Opinions of Turkish Hereditary Angioedema Patients Regarding the Use of C1 Inhibitor Concentrate in the Treatment of Acute Attacks

IF 0.3 Q4 ALLERGY
S. Demir, M. Olgac, Derya Unal, Raif Coşkun, A. Gelincik, B. Çolakoğlu, S. Büyüköztürk
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引用次数: 1

Abstract

Objective: No data exists about the perceptions of Turkish hereditary angioedema patients regarding the use of C1 inhibitor concentrate that has been used in the treatment of acute attacks for the last 7 years. Our aim was to evaluate patient opinions about the C1 inhibitor (C1-inh) concentrate and determine the level of satisfaction with this drug. Materials and Methods: Fifty-seven hereditary angioedema (HAE) patients who used C1-inh concentrate for their angioedema attacks were asked to complete a questionnaire which contained various questions related to demographic information, clinical features, and experiences with C1-inh concentrate use. Results: Sixty-five % of the patients were female and 94.7% of the patients had type 1 HAE. The mean curent age and age of diagnosis were 38.11±12.6 and 29.95±13.85 years, respectively. Thirteen patients did not have a family history. Forty patients were under prophylaxis (danazol n=39, tranexamic acid= 1). The mean duration of the C1-inh concentrate usage was 4.07±1.76 years. The patients had taken this drug 6 times over the past year on average. All patients stated that they experienced difficulties during injections with this medication in the emergency units due to a lack of awareness by health care professionals regarding both HAE and C1-inh concentrate. While 61.4% of the patients reported overall satisfaction about the efficacy of drug, 43.8% stated that this medication should have a more practical application; 52.6% proposed that the drug should be more accessible in hospital emergency rooms. Conclusion: Patients with HAE generally considered that C1-inh concentrate was effective in their attacks. However, this group of patients expressed concerns related to the medical personnel’s awareness about HAE as well as access to the medication.
土耳其遗传性血管性水肿患者使用C1抑制剂治疗急性发作的意见
目的:没有关于土耳其遗传性血管性水肿患者对过去7年来用于治疗急性发作的C1抑制剂浓缩物的看法的数据。我们的目的是评估患者对C1抑制剂(C1-inh)浓缩物的意见,并确定对该药物的满意度。材料和方法:57名使用C1-inh浓缩液治疗血管性水肿的遗传性血管性水肿(HAE)患者被要求填写一份问卷,其中包含与人口统计学信息、临床特征和使用C1-inn浓缩液的经验有关的各种问题。结果:65%的患者为女性,94.7%的患者为1型HAE。平均年龄38.11±12.6岁,平均诊断年龄29.95±13.85岁。13名患者没有家族史。40名患者正在接受预防治疗(达那唑n=39,氨甲环酸=1)。C1-inh浓缩液的平均使用时间为4.07±1.76年。在过去的一年中,患者平均服用这种药物6次。所有患者都表示,由于卫生保健专业人员对HAE和C1-inh浓缩物缺乏认识,他们在急诊室注射该药物时遇到了困难。61.4%的患者表示对药物疗效总体满意,43.8%的患者表示该药物应具有更实际的应用;52.6%的人认为该药物应在医院急诊室更容易获得。结论:HAE患者普遍认为C1-inh浓缩液对其发作有效。然而,这组患者对医务人员对HAE的认识以及药物的获取表示担忧。
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来源期刊
CiteScore
0.80
自引率
0.00%
发文量
10
期刊介绍: Asthma Allergy Immunology has been published three times a year in April, August and December as the official and periodical journal of the Turkish National Society of Allergy and Clinical Immunology since 2003. All articles published in the journal have been available online since 2003. A peer reviewed system is used in evaluation of the manuscripts submitted to Asthma Allergy Immunology. The official language of the journal is English. The aim of the journal is to present advances in the field of allergic diseases and clinical immunology to the readers. In accordance with this goal, manuscripts in the format of original research, review, case report, articles about clinical and practical applications and editorials, short report and letters to the editor about allergic diseases and clinical immunology are published in the journal. The target reader population of the Asthma Allergy Immunology includes specialists and residents of allergy and clinical immunology, pulmonology, internal medicine, pediatrics, dermatology and otolaryngology as well as physicians working in other fields of medicine interested in allergy and immunological diseases.
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