Emergency Department Management of Hereditary Angioedema Attacks: Patient Perspectives

Iris M. Otani, Sandra C. Christiansen, Paula Busse, Carlos A. Camargo, Bruce L. Zuraw, Marc A. Riedl, Aleena Banerji

Research output: Contribution to journalArticlepeer-review

17 Scopus citations

Abstract

Background Emergency department (ED) management of hereditary angioedema (HAE) has been hindered by misdiagnosis and limited treatment options. Food and Drug Administration approval of 4 on-demand HAE therapies starting in 2009 and the publication of ED guidelines for angioedema management in 2014 should facilitate improvement of HAE management in the ED. Objective The objective of this study was to identify patient-reported areas for improvement in ED management of HAE attacks. Methods Patients with self-reported HAE with C1 inhibitor deficiency who attended the 2015 HAE Association Patient Summit were asked to complete an anonymous 30-question survey. Questions addressed patient characteristics and HAE management in the ED. Results Patients indicated that understanding of HAE in the ED needed improvement (99%, 104 of 105 patients). Recognition of HAE as a diagnosis (48%, 50 of 105 patients), appreciation of HAE as a serious disease (45%, 47 of 105 patients), and medication management (59%, 62 of 105 patients) were identified as areas needing improvement. Among 39 patients who required ED care within the last year, 6 did not receive any HAE-targeted therapy, and treatment with corticosteroids (n = 3), epinephrine (n = 2), and antihistamines (n = 7) was reported. Among 68 patients whose treatment plan was to receive home on-demand therapy, 26 required ED care because of an inability to receive on-demand therapy at home as outlined in their treatment plan. Having a treatment plan was associated with a greater likelihood of receiving HAE therapy in the ED (99% vs 74%, P = .002). Conclusion HAE management in the ED can be improved with a focus on recognition of HAE attacks and administration of effective HAE therapies.

Original languageEnglish
Pages (from-to)128-134.e4
JournalJournal of Allergy and Clinical Immunology: In Practice
Volume5
Issue number1
DOIs
StatePublished - 1 Jan 2017

Keywords

  • Angioedema guidelines
  • Angioedema management
  • Disease burden
  • Emergency department
  • Hereditary angioedema
  • Hereditary angioedema attacks
  • On-demand treatment
  • Patient-reported outcomes
  • Quality of life
  • Treatment plan

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