The Disease Burden of Hereditary Angioedema: Insights from a Survey in French-Canadians from Quebec.

Background

Limited data are available on the clinical profile and disease burden of hereditary angioedema (HAE) in Canadians.

Objective

This study aimed to assess HAE disease characteristics and the burden of disease in Canadians with HAE types I, II, and normal levels of C1 inhibitor (nC1-INH).

Materials and Methods

A 46-item patient survey evaluating clinical characteristics and burden of disease was developed and disseminated by the HAE patient organization

Results

In the 35 respondents, HAE type I was the most common (46%), followed by nC1-INH (43%). Female participants were significantly younger at first symptom presentation than males (

Conclusion

HAE manifests in this patient population as frequent moderate-to-severe attacks and a high disease burden; the HAE subtype may differentially affect care requirements. There is an urgent need for increased awareness and education on HAE among treating physicians.

Informations de copyright

Copyright © 2024 Jean-Nicolas Boursiquot et al.

Déclaration de conflit d'intérêts

Dr. Boursiquot has acted on medical advisory boards for CSL Behring and Takeda. Dr. Chapdelaine declares grants outside the submitted work from Takeda, CSL Behring, Pharvaris, Dyax, Green Cross, Sanofi, Merck, and Novartis. He also reports personal fees outside the submitted work from CSL-Behring, Takeda, and Sobi and is an associate review editor with Frontiers in Immunology. Dr. Hébert has received advisory board fees from Takeda and CLS Behring and teaching fees from Takeda and CLS Behring. Mr. St-Pierre has acted on medical and patient advisory boards for Héma-Québec and Institut national d'excellence en santé et en services sociaux (INESSS).