D3.394 - Anxiety Associated with Parenteral On-Demand Treatment for Hereditary Angioedema Attacks in Patients from Italy

Poster abstract

Background

Patients with hereditary angioedema (HAE) often experience anxiety due to unpredictable, potentially painful and debilitating attacks. Currently, all approved on-demand treatments for managing attacks require parenteral administration, which can be challenging to administer and may be associated with injection site reactions, which can both contribute to anxiety. This study aimed to characterize the anxiety associated with the use of parenteral on-demand therapy.

Method

People with Type 1 or Type 2 HAE from Italy were recruited between September 2023 and January 2024 by the Italian Network for Hereditary and Acquired Angioedema (ITACA) to complete an online survey. Participants were ≥12yrs old and had to have treated ≥1 HAE attack with an approved on-demand (OD) therapy within 3 months prior to the survey. Data was entered into the ITACA registry and confirmed by reference center physicians. Participants were asked to rate their anxiety about using OD treatment during their last attack on a scale of “0 “not anxious” to 10 “extremely anxious”.

Results

A total of 101 respondents (mean age 38 years, 60% female, 91% Type 1, 52% receiving long-term prophylaxis) included 87 adults and 14 adolescents (<18yrs). Fifteen participants (15%) were diagnosed with an anxiety disorder by a physician (females 15% [9/60]; males 15% [6/40]; adults 15% [13/87]; adolescents 14% [2/14]). Icatibant was the most commonly used OD therapy for the last attack (55%), followed by pdC1INH (46%). Forty-seven percent (47/101) of respondents felt moderately (anxiety: 4-6) or extremely anxious (anxiety: 7-10) about treating their last attack with OD treatment, including 86% (12/14) of adolescents and 80% (12/15) of those diagnosed with anxiety. Respondents taking an intravenous OD treatment were more anxious than those taking subcutaneous OD treatment (33% versus 22% were extremely anxious). Among the 74 respondents (73%) who reported feeling anxious, the top-ranked reasons for anxiety are shown in the Figure.

Conclusion

A substantial proportion of survey respondents experienced moderate to extreme anxiety about using parenteral OD treatment, including most adolescents and those diagnosed with anxiety disorder. Top-ranked reasons for anxiety were commonly related to treatment effectiveness, administration burden, and having treatment available. Effective alternatives to current parenteral OD treatments are needed to address treatment-related anxiety associated with HAE attacks.