Hashing out current social media use in eosinophilic esophagitis

Summary Background Patients affected by chronic illnesses have increasingly turned to social media to gather disease-related information and connect with other patients. Eosinophilic esophagitis (EoE) is a chronic disease with rapidly evolving management options. The aims of this study are to describe the current use of social media in EoE patients and caregivers, evaluate whether use of social media to learn about EoE is associated with higher medical knowledge of this disease, and evaluate social media factors that could result in improved patient and caregiver disease understanding. Methods We surveyed individuals 18 years or older in July 2020 who identified as either having EoE, or as being a caregiver for someone with EoE, through an invitation link sent to email subscribers of the American Partnership for Eosinophilic Disorders. Results Of the 212 survey responders, 82.5% used social media to learn about EoE. Caregivers were more likely to use social media than patients (OR 2.30, 95% CI 1.11–4.76). Social media use was not associated with higher knowledge of EoE. Distrust of posted content was the largest barrier to use and 87.7% of responders believed that physician contribution to posts would enhance the quality of information. Conclusions In one of the first known studies to evaluate use of social media in the context of EoE, we found that a majority of patient and caregiver respondents use social media to learn about EoE. This highlights the potential opportunity to leverage social media to provide current and accurate EoE educational content for patients and caregivers.