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

Semra Demir
Müge Olgaç
Derya Ünal
Raif Coşkun
Aslı Gelincik
Bahauddin Çolakoğlu
Suna Büyüköztürk

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.

Keywords

Hereditary angioedema, C1 inhibitor concentrate, opinion of patients
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