Ecological momentary assessment to uncover affect dynamics in patients with hereditary angioedema: a complementary tool for enhancing quality of life evaluation

Abstract Hereditary Angioedema (HAE) 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 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 AE-QoL was assessed. In this observational study, 12 HAE 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 participants also completed the AE-QoL and AECT. HAE patients showed higher mean VA (p = 0.016) and lower NA for worry (p = 0.021) than CTR. HAE A − had higher PA and VA, and lower NA for anger and worry than both HAE A + and CTR. AE-QoL correlated negatively with PA (r=–0.78, p = 0.003) and VA (r=–0.68, p = 0.014). HAE 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.