ArticleFrontiers in psychology2026
Ecological momentary assessment to uncover affect dynamics in patients with hereditary angioedema: a complementary tool for enhancing quality of life evaluation.
Article in Frontiers in psychology, 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
Introduction: Hereditary Angioedema due to C1-INH deficiency (HAE-C1INH) is a rare genetic condition associated with poor quality of life (QoL). Affect, defined by Activation (energy) and Valence (pleasantness), is linked to QoL and fluctuates daily, reflecting emotion regulation processes. This study explored affective dynamics in HAE-C1INH patients, with (HAE A+) and without attacks (HAE A-), comparing them to healthy controls (CTR), using Ecological Momentary Assessment (EMA). Secondarily, correlation between affective dynamics and Angioedema Quality of Life (AE-QoL) was assessed. Methods: In this observational study, 12 HAE-C1INH patients and 14 CTR completed weekly EMA surveys over 16 weeks, assessing Positive Activation (PA), Negative Activation (NA), and Valence (VA). Affective intensity, variability, and instability were computed. HAE-C1INH participants also completed two self-administered questionnaires: AE-QoL and Angioedema Control Test (AECT) assessing QoL and disease control, respectively. Results: Patients showed higher mean VA ( Conclusion: Patients, especially those without attacks, displayed more positive emotional profiles than controls. EMA captured emotional patterns not evident in traditional questionnaires, supporting its value as a complementary tool for QoL evaluation in rare chronic diseases.
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