OBJECTIVES: Hereditary angioedema (HAE) is a rare genetic disease associated with unpredictable attacks of tissue swelling. We examined the impact of the patients’ last treated HAE attack on physical and social components of quality of life (QoL) and the effect of early treatment.

METHODS: Patients with type I/II HAE completed an online survey. Participants were ≥12 years old and treated ≥1 HAE attack with an on-demand therapy in past 3 months. Physical and social QoL was assessed using modified Hereditary Angioedema Quality of Life Questionnaire.

RESULTS: Respondents included 80 adults and 14 adolescents; 54% taking long-term prophylaxis (LTP) and 46% using on-demand therapy only (OD). Fifty-five percent rated their attack severity as moderate and 16% as severe or very severe. Median (interquartile range) time from attack onset to on-demand treatment was 2 hours (1-5 hours), with 19% treating in <1 hour. Sixty-five (69%) patients (68% OD; 71% LTP) indicated that their last attack had a medium/severe impact on their energy level and 32 patients (34%) indicated their last attack prevented participation in social activities (35% OD; 35% LTP). Of the patients who treated their attack in <1 vs ≥5 hours, 56% and 70%, respectively, indicated their attack had a medium/severe impact on their energy level, and 22% and 42% reported it prevented participation in social activities. Isolation due to HAE attack was experienced by 35 (37%) patients (33% OD; 41% LTP; 28% if treated <1 hour). Thirty-seven (39%) of patients (44% OD; 35% LTP) felt like a burden to people around them because they needed help treating their attack.

CONCLUSIONS: These results indicated patients’ physical and social QoL was affected by their HAE attack, regardless of being on LTP. Attacks treated in <1 hour were associated with a lower impact on QoL, suggesting that education focused upon early attack treatment may be beneficial.