June 12, 2024

Usage prevalence of angioedema patient-reported outcome measures: results from the UCARE and ACARE PROMUSE study

Cherrez-Ojeda I, Bousquet J, Giménez-Arnau A et al. J Allergy Clin Immunol Pract. 2024 May 9:S2213-2198(24)00464-1. doi: 10.1016/j.jaip.2024.04.056.

Clinical Communication

Angioedema manifests as self-limited, localized, and transient swellings of the skin or mucosal tissues due to a loss of vascular integrity. This allows fluid to move into tissues such as the face, larynx, genitals, and bowel wall(1). The global lifetime prevalence of acquired and hereditary angioedema is 7.4%(2) and 0.002%(3), respectively. Notably, angioedema is the third most common skin condition in emergency medicine.(4) The burden of angioedema includes poor quality of life, mental issues, and reduced work and school productivity, leading to substantial direct and indirect expenses.(5) Patient-reported outcome measures (PROMs) asses disease burden,activity, and control.(6) PROMs are also used to assess the response to treatments in routine clinical practice and help to evaluate innovative therapies under development in clinical trials. Moreover, the integration of PROMs will promote cooperative decision-making among healthcare practitioners and patients, eventually improving patient satisfaction and optimizing treatment outcomes(6).

In angioedema, the three most widely used PROMs are the Angioedema Activity Score (AAS)(7), the Angioedema Quality of Life Questionnaire (AE-QoL),(8) and the Angioedema Control Test (AECT).(9) These tools are validated(7–9), recommended by current guidelines, freely available in many languages and country versions, yet the rate of their use in angioedema management is currently unknown. To address this gap, the global networks of Urticaria Centers of Reference and Excellence (UCAREs) and Angioedema Centers of Reference and Excellence (ACAREs) performed a cross-sectional study, PROMUSE (IRB approval No. HCKJournal CEISH-21-002), to assessed which and how often PROMs are used by physicians who treat patients with angioedema, and to identify what physicians perceive as barriers to the use of PROMs. In total, 370 angioedema-treating physicians from 39 countries completed the PROMUSE 53-item questionnaire...

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