title: Socioeconomic burden of hereditary angioedema: results from the hereditary angioedema burden of illness study in Europe.
abstract: BACKGROUND
  Hereditary angioedema (HAE) due to C1 inhibitor deficiency is a rare but serious and potentially life-threatening disease marked by spontaneous, recurrent attacks of swelling. The study objective was to characterize direct and indirect resource utilization associated with HAE from the patient perspective in Europe.
  
  
  METHODS
  The study was conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE via a cross-sectional survey of HAE patients, including direct and indirect resource utilization during and between attacks for patients and their caregivers over the past 6 months. A regression model examined predictors of medical resource utilization.
  
  
  RESULTS
  Overall, 164 patients had an attack in the past 6 months and were included in the analysis. The most significant predictor of medical resource utilization was the severity of the last attack (OR 2.6; p < 0.001). Among patients who sought medical care during the last attack (23%), more than half utilized the emergency department. The last attack prevented patients from their normal activities an average of 4-12 hours. Patient and caregiver absenteeism increased with attack severity and frequency. Among patients who were working or in school (n = 120), 72 provided work/school absenteeism data, resulting in an estimated 20 days missing from work/school on average per year; 51% (n = 84) indicated that HAE has hindered their career/educational advancement.
  
  
  CONCLUSIONS
  HAE poses a considerable burden on patients and their families in terms of direct medical costs and indirect costs related to lost productivity. This burden is substantial at the time of attacks and in between attacks.
authors.affiliation: Department for Children and Adolescents, Angioedema Centre, University Hospital Frankfurt, Goethe University, Theodor-Stern-Kai 7, 60596 Frankfurt, Germany. Aygoeren@em.uni-frankfurt.de.
authors.forename: Emel
authors.initials: E
authors.lastname: Aygören-Pürsün
authors.forename: Anette
authors.initials: A
authors.lastname: Bygum
authors.forename: Kathleen
authors.initials: K
authors.lastname: Beusterien
authors.forename: Emily
authors.initials: E
authors.lastname: Hautamaki
authors.forename: Zlatko
authors.initials: Z
authors.lastname: Sisic
authors.forename: Suzanne
authors.initials: S
authors.lastname: Wait
authors.forename: Henrik B
authors.initials: HB
authors.lastname: Boysen
authors.forename: Teresa
authors.initials: T
authors.lastname: Caballero
mesh_terms: D054179:Angioedemas, Hereditary / Q000191:economics*; D017281:Cost of Illness; D005060:Europe; D006801:Humans; D012959:Socioeconomic Factors