Hereditary angioedema (HAE) is a life-threatening condition characterized by recurrent episodes of subcutaneous or submucosal edema commonly involving the larynx, face, bowel and extremities. Angioedema flares are unpredictable, intense and vary in localization. The aim of this study was to assess the burden of HAE in the quality of life among Puerto Ricans suffering this disease.
A cross sectional study was performed using the SF-36v2 questionnaire in order to evaluate health-related quality of life of HAE patients in Puerto Rico. The questionnaire is a standardized instrument that compares HAE patient data to a normative (healthy) United States population.
Of the 30 patients surveyed, 82% were females. Compared to the general population, the patients scored significantly lower for physical and mental component. The most affected parameters were physical and social functioning. Of the reported sample, 54% were at risk for depression compared to 18% in the general population. Sex disparity was observed. Females scored below males in all components except for general health. Physical component score was below norm in 40% of males and 67% of female. Mental component score was below norm in 40% of male and 61% of females. Specifically, depression score was higher in females than males (61% vs 20%).
HAE is a significant burden in the quality of life of our patients, particularly among women. The most affected areas were physical and social functioning. Education, increase awareness among patients and accessibility of medications may help improve quality of life.