{"id":1439,"date":"2021-06-24T13:06:54","date_gmt":"2021-06-24T10:06:54","guid":{"rendered":"https:\/\/pharmaworlddergi.com\/?p=1439"},"modified":"2021-06-24T13:06:54","modified_gmt":"2021-06-24T10:06:54","slug":"hemofili","status":"publish","type":"post","link":"https:\/\/pharmaworlddergi.com\/?p=1439","title":{"rendered":"Hemofili \u00dczerine T\u00fcrkiye\u2019de Yap\u0131lan En Derinlikli Ara\u015ft\u0131rman\u0131n Sonu\u00e7lar\u0131 A\u00e7\u0131kland\u0131"},"content":{"rendered":"

Hemofilili bireylerin ihtiya\u00e7lar\u0131n\u0131 anlamak ve kar\u015f\u0131lamak \u00fczere T\u00fcrkiye\u2019de yap\u0131lan en derinlikli ara\u015ft\u0131rman\u0131n sonu\u00e7lar\u0131 kamuoyu ile payla\u015f\u0131ld\u0131. Ara\u015ft\u0131rma, d\u00fcnyada 32 y\u0131l, T\u00fcrkiye\u2019de 20 y\u0131ld\u0131r hemofili \u00fczerine \u00e7al\u0131\u015fmalar y\u00fcr\u00fcten Novo Nordisk\u2019in hemofiliye odakl\u0131 yol haritas\u0131 olu\u015fturmak i\u00e7in ba\u015flatt\u0131\u011f\u0131 \u2018D\u00fcnden Yar\u0131na Hemofilinin Yan\u0131nda\u2019 projesi kapsam\u0131nda IPSOS taraf\u0131ndan ger\u00e7ekle\u015ftirildi.<\/em><\/strong><\/p>\n

D\u00fcnyada 32 y\u0131ld\u0131r, T\u00fcrkiye\u2019de ise 20 y\u0131ld\u0131r hemofili \u00fczerine \u00e7al\u0131\u015fmalar y\u00fcr\u00fcten Novo Nordisk, hemofilili bireylerin ihtiya\u00e7lar\u0131n\u0131 anlay\u0131p, kar\u015f\u0131lamaya y\u00f6nelik yol haritas\u0131 olu\u015fturmak amac\u0131 ile \u2018D\u00fcnden Yar\u0131na Hemofilinin Yan\u0131nda\u2019 projesini hayata ge\u00e7irdi. Projenin ilk ad\u0131m\u0131 olarak IPSOS ara\u015ft\u0131rma \u015firketi taraf\u0131ndan derinlikli g\u00f6r\u00fc\u015fmeler ve odak grup \u00e7al\u0131\u015fmalar\u0131ndan olu\u015fan bir ara\u015ft\u0131rma ger\u00e7ekle\u015ftirildi.<\/p>\n

\u2018D\u00fcnden Yar\u0131na Hemofilinin Yan\u0131nda\u2019 projesinin ilk ad\u0131m\u0131 olan ara\u015ft\u0131rma, hemofili konusunda \u00fclkemizde yap\u0131lm\u0131\u015f, hemofilili bireylerin ihtiya\u00e7lar\u0131na odakl\u0131 ve en derin kalitatif ara\u015ft\u0131rma olma \u00f6zelli\u011fini ta\u015f\u0131yor.<\/p>\n

\"\"<\/em>Prof. Dr. Ahmet Muzaffer Demir, Prof. Dr. B\u00fclent Antmen, Prof. Dr. B\u00fclent Z\u00fclfikar, Prof. Dr. Cem Ar, Prof. Dr. Fahri \u015eahin <\/strong>ve Prof. Dr. Kaan Kavakl\u0131<\/strong> dan\u0131\u015fmanl\u0131\u011f\u0131nda y\u00fcr\u00fct\u00fclen \u00e7al\u0131\u015fmada her ya\u015f grubunun ihtiya\u00e7 analizlerinin ger\u00e7ekle\u015ftirilmesi hedeflendi. Her ya\u015f grubu i\u00e7in ihtiya\u00e7lara y\u00f6nelik \u00e7\u00f6z\u00fcm \u00f6nerilerinin ortaya konmas\u0131 ama\u00e7land\u0131.<\/p>\n

\u2018D\u00fcnden Yar\u0131na Hemofilinin Yan\u0131nda\u2019 projesinin hemofili hastalar\u0131n\u0131 ya\u015fam\u0131n i\u00e7inde tutmak i\u00e7in \u00f6nemli bir ad\u0131m olarak g\u00f6ze \u00e7arp\u0131yor. Daha iyi tedavi ve kontrol ile hemofili hastalar\u0131n\u0131n hayat kalitelerini iyile\u015ftirecek sonu\u00e7lar alman\u0131n m\u00fcmk\u00fcn oldu\u011funa de\u011finen uzmanlar, koruyucu tedaviler sayesinde hastalar\u0131n hayatlar\u0131n\u0131, sosyal aktivitelerini k\u0131s\u0131tlamalar\u0131na gerek kalmad\u0131\u011f\u0131n\u0131n alt\u0131n\u0131 \u00e7iziyor. Hemofilili bireylerin, ya\u015fam\u0131n i\u00e7inde olabilmeleri i\u00e7in spordan sanata pek \u00e7ok faaliyette yer almalar\u0131 tavsiye ediliyor.<\/p>\n

Hemofili hastalar\u0131n\u0131n tedavilerini aksatmad\u0131\u011f\u0131 s\u00fcrece ya\u015famlar\u0131na \u00e7ok daha kaliteli bir \u015fekilde devam etmeleri m\u00fcmk\u00fcn. G\u00fcn\u00fcm\u00fczde hastalar\u0131n tamam\u0131 sosyal g\u00fcvence kapsam\u0131nda ve \u00e7o\u011fu koruma tedavisi al\u0131yor. Ya\u015f\u0131 15’ten k\u00fc\u00e7\u00fck olan hemofilili bireylerde, eklem problemi s\u0131kl\u0131\u011f\u0131n\u0131n olduk\u00e7a azald\u0131\u011f\u0131 g\u00f6zlemlenirken, gen\u00e7 hemofili hastalar\u0131n\u0131n okullar\u0131na ve e\u011fitimlerine rahat\u00e7a devam edip hayata kar\u0131\u015fabilmeleri mutluluk veriyor.\u00a0\u00c7ok say\u0131da hemofili hastas\u0131n\u0131n i\u015f sahibi oldu\u011funu ve ailesini kurdu\u011funu memnuniyetle g\u00f6zlemlediklerini belirten uzmanlar, \u201cBu projenin de s\u00fcrece katk\u0131 sa\u011flayaca\u011f\u0131na inan\u0131yoruz\u201d de\u011ferlendirmesini yapt\u0131.<\/p>\n

Ya\u015f gruplar\u0131na g\u00f6re temel ihtiya\u00e7lar tespit edildi ve \u00e7\u00f6z\u00fcm \u00f6nerileri sunuldu<\/em><\/strong><\/p>\n

Hemofili \u00e7emberinde yer alan payda\u015flar aras\u0131nda s\u00fcrd\u00fcr\u00fclebilir ve ileriye d\u00f6n\u00fck planlamalar yap\u0131lmas\u0131 ama\u00e7lanan ara\u015ft\u0131rma kapsam\u0131nda 6 derinlemesine g\u00f6r\u00fc\u015fme ve 10 odak grup \u00e7al\u0131\u015fmas\u0131 yap\u0131ld\u0131. Odak grup g\u00f6r\u00fc\u015fmeleri 4\u2019er ki\u015filik gruplarla y\u00fcr\u00fct\u00fcld\u00fc. 12-18 ya\u015f aras\u0131 bireylerden daha derinlemesine ve detayl\u0131 i\u00e7 g\u00f6r\u00fcler alabilmek i\u00e7in anne babalar\u0131yla m\u00fclakata kat\u0131lmalar\u0131 sa\u011fland\u0131.<\/p>\n

Ara\u015ft\u0131rma sonucunda 0-1 Ya\u015f Temel Sorunlar\u0131; te\u015fhiste gecikmeler\/s\u0131k\u0131nt\u0131lar, pediatrik hematolo\u011fun hastal\u0131\u011f\u0131 te\u015fhisi ve aileye hemofilinin anlat\u0131lmas\u0131, ailenin ilk \u015foku atlatmas\u0131na ve kabul a\u015famas\u0131na kadar olan s\u00fcrede hastal\u0131\u011f\u0131n anla\u015f\u0131lmas\u0131nda ve y\u00f6netilmesinde ya\u015fanan sorunlar ve ila\u00e7 uygulama sorunlar\u0131 bebe\u011fin damar yolunu bulma olarak tan\u0131mland\u0131. Buna kar\u015f\u0131l\u0131k Hemofili Merkezleri\u2019ni yayg\u0131nla\u015ft\u0131rmak, hemofili dostu aile hekimleri ve hemofili ya\u015fam ko\u00e7lar\u0131 \u00f6nerileri geli\u015ftirildi.<\/p>\n