PATIENT-REPORTED EXPERIENCE OF EOSINOPHIL-DRIVEN DISEASES ON ONLINE PLATFORMS: SOCIAL LISTENING ANALYSIS INSIGHTS

Abstract

<h3>Introduction</h3> Severe eosinophilic asthma (SEA), eosinophilic granulomatosis with polyangiitis (EGPA), and hypereosinophilic syndromes (HES), are eosinophil-driven diseases characterized by persistently high eosinophil numbers that cause damage to tissues and organs. Online discussions relating to SEA, EGPA, and HES, were identified to gain insight into how patients and caregivers use social media to discuss these conditions. <h3>Methods</h3> Posts by patients and caregivers relating to their experiences with SEA, EGPA, and HES, made on social platforms between January 1, 2019 and May 31, 2020 were collected from social media sites. Comments for EGPA and HES were collected in English, French, or German; exploratory analysis comments for SEA were collected in English only. Results were classified into key themes (each post could involve multiple themes) and analyzed. <h3>Results</h3> In total, 509 comments relating to SEA, 746 to EGPA, and 39 to HES, with consent to publish, were identified. Fewer posts relating to HES were included in this analysis due to difficulties obtaining consent. People used social media for discussions with others as an additional support in disease management. Themes were identified for all three diseases (e.g. personal experience, diagnosis) (<b>Table</b>). The most commonly used social media sites were easily accessible, and often commonly used outside of discussing health topics (e.g. Facebook, Twitter, Reddit, and HealthUnlocked). <h3>Conclusion</h3> Online platforms are an important complementary platform for patients with eosinophil-driven diseases to share personal experiences and build a sense of community, which may help patients and caregivers feel empowered when managing these conditions.