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What patients with eosinophilic esophagitis may not share with their providers: a qualitative assessment of online health communities.

  • Chang, Joy W1
  • Chen, Vincent L1
  • Rubenstein, Joel H1, 2
  • Dellon, Evan S3
  • Wallner, Lauren P4
  • De Vries, Raymond5
  • 1 Division of Gastroenterology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.
  • 2 Veterans Affairs Center for Clinical Management Research, Ann Arbor VA Medical Center, Ann Arbor, MI, USA.
  • 3 Division of Gastroenterology, Center for Esophageal and Swallowing Disorders, University of North Carolina, Chapel Hill, NC, USA.
  • 4 Division of General Medicine, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.
  • 5 Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI, USA.
Published Article
Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus
Publication Date
Jun 15, 2022
DOI: 10.1093/dote/doab073
PMID: 34718475


Little 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. We 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. Of 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. Online 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. © The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Diseases of the Esophagus.

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