Ecological momentary assessments for patients with hereditary angioedema: a feasibility and acceptability controlled study

Introduction Hereditary angioedema (HAE) is a rare disease imposing a significant quality of life burden. Affect monitoring via Ecological Momentary Assessment (EMA) could offer personalized psychological support by collecting repeated, ecological data in real-life, overcoming the limitations of traditional methods. This study assessed the feasibility and acceptability of an EMA protocol for affect monitoring in HAE patients vs. healthy controls (CTR). Methods HAE patients and CTR were recruited for a 16-week EMA study. Participants received weekly EMA surveys assessing affect via REDCap™. Feasibility was evaluated through recruitment, response, and completion rates. Acceptability was assessed via a post-study questionnaire through a visual analogue scale ranging from 1 to 100. Results Twenty-eight Caucasian subjects were contacted, 12 HAE [median age: 50 (22) years, 5 males] and 14 CTR [age: 30 (32) years, 6 males] agreed to participate, resulting in a recruitment rate of 93%. Response and completion rates were ≥92% and ≥96% respectively in both groups. Completion time was brief and did not differ between groups [HAE: 1′ 28″ (29″) vs. CTR: 1′ 15′ (15″), P = 0.274]. The protocol was considered acceptable by both groups [HAE: rate 83.5 (18.8) vs. CTR: 72.0 (13.0), p = 0.27] with HAE rating the experience as helpful [79 (39.8)] and thought-provoking [67 (33)]. Conclusion EMA is a highly feasible and acceptable method for affect monitoring in HAE. The presence of a rare disease does not appear to be a barrier to its application, supporting its use in this clinical setting.