ArticleDiseases of the esophagus : official journal of the International Society for Diseases of the Esophagus2022
What patients with eosinophilic esophagitis may not share with their providers: a qualitative assessment of online health communities.
Article in Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 17 citations in OpenAlex.
- A new paradigm for esophageal disease management: the application and future prospects of Shared Decision Making (SDM).World journal of surgical oncology · 2026Review
- Treatment patterns of eosinophilic esophagitis in the biologic era-a real-world analysis.Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus · 2026Article
- Shared decision making in Eosinophilic esophagitis: Integrating physician and patient perspectives.PloS one · 2026Article
- The Therapeutic Pipeline for Eosinophilic Esophagitis: Current Landscape and Future Directions.Pharmaceuticals (Basel, Switzerland) · 2025Review
- Recommendations for the diagnosis and management of eosinophilic esophagitis in adults and children in Canada: a Delphi consensus project.Journal of the Canadian Association of Gastroenterology · 2025Review
- Recommendations for the diagnosis and management of eosinophilic esophagitis in adults and children in Canada: a Delphi consensus project.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2025Review
- Exploring X: barriers to care for eosinophilic esophagitis.Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus · 2025Article
- Patient-reported symptoms and burden of eosinophilic esophagitis: evidence from real-world clinical practice.BMC gastroenterology · 2024Article
- Artificial Intelligence Chatbot Shows Multiple Inaccuracies When Responding to Questions About Eosinophilic Esophagitis.Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association · 2024Article
- Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey.Gastro hep advances · 2024Article
- Development of a Practical Guide to Implement and Monitor Diet Therapy for Eosinophilic Esophagitis.Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association · 2023Review
- Psychological Considerations for Food Intolerances: Celiac Sprue, Eosinophilic Esophagitis, and Non-Celiac Gluten Sensitivity.Gastroenterology clinics of North America · 2022Review
- Dietary Treatment for Children and Adults with Eosinophilic Esophagitis: Which Patient and Which Doctor Is It Suitable for?Inflammatory intestinal diseasesReview
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundLittle is known about how patients with eosinophilic esophagitis (EoE) experience their symptoms, receive care, and cope with their disease. Patients commonly seek peer support from online communities, which provide insights on unmet needs and barriers to care. We performed a qualitative analysis of electronic health forums to characterize patient-to-patient conversations about EoE symptoms and the experience of disease.
methodsWe identified three publicly accessible electronic health forums hosting EoE communities. Conversation threads posted between July 2018 and June 2020 were coded using emergent and a priori codes based on the THRIVE conceptual framework of coping with chronic illness.
resultsOf 659 threads (4,933 posts) collected over two years, a random sample of 240 threads (30 per 3-month quarter) were selected for analysis. Thematic saturation was reached after 172 threads. Patient experience of EoE was driven by their perspectives in four key domains: (i) perception of EoE as episodic rather than chronic, (ii) treatment choices, (iii) personal definitions of success in the disease, and (iv) views of providers.
conclusionOnline health communities are a valuable and unfiltered source of patient perspectives that can be used to understand patient needs and goals. EoE patients interpret their disease as sporadic events and lack reliable sources of knowledge, which may influence how patients prioritize treatment. If providers are to succeed in providing high-quality EoE care, they need to equip themselves with evidence-based knowledge, engage in shared decision making, and look outside of clinical settings to recognize barriers to disease management.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.