Patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviews
Abstract Purpose Eosinophilic esophagitis (EoE), a chronic immune-mediated progressive disease, causes dysphagia, food impaction, abdominal pain, vomiting, and heartburn. EoE requires long-term monitoring and can affect quality of life owing to its symptoms and associated emotional and social burden...
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SpringerOpen
2025-01-01
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Online Access: | https://doi.org/10.1186/s41687-025-00836-x |
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author | Calvin N. Ho Harald Fjällbrant Evan S. Dellon Cecilio Santander Marc E. Rothenberg Julie Bailey Shehan McFadden Jason Ritchie |
author_facet | Calvin N. Ho Harald Fjällbrant Evan S. Dellon Cecilio Santander Marc E. Rothenberg Julie Bailey Shehan McFadden Jason Ritchie |
author_sort | Calvin N. Ho |
collection | DOAJ |
description | Abstract Purpose Eosinophilic esophagitis (EoE), a chronic immune-mediated progressive disease, causes dysphagia, food impaction, abdominal pain, vomiting, and heartburn. EoE requires long-term monitoring and can affect quality of life owing to its symptoms and associated emotional and social burden. This study aimed to understand patients’ experiences with EoE. Methods Semi-structured longitudinal interviews were conducted with patients from MESSINA, a phase 3 placebo-controlled trial evaluating benralizumab for EoE. Interviews were held at two different times to assess the impact of EoE on patients’ lives before and during trial participation. Data were analyzed qualitatively to develop detailed patient profiles. Results The MESSINA trial was terminated prematurely. Of the 34 patients recruited for the first interview, 15 (44%) completed the second interview and 11 patient profiles were developed. Patients were a demographically diverse group with varying experiences. The primary reported symptom was difficulty swallowing (n = 11), leading to serious consequences like choking and hospitalization (n = 2). Other symptoms included pain when swallowing (n = 7), reflux (n = 6), and stomachache (n = 6). In the second interview, most (n = 9) patients reported moderate improvements in symptoms, while others experienced symptom recurrence or worsening. EoE had a significant negative impact on social and emotional well-being, and professional lives. Trial participation improved emotional well-being for some; however, concerns about the need for ongoing treatment were noted. Conclusion This study highlighted emotional and social burdens of EoE. The encouraging feedback on study participation underscores the importance of patient insights in developing holistic management strategies for EoE. |
format | Article |
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institution | Kabale University |
issn | 2509-8020 |
language | English |
publishDate | 2025-01-01 |
publisher | SpringerOpen |
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series | Journal of Patient-Reported Outcomes |
spelling | doaj-art-0dced46ad2524add86ec32cf05d99c332025-01-12T12:26:02ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202025-01-019111010.1186/s41687-025-00836-xPatient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviewsCalvin N. Ho0Harald Fjällbrant1Evan S. Dellon2Cecilio Santander3Marc E. Rothenberg4Julie Bailey5Shehan McFadden6Jason Ritchie7Patient Centered Science, BioPharmaceuticals Medical, AstraZenecaLate-stage Respiratory & Immunology, BioPharmaceuticals R&D, AstraZenecaCenter for Esophageal Diseases and Swallowing, Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill School of MedicineDepartment of Gastroenterology and Hepatology, Hospital Universitario de La Princesa, Centro de Investigación Biomédica en Red de Enfermedades Hepáticas y Digestivas (CIBERehd), Instituto de Investigación Sanitaria Princesa (IIS-IP), Universidad Autónoma de Madrid (UAM)Division of Allergy and Immunology, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of MedicineIQVIAIQVIAIQVIAAbstract Purpose Eosinophilic esophagitis (EoE), a chronic immune-mediated progressive disease, causes dysphagia, food impaction, abdominal pain, vomiting, and heartburn. EoE requires long-term monitoring and can affect quality of life owing to its symptoms and associated emotional and social burden. This study aimed to understand patients’ experiences with EoE. Methods Semi-structured longitudinal interviews were conducted with patients from MESSINA, a phase 3 placebo-controlled trial evaluating benralizumab for EoE. Interviews were held at two different times to assess the impact of EoE on patients’ lives before and during trial participation. Data were analyzed qualitatively to develop detailed patient profiles. Results The MESSINA trial was terminated prematurely. Of the 34 patients recruited for the first interview, 15 (44%) completed the second interview and 11 patient profiles were developed. Patients were a demographically diverse group with varying experiences. The primary reported symptom was difficulty swallowing (n = 11), leading to serious consequences like choking and hospitalization (n = 2). Other symptoms included pain when swallowing (n = 7), reflux (n = 6), and stomachache (n = 6). In the second interview, most (n = 9) patients reported moderate improvements in symptoms, while others experienced symptom recurrence or worsening. EoE had a significant negative impact on social and emotional well-being, and professional lives. Trial participation improved emotional well-being for some; however, concerns about the need for ongoing treatment were noted. Conclusion This study highlighted emotional and social burdens of EoE. The encouraging feedback on study participation underscores the importance of patient insights in developing holistic management strategies for EoE.https://doi.org/10.1186/s41687-025-00836-xEosinophilic esophagitisBenralizumabPatients’ experiencesQualitative patient interviewImpact on daily life |
spellingShingle | Calvin N. Ho Harald Fjällbrant Evan S. Dellon Cecilio Santander Marc E. Rothenberg Julie Bailey Shehan McFadden Jason Ritchie Patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviews Journal of Patient-Reported Outcomes Eosinophilic esophagitis Benralizumab Patients’ experiences Qualitative patient interview Impact on daily life |
title | Patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviews |
title_full | Patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviews |
title_fullStr | Patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviews |
title_full_unstemmed | Patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviews |
title_short | Patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in-trial qualitative interviews |
title_sort | patient experience with eosinophilic esophagitis symptoms and impacts on daily life based on in trial qualitative interviews |
topic | Eosinophilic esophagitis Benralizumab Patients’ experiences Qualitative patient interview Impact on daily life |
url | https://doi.org/10.1186/s41687-025-00836-x |
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