Improvement in diagnostic delays over time in patients with hereditary angioedema: findings from the Icatibant Outcome Survey

• Main Authors: Andrea Zanichelli, Markus Magerl, Hilary J. Longhurst, Werner Aberer, Teresa Caballero, Laurence Bouillet, Anette Bygum, Anete S. Grumach, Jaco Botha, Irmgard Andresen, Marcus Maurer, the IOS Study Group
• Format: Article
• Language: English
• Published: Wiley 2018-10-01
• Series: Clinical and Translational Allergy
• Subjects: Hereditary angioedema; HAE; C1-INH-HAE; Diagnosis; Delay in diagnosis
• Online Access: http://link.springer.com/article/10.1186/s13601-018-0229-4

Abstract 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.