161etk\u00fdmi vekov\u00fdmi skupinami. V diskusii niektor\u00ed lek\u00e1ri vyslovili obavy, \u010di telemedic\u00edna nevedie k obmedzovaniu osobn\u00e9ho kontaktu medzi lek\u00e1rom a pacientom, resp. zn\u00ed\u017eeniu doh\u013eadu lek\u00e1rov nad pacientmi. John Wilson sa vyjadril, \u017ee\u00a0 tieto obavy nie s\u00fa opodstatnen\u00e9 a v s\u00fa\u010dastnosti je v Austr\u00e1lii telemedic\u00edna pova\u017eovan\u00e1 sk\u00f4r za ur\u010dit\u00fd nad\u0161tandard, ktor\u00fd m\u00e1 umo\u017eni\u0165 v pr\u00edpade potreby pre pacientov konzultova\u0165 ich zdravotn\u00fd stav s odborn\u00edkmi, ale nem\u00e1 nahr\u00e1dza\u0165 pravideln\u00e9 kontroly.<\/p>\n

In\u00fd prieskum medzi pacientmi prezentovala Kate Ferguson. Boli to \u010diastkov\u00e9 v\u00fdsledky prieskumu zorganizovan\u00e9ho Britsk\u00fdm Cystic Fibrosis Trust<\/a> (pri\u010dom \u00fapln\u00e9 v\u00fdsledky by mali by\u0165 v bl\u00edzkej dobe publikovan\u00e9 na webstr\u00e1nke CF Trustu), prieskum sa t\u00fdkal postojov pacientov k fyzioterapii a cvi\u010deniu. V r\u00e1mci tohto rozsiahleho prieskumu bolo osloven\u00fdch a\u017e 6119 pacientov\/rod\u00edn, pri\u010dom 23 % odoslalo odpove\u010f.<\/p>\n

Je vhodn\u00e9 spomen\u00fa\u0165, \u017ee v s\u00fa\u010dasnosti doch\u00e1dza k ur\u010dit\u00e9mu prehodnoteniu pr\u00edstupu medzi odborn\u00edkmi v t\u00fdchto oblastiach. V pr\u00edpade fyzioterapie je d\u00f4vodom n\u00edzka akceptovanos\u0165 pacientmi, vo forme v akej bola doteraz praktizovan\u00e1 a odpove\u010fou je snaha zmeni\u0165 jej formu. Snahou je pon\u00faknu\u0165 viac techn\u00edk odhlienenia a vo forme, ktor\u00e1 by pacientov menej za\u0165a\u017eovala a viac bavila. V pr\u00edpade cvi\u010denia je jednak snaha zapoji\u0165 ho do re\u017eimu odhlie\u0148ovania d\u00fdchac\u00edch ciest, ale tie\u017e \u00eds\u0165 aj na vy\u0161\u0161iu \u00farove\u0148. Doned\u00e1vna prevl\u00e1dal pr\u00edstup, ktor\u00fd s\u00edce jednozna\u010dne odpor\u00fa\u010dal CF pacientom cvi\u010di\u0165, ale pova\u017eovalo sa za pochopite\u013en\u00e9, \u017ee ciele alebo o\u010dak\u00e1van\u00fd v\u00fdkon by mali by\u0165 ni\u017e\u0161ie ako v zdravej popul\u00e1cii. Postupn\u00e9 zlep\u0161ovanie lie\u010dby a n\u00e1sledne zdravotn\u00e9ho stavu umo\u017enili pacientom venova\u0165 sa \u0161portu na vy\u0161\u0161ej \u00farovni, mnohokr\u00e1t \u00faspe\u0161ne v r\u00e1mci \u0161portov\u00fdch s\u00fa\u0165a\u017e\u00ed medzi zdrav\u00fdmi rovesn\u00edkmi. Preto v s\u00fa\u010dastnosti nie s\u00fa v tomto smere pacienti \u201cobmedzovan\u00ed\u201c, naopak pokia\u013e to ich zdravotn\u00fd stav umo\u017e\u0148uje odpor\u00fa\u010da sa im aby sa venovali \u0161portu intenz\u00edvnej\u0161ie. Z\u00e1rove\u0148 je dostatok vedeck\u00fdch d\u00f4kazov, \u017ee cvi\u010denie pri CF spoma\u013euje pokles p\u013e\u00facnych funkcii.<\/p>\n

V\u00fdskum potvrdil dlho zn\u00e1mu sk\u00fasenos\u0165, \u017ee pacienti maj\u00fa k fyzioterapii a technik\u00e1m odhlienenia d\u00fdchac\u00edch ciest rezervovan\u00fd pr\u00edstup. Iba 7 % dospel\u00fdch pacientov je presved\u010den\u00fdch, \u017ee fyzioterapia z\u00e1sadne zlep\u0161uje ich zdravotn\u00fd stav a oproti tomu v\u00fdrazne vn\u00edmaj\u00fa obmedzenia (najm\u00e4 \u010dasov\u00e9), ktor\u00e9 im prin\u00e1\u0161a.\u00a0 Z toho pochopite\u013ene vypl\u00fdva,\u00a0 \u017ee pacienti sa neprid\u0155\u017eaj\u00fa v tejto oblasti odpor\u00fa\u010dan\u00ed lek\u00e1rov a fyzioterapeutov a v r\u00f4znej miere \u010das\u0165 terapie vynech\u00e1vaj\u00fa. Tak v pr\u00edpade fyzioterapie ako aj pri cvi\u010den\u00ed sa uk\u00e1zalo, \u017ee viac sa ofici\u00e1lnych odpor\u00fa\u010dan\u00ed pr\u00edd\u0155\u017eaj\u00fa deti ako dospel\u00ed. 76 % dospel\u00fdch pacientov uviedlo, \u017ee pravidelne cvi\u010dia a 22 % cvi\u010d\u00ed intenz\u00edvne \u2013 bu\u010f ka\u017ed\u00fd de\u0148 alebo na s\u00fa\u0165a\u017enej \u00farovni. 3 % sa vyjadrili, \u017ee necvi\u010dia v\u00f4bec. Na rozdiel od fyzioterapie je postoj k cvi\u010deniu medzi pacientmi pozit\u00edvny (hodnot\u00ed ho tak 84 % det\u00ed a 55 % dospel\u00fdch) a v\u00e4\u010d\u0161ina uviedla, \u017ee na sebe c\u00edtia pozit\u00edvne zdravotn\u00e9 d\u00f4sledky cvi\u010denia.<\/p>\n

Nieko\u013eko prezent\u00e1cii sa na konferencii venovalo psychologick\u00fdm t\u00e9mam. Klinick\u00e1 depresia sa pova\u017euje za v\u00fdznamn\u00fa komplik\u00e1ciu CF (rovnako ako pri mnoh\u00fdch in\u00fdch v\u00e1\u017enych chronick\u00fdch ochoreniach), najm\u00e4 vo vy\u0161\u0161om veku.<\/p>\n

\"postoje_pacientov\"<\/div>\n

 <\/p>\n

V\u00e4\u010d\u0161ina CF centier vo vyspel\u00fdch krajin\u00e1ch m\u00e1 k dispozicii pre pacientov klinick\u00e9ho psychol\u00f3ga. Rozsah psychologick\u00fdch probl\u00e9mov, s ktor\u00fdmi sa stret\u00e1vaj\u00fa je v\u0161ak pochopite\u013ene \u0161ir\u0161\u00ed ako len samotn\u00e1 klinick\u00e1 depresia. CF pacienti napr\u00edklad musia \u010dasto robi\u0165 z\u00e1sadn\u00e9 rozhodnutia, ako je napr\u00edklad transplant\u00e1cia p\u013e\u00fac, o ktor\u00fdch maj\u00fa probl\u00e9m s niek\u00fdm d\u00f4verne sa poradi\u0165, ke\u010f\u017ee spravidla nikto v ich okol\u00ed v podobnej situ\u00e1cii nebol. Tak\u00fdto modelov\u00fd pr\u00edklad prezentovala Francis Hollander z univerzitn\u00e9ho medic\u00ednskeho centra v Utrechte, ktor\u00e1 pribl\u00ed\u017eila psychologick\u00e9 prek\u00e1\u017eky, ktor\u00fdm \u010delila 28 ro\u010dn\u00e1 pacientka \u010dakaj\u00faca na transplant\u00e1ciu p\u013e\u00fac. Rozhodnutie o transplant\u00e1cii, aj ke\u010f je to v ich pokro\u010dilom \u0161t\u00e1diu ochorenia pre pacientov jedin\u00e1 mo\u017enos\u0165 pred\u013a\u017eenia \u017eivota v\u00f4bec nezvykne by\u0165 jednoduch\u00e9. \u010cast\u00e1 je neochota prizna\u0165 si, \u017ee zdravotn\u00fd stav je u\u017e tak\u00fd zl\u00fd, \u017ee je potrebn\u00e1 transplant\u00e1cia. Taktie\u017e by\u0165 na \u010dakacom liste je permanentne stresuj\u00faca situ\u00e1cia, ke\u010f\u017ee pacient mus\u00ed by\u0165 pripraven\u00fd kedyko\u013evek v rozp\u00e4t\u00ed nieko\u013ek\u00fdch hod\u00edn po tom ako sa vyskytne vhodn\u00fd darca podst\u00fapi\u0165 transplanta\u010dn\u00fd z\u00e1krok. Samotn\u00fd z\u00e1krok prin\u00e1\u0161a samozrejme ur\u010dit\u00e9 rizik\u00e1 a aj ke\u010f pacienti sa c\u00edtia po transplant\u00e1cii lep\u0161ie, prib\u00fadaj\u00fa im niektor\u00e9 nov\u00e9 obmedzenia. V tomto konkr\u00e9tnom pr\u00edpade bola poz\u00edcia pacientky zlo\u017eit\u00e1 aj z \u010fal\u0161\u00edch d\u00f4vodov.\u00a0 Bol to nedostatok priate\u013eov, ktor\u00ed by ju mohli podpori\u0165 a dokonca skeptick\u00fd postoj rodiny, ktor\u00e1 bola muslimsk\u00e9ho p\u00f4vodu, pri\u010dom org\u00e1nov\u00e9 transplant\u00e1cie s\u00fa zna\u010dnou \u010das\u0165ou muslimov odmietan\u00e9.<\/p>\n","protected":false},"excerpt":{"rendered":"

Prieskum o  postoji pacientov k zavádzaniu nových komunikačných a pracovných metód založených na IT – telemedicíny a elektronických zdravotných záznamov. Prieskum o  postoji pacientov k zavádzaniu nových komunikačných a pracovných metód založených na IT – telemedicíny a elektronických zdravotných záznamov … Continued<\/a><\/p>\n","protected":false},"author":7,"featured_media":986,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[2],"tags":[257],"class_list":["post-931","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-informacie","tag-konferencia"],"yoast_head":"\n36. 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