Hereditary angioedema (HAE) attacks can have a considerable negative impact on patients’ mental health, activities of daily living, and overall quality of life, according to the results of a 2-hour focus group analysis published in the Annals of Allergy, Asthma & Immunology.

Patients with HAE experience recurrent, unpredictable episodes of subcutaneous or submucosal swelling that can affect their abdomen, genitals, extremities, larynx, and face. Between November 2021 and March 2022, the US HAE Association and the HAE International invited individuals with HAE to participate in a 2-hour focus group. Prefocus group and postfocus group surveys were completed by all participants.

Among a total of 32 respondents, a mean of 33 HAE annual attacks were reported (median, 18 attacks; range, 0-170 attacks). The mean participant age was 33 years (range, 15-72 years), with 7 patients in the adolescent group (15-18 years of age) and 25 patients in the adult group (19+ years of age).

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HAE attacks were managed with on-demand therapy only in 65% of the participants (50% of adolescents and 68% of adults). In 35% of the participants, HAE attacks were managed with prophylaxis treatment plus on-demand therapy for breakthrough attacks (50% of adolescents and 32% of adults).

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Overall, 67% of the participants (68% of adolescents and 67% of adults, 65% of whom received on-demand therapy and 78% of whom received prophylaxis treatment) reported that an untreated HAE attack was associated with a change in their plans.

Additionally, 58% of participants (70% of whom received on-demand therapy and 78% of whom received prophylaxis treatment) indicated that they were unable to participate in important events or activities of daily living.

The unpredictability of HAE attacks created anxiety and negatively affected the mental heath of 39% of participants (17% of adolescents and 44% of adults, 36% of whom received on-demand therapy and 45% of whom received prophylaxis treatment). In fact, 28% of the adolescent participants and 54% of the adult participants reported that they felt “less than 100% themselves” because of having HAE.

The authors concluded that “Despite significant advances in treatment options, there remains an opportunity to improve the lives of those with HAE.”


Busse P, Caballero T, van Kooten S, Danese S, Goga L. Impact of hereditary angioedema (HAE) attacks on quality of life and activities of daily living. Ann Allergy Asthma Immunol. 2022;129(5):S26. doi:10.1016/j.anai.2022.08.579