Calidad de vida relacionada con la salud en pacientes con angioedema hereditario de Argentina. Estudio multicéntrico

Abstract

Background: Hereditary angioedema (HAE) is associated with a detrimental impact on health-related quality of life (HRQoL). Scarce data evaluating HRQoL in this population is available in Argentina. Objective: to describe HRQoL in a cohort of stable adult outpatients with HAE with validated tools. Methods: a nationwide, cross-sectional, descriptive study was performed. HRQoL was evaluated by the HAE-QoL questionnaire and the SF-12v2 Health Survey. 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: HRQoL was notably reduced in Argentinean patients with HAE. The need for multidisciplinary strategies approaching this complex disease is highlighted.