Patient satisfaction and experience with intravenously administered C1-inhibitor concentrates in the United States

Publication date: July 2017
Source:Annals of Allergy, Asthma & Immunology, Volume 119, Issue 1
Author(s): Marc A. Riedl, Aleena Banerji, Paula J. Busse, Douglas T. Johnston, Mark A. Davis-Lorton, Shital Patel, Howard Parr, Joseph Chiao, Douglas J. Watson, Earl Burrell, Thomas Machnig
BackgroundHereditary angioedema (HAE) is a rare genetic disorder with substantial morbidity and mortality. Despite expanded choices for effective acute treatment, prophylactic options are more limited. Intravenous C1 esterase inhibitor (C1-INH[IV]) is licensed and used to prevent HAE symptoms.ObjectiveTo better understand patient experiences with using C1-INH(IV), including level of satisfaction and types and frequency of complications.MethodsFifty adult members (≥18 years of age) of the US HAE Association who had HAE type I or II completed a self-administered internet survey. Eligible participants were experiencing at least 1 HAE attack per month and must have been receiving treatment with C1-INH(IV) as prophylaxis or acute therapy.ResultsAlmost all respondents (n = 47; 94%) were using C1-INH(IV) for HAE prophylaxis. Most patients reported administration of C1-INH(IV) through a peripheral vein (n = 34) and 19 were currently (n = 17) or previously (n = 2) using a central venous port. Most respondents (62%) who used a peripheral vein to administer treatment reported having difficulty finding a usable vein or getting the infusion to work properly at least some of the time. Issues accessing veins, exhausted veins, and frequency of attacks were the main reasons physicians recommended ports to respondents. Although ports allow easier administration of therapy, 47% of respondents with ports experienced problems such as occlusion, thrombosis, and infection. Respondents using C1-INH prophylaxis reported a mean of 2.3 attacks per month during the previous 6 months.ConclusionThe survey results identified clinical challenges with IV HAE medication use, including venous access issues and ongoing monthly attack occurrence despite prophylactic C1-INH(IV) administration.



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