Open AccessImprovement in diagnostic delays over time in patients with hereditary angioedema: findings from the Icatibant Outcome Survey
Author(s) -
Zanichelli Andrea,
Magerl Markus,
Longhurst Hilary J.,
Aberer Werner,
Caballero Teresa,
Bouillet Laurence,
Bygum Anette,
Grumach Anete S.,
Botha Jaco,
Andresen Irmgard,
Maurer Marcus
Publication year - 2018
Publication title -
clinical and translational allergy
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.979
H-Index - 37
ISSN - 2045-7022
DOI - 10.1186/s13601-018-0229-4
Subject(s) - icatibant , hereditary angioedema , medicine , disease , pediatrics , age of onset , angioedema , intensive care medicine , dermatology , bradykinin , receptor
The objective of this analysis was to evaluate the change over time in age at first symptoms, age at diagnosis, and delay in diagnosis using data from the Icatibant Outcome Survey (IOS). Patients with a diagnosis of C1‐INH‐HAE who were born before the year 1990 and who were diagnosed before they reached 25 years of age were included in the analysis. Both age at diagnosis and delay in diagnosis of C1‐INH‐HAE appear to decline with later decade of birth, despite wide variation across the countries assessed, suggesting that improved disease awareness causes increased rates of earlier diagnosis over time. Our findings demonstrate that some patients are still experiencing long delays to diagnosis, indicating an ongoing need for improved disease awareness.