ArticleFrontiers in immunology2026
Angioedema due to acquired C1 inhibitor deficiency: patient experience, conceptual disease model, and assessment of patient-reported outcome measures.
Article in Frontiers in immunology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Angioedema due to acquired C1 inhibitor deficiency (AAE-C1INH) is a rare, serious condition that manifests with recurring and often painful swelling attacks. No approved treatments or validated patient-reported outcome (PRO) measures exist for AAE-C1INH. This study aimed to develop a conceptual model of AAE-C1INH and explored the relevance of adapting PRO measures validated for hereditary angioedema, another bradykinin-mediated disease. Methods: This cross-sectional, qualitative study involved semi-structured interviews with 8 adults living with AAE-C1INH. Open-ended questions elicited participants' descriptions of AAE-C1INH manifestations and daily life impacts. Cognitive interviews assessed perceptions of clarity, comprehension, and meaningful levels of change in PRO measures: Patient Global Impression of Change (PGI-C) and Severity (PGI-S) and Patient Global Assessment of Status (PGA-S) and Change (PGA-C). Results: Participants reported traumatic medical emergencies, misdiagnoses, and evaluations by a variety of healthcare providers. Daily life impact was common (social/family and treatment-related; n=7). Attack areas most frequently reported were abdomen (n=7), face (n=6), and foot/hand (n=5 each). Evaluating PGI-C, 8/8 participants correctly interpreted the scale to assess symptoms at a given time post-treatment vs. at time of treatment for a theoretical AAE-C1INH attack. Four of 8 participants considered "a little better" ≥2 hours post-treatment and 6/6 considered "better" ≥4 hours as meaningful. Most also considered PGI-S and PGA easy to interpret and relevant to their symptoms. Conclusion: Interviews highlighted the impact of AAE-C1INH on participants' lives and overall well-being. Participants' assessments of PRO items have informed the clinical outcome assessment strategy for the first phase 3 clinical trial exclusively in AAE-C1INH.
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