ORIGINAL RESEARCH article
Front. Digit. Health
Sec. Digital Mental Health
This article is part of the Research TopicGenetic and Immunological Insights into Angioedema Without WhealsView all 12 articles
Ecological Momentary Assessments for Patients with Hereditary Angioedema: A Feasibility and Acceptability Controlled Study
Provisionally accepted
Monica Parati1
Luca Ranucci1Azzurra Cesoni1Lorenza Chiara Zingale1
Beatrice De Maria1
Clara Gino1
Aida Zulueta1Riccardo Sideri1
Alessandra Gorini1,2*
Francesca Perego1- 1Istituti Clinici Scientifici Maugeri SpA IRCCS Milano, Milan, Italy
- 2Dipartimento di Scienze Cliniche e di Comunità, Dipartimento di Eccellenza 2023-2027, Università degli Studi di Milano, Via Festa del Perdono 7, 20122 Milano, Italia., University of Milan, Milan, Italy, Italy
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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 versus 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: Ecological Momentary Assessment, hereditary angioedema, Rare Diseases, feasibility, Acceptability
Received: 27 Aug 2025; Accepted: 15 Dec 2025.
Copyright: © 2025 Parati, Ranucci, Cesoni, Zingale, De Maria, Gino, Zulueta, Sideri, Gorini and Perego. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Alessandra Gorini
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