IMPACT OF HEREDITARY ANGIOEDEMA (HAE) ATTACKS ON QUALITY OF LIFE AND ACTIVITIES OF DAILY LIVING

Abstract

<h3>Introduction</h3> HAE is characterized by recurrent and unpredictable episodes of subcutaneous or submucosal swelling affecting the abdomen, extremities, genitals, face, and larynx. This study characterized the impact of HAE attacks on patients' quality of life and activities of daily living. <h3>Methods</h3> Between November 2021 and March 2022 the US HAE Association (HAEA) and HAE International (HAEi) invited patients with HAE to participate in a 2-hour focus group. Participants provided informed consent and completed pre- and post- focus group surveys. <h3>Results</h3> A total of 32 respondents (mean age 33yrs [range 15-72, ‘adolescent, 15-18yrs', n=7; ‘adult, 19+yrs', n=25]) reported a mean of 33 attacks annually (median 18, range 0-170). Attack management included on-demand therapy only (65% overall, [50% adolescent/68% adult]) or prophylaxis treatment with on-demand therapy for breakthrough attacks (35% overall, [50% adolescent/32% adult]). Overall, 67% (68% adolescent/67% adult; 65% on-demand/78% prophylaxis) reported that an untreated attack resulted in a change of daily plans and 58% (70% on-demand/36% prophylaxis) stated they could not participate in important events or activities. The unpredictability of attacks caused anxiety and negatively impacted mental health in 39% of participants (17% adolescent/44% adult; 36% on-demand/45% prophylaxis) and nearly half (28% adolescent/54% adult) reported feeling ‘less than 100% themselves' due to HAE. <h3>Conclusion</h3> HAE attacks produce a significant disease burden on mental health, daily activities, and overall quality of life in patients. Despite significant advances in treatment options, there remains an opportunity to improve the lives of those with HAE.