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

Abstract

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.

Keywords: acceptability; ecological momentary assessment; feasibility; hereditary angioedema; rare diseases.

Figure 1

Study timeline. Graphical representation of the study timeline (a) and example of an item included in the weekly surveys (b). Icons from: “electronic devices icon” by xnimrodx, “unhappy to happy scale icon” by Freepik, “online survey icon” by Maan Icons and “email icon” by Smashicons, licensed under Flaticon License.

Figure 2

Study flowchart. Study flowchart related to the application of EMA surveys in patients with HAE and healthy individuals.

Figure 3

Survey's return time. Return time of EMA surveys for each week in the group of HAE patients (a) and in the group of healthy individuals (b).