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Öğe CLINICAL MANAGEMENT AND QUALITY OF LIFE IN PATIENTS WITH HOMOZYGOUS FAMILIAL HYPERCHOLESTEROLEMIA UNDERGOING LIPID-APHERESIS IN TURKEY: FIRST RESULTS OF A NATION-WIDE SURVEY (A-HIT REGISTRY)(ELSEVIER IRELAND LTD, 2016) Kayıkcıoğlu, Meral; Tokgözoğlu, Lale; Pırıldar, Şebnem; Yılmaz, Mahinur; Kaynar, Leylagül; Aktan, Melih; Durmuş, Rana Berru[Abstract not Available]Öğe Clinical management, psychosocial characteristics, and quality of life in patients with homozygous familial hypercholesterolemia undergoing LDL-apheresis in Turkey: Results of a nationwide survey (A-HIT1 registry)(ELSEVIER SCIENCE INC, 2019) Kayıkcıoğlu, Meral; Tunçel, Özlem Kuman; Pırıldar, Şebnem; Yılmaz, Mehmet; Kaynar, Leylagül; Aktan, Melih; Durmuş, Rana Berru; Gökçe, Cumali; Temizhan, Ahmet; Özcebe, Osman İlhami; Akyol, Tülay Karaağaç; Okutan, Harika; Sağ, Saim; Gül, Özen Öz; Salcıoğlu, Zafer; Yenerçağ, Mustafa; Altunkeser, Bülent Behlül; Kuku, İrfan; Yaşar, Hamiyet Yılmaz; Kurtoğlu, Erdal; Demir, Melis; Demircioğlu, Sinan; Pekkolay, Zafer; İlhan, Osman; Tokgözoğlu, LaleBACKGROUND: Homozygous familial hypercholesterolemia (HoFH) is a rare, life-threatening inherited disease leading to early-onset atherosclerosis and associated morbidity. Because of its rarity, longitudinal data on the management of HoFH in the real world are lacking, particularly on the impact the condition has on quality of life (QoL), including the impact of the extracorporeal lipid removal procedure apheresis (LA). METHODS: The A-HIT1 study included 88 patients with HoFH aged >= 12 years receiving regular LA in 19 centers in Turkey. Demographic and disease characteristics data were obtained. For patients aged >= 18 years, additional data on psychosocial status were obtained via the SF-36 score, the Hospital Anxiety and Depression Scale, and a HoFH-specific questionnaire. RESULTS: There was no standardized approach to therapy between centers. Mean (+/-SD) frequency of LA sessions was every 19.9 (+/-14) days, with only 11.6% receiving LA weekly, and 85% of patients were not willing to increase LA frequency. The most common concerns of patients were disease prognosis (31%), and physical, aesthetic, and psychological problems (27.5%, 15.9%, and 11.6%, respectively). Lower age at diagnosis was associated with better QoL, lower anxiety, improved functioning, and greater emotional well-being compared to later diagnosis. CONCLUSIONS: These findings demonstrate that adult patients with HoFH undergoing LA, experience significant impairment of QoL with an increased risk of depression. From patients' point of view, LA is time-consuming, uncomfortable, and difficult to cope with. The speed of diagnosis and referral has a considerable impact on patient well-being. (C) 2019 National Lipid Association. All rights reserved.Öğe Herediter anjioödemde kısa dönem danazol profilaksisi ile implant tedavisi: Vaka raporu(Selçuk Üniversitesi, 2019) Gönen, Zeynep Burçin; Doğruel, Fatma; Kaynar, Leylagül; Çetin, Mustafa; Asan, Canay YılmazHerediter anjioödem (HAÖ), C1 esteraz inhibitör proteininin konjenital eksikliğine bağlı olarak meydana gelen, nadir gözlenen, otozomal dominant bir hastalıktır. HAÖ atakları, spontan veya bir travmaya bağlı olarak, ekstremitelerde, yüzde, göğüste, hava yolunda veya karın bölgesinde şişlikler şeklinde meydana gelebilir. Dental işlemlerden önce, profilaksi amacıyla, androjenler, taze dondurulmuş plazma, C1 esteraz inhibitör protein konsantreleri ve antifibrinolitikler kullanılmaktadır. Bu vaka raporunda, danazol profilaksisi ile implant tedavisi uygulanan, herediter anjioödemli bir hasta sunulmaktadır. Preoperatif 3 gün 100 mg ve operasyon günü 200 mg danazol profilaksisi ile hastanın sol üst molar bölgesine bir adet dental implant yerleştirilmiş ve postoperatif 2 gün 100 mg danazol tedavisine devam edilmiştir. Hastada implant tedavisine bağlı olarak, akut veya post operatif herhangi bir atak görülmemiştir. Rekürrent anjio ödem hikayesi olan hastalar, dental implant cerrahisinden önce, C1 esteraz inhibitör protein eksikliği yönünden, dikkatle değerlendirilmelidir.dental tedavilerden önce danazol veya C1 inhibitörleri ile yapılan kısa dönem profilaksi uygulamaları, HAÖ hastalarında mortalite ve morbiditeyi azaltmakta oldukça faydalıdır.Öğe A nation-wide survey of patients with homozygous familial hypercholesterolemia undergoing lipoprotein-apheresis in Turkey (A-HIT Registry)(OXFORD UNIV PRESS, 2016) Kayıkcıoğlu, Meral; Tokgözoğlu, Lale; Yılmaz, Mehmet; Kaynar, Leylagül; Aktan, Melih; Durmuş, Rana Berru; Temizhan, Ahmet; Gökçe, Cumali; Özcebe, Osman İlhami; Akyol, Tülay Karaağaç; Okutan, Harika; Sağ, Saim; Gül, Özen Öz; Salcıoğlu, Zafer; Yenerçağ, Mustafa; Altunkeser, Bülent Behlül; Kuku, İrfan; Yaşar, Hamiyet Yılmaz; Kurtoğlu, Erdal; Köse, Melis Demir; İlhan, Osman[Abstract not Available]
