INTRODUCTION: Patients with chronic diseases such as eosinophilic esophagitis (EoE) may experience a range of symptoms while in the presence of other people. Patients may therefore develop a perceived negative societal disease stigma, whereby they feel discriminated against or viewed negatively because of their disease. There is currently limited literature assessing the perception of stigma in EoE.
METHODS: This was a non-interventional, cross-sectional, web-based survey of adolescents (11–17 years old; caregiver-reported) and adults (≥18 years old; self-reported) in the USA with EoE who were recruited from the Campaign Urging Research for Eosinophilic Diseases Foundation (February 2–22, 2021) . Participants were asked about theirsymptoms of EoE, the perceived psychological and emotional stigma, defined as feeling discriminated against or viewed negatively due to their EoE symptoms, and the impact of this perceived stigma.
RESULTS: Overall, 395 participants (caregivers of adolescents, n=211; adults, n=184) completed the survey. In adolescents, the most frequently reported symptoms of EoE at the time of the survey were abdominal pain (30.3%) and nausea(28.0%); in adults, these were difficulty or discomfort in swallowing solid food (47.3%) and avoiding food (42.9%). Overall, 59.7% of participants experienced problems with swallowing on ≥ 1 day in the past week, with more adults experiencing this symptom every day (adolescents, 6.2%; adults, 21.2%). The majority of patients reported experiencing stigma from another person over the past year owing to their EoE symptoms (adolescents,64.9%; adults, 59.9%). For adolescents, the most frequently reported sources of stigma were family (47.6%), friends (44.4%) and classmates (41.3%); for adults, these were family (73.6%), friends (63.2%) and health care providers (36.8%). The most frequently reported impact of stigma owing to EoE symptoms was “I limit and/or avoid some social events, including eating …” ; although more common in adults, a proportion of participants reported that they delayed seeking health care because of experiencing stigma (adolescents, 1.6%; adults, 28.3%).
DISCUSSION: In summary, both adolescents and adults reported substantial perceived stigma associated with their EoE symptoms. The most frequently reported sources of stigma were friends and family. In adults, a frequent source of stigma included healthcare providers, which resulted in some patients delaying seeking needed health care.
