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

被引：27

作者：

Zanichelli, Andrea ^{[1
]}

Magerl, Markus ^{[2
]}

Longhurst, Hilary J. ^{[3
,10
]}

Aberer, Werner ^{[4
]}

Caballero, Teresa ^{[5
]}

Bouillet, Laurence ^{[6
]}

Bygum, Anette ^{[7
]}

Grumach, Anete S. ^{[8
]}

Botha, Jaco ^{[9
]}

Andresen, Irmgard ^{[9
]}

Maurer, Marcus ^{[2
]}

机构：

[1] Univ Milan, ASST Fatebenefratelli Sacco, Dept Biomed & Clin Sci Luigi Sacco, Milan, Italy

[2] Charite Univ Med Berlin, Allergie Ctr Charite, Dept Dermatol & Allergy, Berlin, Germany

[3] Barts Hlth NHS Trust, Dept Immunol, London, England

[4] Med Univ Graz, Dept Dermatol & Venereol, Graz, Austria

[5] Hosp La Paz Inst Hlth Res IdiPaz, Biomed Res Network Rare Dis CIBERER, Dept Allergy, U754, Madrid, Spain

[6] Grenoble Univ Hosp, Natl Reference Ctr Angioedema, Internal Med Dept, Grenoble, France

[7] Odense Univ Hosp, Dept Dermatol & Allergy Ctr, Odense, Denmark

[8] Fac Med ABC, Sao Paulo, Brazil

[9] Shire, Zug, Switzerland

[10] Cambridge Univ Hosp NHS Fdn Trust, Addenbrookes Hosp, Dept Clin Biochem & Immunol, Cambridge, England

来源：

CLINICAL AND TRANSLATIONAL ALLERGY | 2018年 / 8卷

关键词：

Hereditary angioedema; HAE; C1-INH-HAE; Diagnosis; Delay in diagnosis; BURDEN;

D O I：

10.1186/s13601-018-0229-4

中图分类号：

R392 [医学免疫学];

学科分类号：

100102 ;

摘要：

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.

引用

页数：5

共 50 条

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