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Hereditary angioedema from the patient's perspective: A follow-up patient survey

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We conducted our first patient survey at the 2013 hereditary angioedema (HAE) patient summit and learned that, despite several novel therapies, the burden of disease was high.


To determine, from the patient's perspective, if any improvements in the current state of HAE care occurred over a two-year period between HAE patient summits.


A patient survey was conducted at the 2015 Hereditary Angioedema Association conference by using paper surveys that aimed at understanding the current state of HAE care. Questions included patient characteristics, burden of disease, and satisfaction with care and treatment options. Comparisons between patients with HAE with C1-inhibitor (HAE-C1INH) and patients with HAE with normal C1-inhibitor (HAE-nlC1INH), as well as between patients with HAE in 2013 and 2015, were performed by using χ2 tests.


There were 232 surveys distributed, and 143 surveys were identified as complete for inclusion and analysis from patients with self-reported HAE. Most patients had type I or type II HAE (67.5% [n = 106]), with a smaller number of patients with HAE-nlC1INH (23.6% [n = 37]). In 2015, almost half of the patients with HAE-C1INH (47.1%) and 56.7% of the patients with HAE-nlC1INH experienced a delay of ≥10 years between initial symptoms and diagnosis. Among the patients with HAE-C1INH, 25% reported one or more attacks per week and another 48% reported experiencing one or more attacks per month (fewer than one attack per week). The patients with HAE-nlC1INH reported attacks more frequently than did the patients with HAE-C1INH (p = 0.002), with 59.5% who reported attacks at least once a week. Emergency care was reported one or more times per month in 5% of the patients with HAE-C1INH and in 24.3% of the patients with HAE-nlC1INH.


Similar to 2013, although significant progress has been made, there is still a high burden of disease that faces patients with HAE.
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Keywords: Angioedema; C1 inhibitor; burden of disease; prophylaxis; quality of life; satisfaction; survey; swelling

Document Type: Research Article

Affiliations: 1: From the Division of Rheumatology, Allergy and Immunology, Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts 2: Division of Allergy and Clinical Immunology, Icahn School of Medicine at Mount Sinai, New York, New York 3: Division of Rheumatology, Allergy and Immunology, Department of Medicine, University of California San Diego, La Jolla, California 4: Institute for Asthma and Allergy, Chevy Chase, Maryl 5: Department of Medicine, Winthrop University Hospital, Mineola, New York 6: Department of Medicine, University of Cincinnati College of Medicine, Cincinnati, Ohio 7: Department of Pediatrics, Duke University Medical Center, Durham, North Carolina 8: United States Hereditary Angioedema Association, Honolulu, Hawaii 9: Department of Medicine, University of California San Diego, La Jolla, California 10: Allergy and Asthma Research Associates Research Center, Dallas, Texas

Publication date: May 1, 2018

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  • Allergy and Asthma Proceedings is a peer reviewed publication dedicated to distributing timely scientific research regarding advancements in the knowledge and practice of allergy, asthma and immunology. Its primary readership consists of allergists and pulmonologists.

    The goal of the Proceedings is to publish articles with a predominantly clinical focus which directly impact quality of care for patients with allergic disease and asthma and by having the potential to directly impact the quality of patient care. AAP welcomes the submission of original works including peer-reviewed original research and clinical trial results. Additionally, as the official journal of the Eastern Allergy Conference (EAC), AAP will publish content from EAC poster sessions as well as review articles derived from EAC lectures.

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    The journal is indexed in Thomson Reuters Web of Science and Science Citation Index Expanded, plus the National Library of Medicine's PubMed service.
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