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

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.

Keywords: C1-INH-HAE; Delay in diagnosis; Diagnosis; HAE; Hereditary angioedema.

Fig. 1

a Age at symptom onset by country. b Age at diagnosis by country. c Delay in diagnosis by country. The horizontal line inside each box indicates the median, the lower and upper borders of each box indicate the first and third quartiles, and the lower and upper box whiskers indicate the minimum and maximum values

Fig. 2

a Age at symptom onset by decade of birth. b Age at diagnosis by decade of birth. c Delay in diagnosis by decade of birth. The horizontal line inside each box indicates the median, the lower and upper borders of each box indicate the first and third quartiles, and the lower and upper box whiskers indicate the minimum and maximum values