Characteristics and therapeutic management of attacks in patients with hereditary angioedema with a focus on barriers to early treatment - 03/04/26
, A. Bocquet 1, D. Gobert 2, S. Gayet 3, S. Debord-Peguet 4, A. Du Thanh 5, I. Boccon-Gibod 1, I. Citerne 6, A. Belot 7, O. Fain 2, M. Aubineau 8, T. Stanbury 9, B. Bouquillon 9, M. Arnaud 10, D. Launay 11Résumé |
Prérequis/Contexte |
Hereditary angioedema (HAE) is characterized by unpredictable and potentially severe attacks. Early initiation of treatment for these attacks is crucial to increasing treatment effectiveness and lowering the risk of severe attacks. Thus, to permit early treatment patients are trained to inject treatments. Despite this, attacks are not always treated promptly.
Objectifs |
To assess the therapeutic management and burden of HAE in patients and caregivers, as well as to identify potential barriers to early treatment.
Méthodes |
The CREAK network conducted a survey of patients with HAE.
Résultats/Discussions |
Between the 5th of March and the 5th of August 2025, 300 patients with HAE responded to the survey. Of the 191 (64%) with ≥1 HAE attack in the previous 12 months, 94/190 (49%) had long-term prophylaxis. The initial location of the last attack was abdominal in 113/184 (61%), facial (face, throat, and tongue) in 32 (17%), and peripheral in 39 (21%). The HAE attacks spread to other regions in 27/184 (15%) of patients. Initially, the attack severity was mild in 69/173 patients (40%), moderate in 74 (43%), and severe/very severe in 30 (17%). When initiating treatment, the attack severity was mild in 20/166 patients (12%), moderate in 63 (38%), and severe/very severe in 83 (50%). The median time to treat the attacks from the onset was 3 h (Q1–Q3: 1–9; n = 171). When treated, the median overall duration of the attack was 24 h (Q1–Q3: 6–48; n = 180). For the last attack, 160/182 patients (88%) used icatibant: 100/160 (62%) considered that they had initiated treatment sufficiently early and 139/157 (89%) considered icatibant to be effective. The factors that delayed the treatment of attacks included the perception that the attack was not sufficiently severe, diagnostic uncertainty, the wish to not use the treatment, and availability of treatment. Patients reported substantial anxiety associated with HAE attacks.
Conclusion |
Patients report HAE attacks despite long-term prophylaxis. Most patients consider that they treat their HAE attacks sufficiently early. The factors associated with treatment delay were identified and several could be reduced with patient education.
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Vol 66 - N° S
Article 104769- avril 2026 Retour au numéro
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