Christie Avraamides, PhD1, Kristle L.. Lynch, MD2, Jaime Symowicz, PhD1, Catherine Mullaney, MHA1 1Med-IQ, Baltimore, MD; 2The University of Pennsylvania, Philadelphia, PA Introduction: We designed and implemented a social media educational campaign to promote awareness about eosinophilic esophagitis (EoE) and to empower patients who have symptoms of or have been diagnosed with EoE to advocate for their care. Methods: In November 2024, a content creator, who has a child with EoE, hosted an Instagram Live, during which she and a gastroenterologist specializing in EoE explained what EoE is, including symptoms and how to describe them to a healthcare provider (HCP), the diagnosis process, and treatment options. In December 2024, 4 content creators with connections to EoE and related healthcare topics (eg, person with EoE, parent of child with EoE, pediatric dietitian) posted content on Instagram, Facebook, and TikTok about EoE and its symptoms, along with a survey. Results: This social media campaign achieved more than 1.17 million views overall, including one viral video generating over 1 million views, and the live session garnered over 90,000 views. The campaign had over 19,100 engagements and 8,000 shares. The following themes were identified in the comments (n = 237): personal experiences (26%), medical challenges and interventions (20%), community support and empathy (12%), and information seeking (18%).
In total, 247 respondents participated in the survey. Among the respondents who identified themselves as a patient with EoE (n = 62), 79% stated that they had never heard of EoE before diagnosis, 39% had difficulty getting a diagnosis, and 30% did not receive a formal diagnosis for > 1 year after seeking care. Among caregiver respondents (n = 58), 51% stated that their child/loved one had symptoms for more than 2 years before being diagnosed, and 46% of respondents had difficulty getting a diagnosis. Respondents who had EoE symptoms but were undiagnosed (n = 127) reported experiencing the following symptoms: heartburn (75%), food stuck in the throat (70%), trouble swallowing (61%), nausea (57%), and abdominal pain (53%). More than half (63%) of these respondents have had symptoms for > 2 years, and 51% have discussed their symptoms with an HCP. Among those who have spoken to an HCP about their symptoms, 49% felt their symptoms were dismissed. Discussion: These results show how social media can effectively raise awareness about EoE while also uncovering information about the lived experiences of patients who have been diagnosed with or suspect they have EoE.
