Zanichelli Andrea, Magerl Markus, Longhurst Hilary J, Aberer Werner, Caballero Teresa, Bouillet Laurence, Bygum Anette, Grumach Anete S, Botha Jaco, Andresen Irmgard, Maurer Marcus
1Department of Biomedical and Clinical Sciences Luigi Sacco, University of Milan, ASST Fatebenefratelli Sacco, Milan, Italy.
2Department of Dermatology and Allergy, Allergie-Centrum-Charité, Charité-Universitätsmedizin Berlin, Berlin, Germany.
Clin Transl Allergy. 2018 Oct 12;8:42. doi: 10.1186/s13601-018-0229-4. eCollection 2018.
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.
本分析的目的是利用依卡替班疗效调查（IOS）的数据，评估首次出现症状的年龄、诊断时的年龄以及诊断延迟随时间的变化情况。分析纳入了1990年以前出生且在25岁之前被诊断为C1-INH-HAE的患者。尽管在所评估的国家中存在很大差异，但C1-INH-HAE的诊断年龄和诊断延迟似乎都随着出生年代的后移而下降，这表明随着时间的推移，疾病认知的提高导致早期诊断率上升。我们的研究结果表明，一些患者仍面临着较长的诊断延迟，这表明仍需要提高疾病认知。
