Objective:

To describe health relaed quality of life in a cohort of stable adult outpatients with hereditary angioedema (HAE) with validated tools.

Methods:

An observational, cross-sectional, and descriptive study was performed, carried out in patients with hereditary angioedema, coming from the City of Buenos Aires and its provinces: Corrientes, Chubut, Entre Ríos and Santa Fe. The HAE-QoL and SF-12v2 health questionnaires were applied to assess the related quality of life. with health.

Results:

100 patients were included; median age: 41.5 years (range: 18-77); 65% were female, and 79% had type 1 HAE. Asymptomatic, mild, moderate and severe cases accounted for 6, 29, 38, and 27% of participants, respectively. Seventeen percent of patients were receiving long-term prophylaxis. Icatibant was the most frequent treatment for acute episodes. All health domains SF-12v2 scores were lower than expected in general population, excepting “vitality” and “physical functioning”. Total and all specific domains HAE-QoL scores were reduced. Differences between women and men and in every age-defined group were demonstrated for several specific domains.

Conclusions:

Health relaed to quality life was notably reduced in Argentinean patients with HAE, when implementing the HAE.QoL, and SF-12v2 questionnaries. The need for multidisciplinary strategies approaching this complex disease is highlighted.

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