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Demographic and clinical characteristics of patients with hereditary angioedema in Canada

Erika Yue Lee1, Jane Hsieh2, Teresa Caballero3

  • 1Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada; Division of Clinical Immunology and Allergy, Department of Medicine, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada.

Annals of Allergy, Asthma & Immunology : Official Publication of the American College of Allergy, Asthma, & Immunology
|July 23, 2021
PubMed

Insights

Canadian patients with hereditary angioedema (HAE) experience significant diagnostic delays and a high disease burden. This study highlights common clinical features and treatment access in the Canadian HAE population.

Area of Science:

  • Immunology
  • Genetics
  • Clinical Medicine

Background:

  • Limited data exists on the clinical and demographic profiles of Canadian patients diagnosed with hereditary angioedema (HAE).
  • Understanding these characteristics is crucial for improving patient care and management strategies.

Purpose of the Study:

  • To delineate the clinical and demographic features of a large Canadian cohort of HAE patients.
  • To compare these features with those reported in HAE patient populations internationally.

Main Methods:

  • An online survey was administered to members of two Canadian HAE patient advocacy groups.
  • Data collected included demographics, HAE type, attack frequency, location, prodromes, triggers, and treatment modalities.
  • Eligibility criteria included individuals aged 18+ with HAE type I or II.

Main Results:

  • Ninety participants completed the survey, with 57% reporting HAE type I and 26% HAE type II.
  • The average diagnostic delay was 11 years, with 35% experiencing over 5 attacks in the prior six months.
  • Commonly affected areas included the abdomen (83%), limbs (63%), face (41%), and larynx/throat (41%).
  • Access to C1 inhibitor at home was reported by 87%, with 69% using it for prophylaxis.

Conclusions:

  • Canadian HAE patients exhibit clinical characteristics similar to international cohorts.
  • A significant diagnostic delay and high disease burden, evidenced by frequent attacks, are prevalent.
  • This research enhances the understanding of demographic and clinical aspects of HAE in Canada.
Abstract

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