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Original

The international HAE guideline under real-life conditions: From possibilities to limits in daily life – current real-world data of 8 German angioedema centers

Jens Greve, Robin Lochbaum, Susanne Trainotti, Eva-Vanessa Ebert, Thomas Buttgereit, Antonia Scherer, Lisa Knipps, Anna Smola, Sebastian Volc, Andreas Recke, Katharina Marlies Duda, Mathias Sulk, and Janina Hahn

Volume 8 (2024) p. 346 - 357

Abstract

Allergologie select, Vol. 8/2024 (346-357)

The international HAE guideline under real-life conditions: From possibilities to limits in daily life – current real-world data of 8 German angioedema centers

Jens Greve¹, Robin Lochbaum¹, Susanne Trainotti², Eva-Vanessa Ebert², Thomas Buttgereit³, Antonia Scherer⁴, Lisa Knipps⁴,⁵, Anna Smola⁶, Sebastian Volc⁷, Andreas Recke⁸, Katharina Marlies Duda⁹, Mathias Sulk¹⁰, and Janina Hahn¹
Background and objectives: Patients with rare diseases like hereditary angioedema (HAE) are usually referred to an angioedema center to ensure guideline-compliant and experience-based therapy. Even though there are established guidelines and several approved therapeutics, there are still open questions and situations in the daily care of HAE patients, where an exchange between centers is needed. Materials and methods: A survey was conducted among physicians from German angioedema centers regarding challenges and issues in everyday HAE treatment. The main focus was on the topic of long-term prophylaxis (LTP). For rarer subcategories of angioedema, the centers conducted a literature review to discuss open questions. Results: The responses of 12 physicians from 8 angioedema centers were analyzed in the survey. The attack frequency was the most important criterion for deciding to initiate LTP in HAE patients (100%). Two centers no longer generally recommend the initiation of pre-interventional prophylaxis in HAE patients under LTP. The therapeutic concepts of acquired angioedema due to C1 inhibitor deficiency and HAE in children were two associated specialized areas that were discussed in more detail. Conclusion: The current guideline serves as the foundation for daily practice in treating HAE at specialized centers. Thus, for rare conditions like HAE, an exchange among the treating centers is essential to adequately address specific issues and rare subgroups.Correspondence to:
Prof. Dr. Jens Greve, Department of Oto-Rhino-Laryngology. Head and Neck Surgery, Ulm University Medical Center, Frauensteige 12, 89075 Ulm, Germany
Email: [email protected]

Original

Achieving a normal life in hereditary angioedema: Quality of life and treatment gaps among German HAE patients

Markus Magerl, Thomas Buttgereit, Inmaculada Martinez-Saguer, Petra Staubach-Renz, Jens Greve, Emel Aygören-Pürsün, Lucia Schauf, and Kathrin Schön

Volume 10 (2026) p. 1 - 10

Abstract

Allergologie select, Vol. 10/2026 (1-10)

Achieving a normal life in hereditary angioedema: Quality of life and treatment gaps among German HAE patients

Markus Magerl¹,², Thomas Buttgereit¹,², Inmaculada Martinez-Saguer³, Petra Staubach-Renz⁴, Jens Greve⁵, Emel Aygören-Pürsün⁶, Lucia Schauf⁷, and Kathrin Schön¹,²,⁷

¹Institute of Allergology, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, ²Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Immunology and Allergology, Berlin, ³HZRM Haemophilia Center Rhein Main, Frankfurt am Main, ⁴University Medical Center, Mainz, ⁵Department of Otorhinolaryngology, Head and Neck Surgery, Ulm University Medical Center, Ulm, ⁶University Hospital Frankfurt, Department for Children and Adolescents, Frankfurt, and ⁷HAE Vereinigung e.V., Germany
Background: Hereditary angioedema (HAE) is a rare genetic disease characterized by recurrent swelling attacks. Current guidelines for HAE management emphasize achieving complete disease control to normalize patients’ lives. Quality of life (QoL) differences between patients with 0 attacks and those with persistent attacks remain to be explored. Materials and methods: The German patient organization for individuals affected by hereditary angioedema, HAE Vereinigung e.V. conducted an online survey with 122 HAE patients in Germany in 2024. Participants were categorized according to their therapy – long-term prophylaxis (LTP) or on-demand therapy (ODT) – and according to their attack frequency over the last 6 months. Patient-reported outcomes for functional, emotional, and social impacts were analyzed to evaluate QoL. Results: Although 83% of patients expressed satisfaction with their treatment, 59% of patients still had attacks. Patients on LTP reported significantly fewer attacks (p < 0.001) and higher QoL compared to those on ODT (p < 0.001). Patients with 0 attacks consistently showed significantly better outcomes across all QoL domains than those with 1 or more attacks (p < 0.001). Conclusion: The findings highlight that even minimal residual disease activity can meaningfully reduce QoL. Achieving complete attack freedom, rather than partial control, is necessary to restore normalcy for patients with HAE. Hence, regular adjustments of the HAE management plans based on patient-reported outcomes are crucial to ensure that treatment strategies address both medical and QoL needs.Correspondence to:
Thomas Buttgereit, MD, Charité – Universitätsmedizin Berlin, Institute of Allergology, Hindenburgdamm 30, 12203 Berlin, Germany
Email: [email protected]

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