S487 What Patients With Eosinophilic Esophagitis May Not Share with Their Providers: A Qualitative Assessment of Online Health Communities

Abstract

Introduction: Little is known about how patients with eosinophilic esophagitis (EoE) experience and describe their symptoms, receive care, and cope with their chronic disease, which may impact adherence to treatment, disease control, and quality of life. Patients commonly seek peer support from online health communities and these virtual forums serve as unguarded data sources that provide raw insights on unmet needs and barriers to care and communication. We performed a qualitative analysis of electronic health forums to characterize patient to patient conversations about EoE symptoms and the experience of disease. Methods: We identified 3 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. Results: Of 659 threads (4,933 posts) collected over 2 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 4 key domains: 1) EoE as episodic rather than chronic: symptoms often described as “flares” or self-limited “attacks” rather than a constant problem; 2) treatment choices: medications as a quick fix for short-term symptoms versus elimination diet as a tailored maintenance therapy; 3) personal success: varied definitions of positive disease outcomes; and 4) views of providers: encountering physicians who lacked knowledge about the disease and its treatment and/or were unsupportive of patient choices (Table). Conclusion: Online health communities are a valuable and unfiltered source of patient perspectives and disease-related language that can be used to understand patient needs and goals, improve education, and facilitate communication. EoE patients interpret their disease as sporadic events, polarize treatments as short-term fixes or long-term commitments, have various definitions of disease success, and lack reliable sources of knowledge, which may influence how chronic treatment is prioritized and misjudged as nonadherence. If providers are to succeed in providing high-quality EoE care, they need to equip themselves with evidence-based knowledge, engage in collaboration and shared decision making with patients, and look outside of the clinical setting to recognize barriers to disease management.Table 1.: Representative quotations from key themes.