INTRODUCTION: The disease burden of eosinophilic esophagitis (EoE) can be highly variable, with some patients reporting persistent symptoms that may represent significant daily physical and emotional burdens. The impact of EoE on health-related quality of life (HRQoL) has not been well documented.
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) with EoE in the USA who were recruited from the Campaign Urging Research for Eosinophilic Diseases Foundation (February 2–22, 2021) . The impact of EoE on patients ’HRQoL was assessed using patient- and parent proxy-reported outcome instruments.
RESULTS: Overall, 395 participants (caregivers of adolescents, n=211; adults, n=184) completed the survey. Compared with adolescents, a higher proportion of adults reported having problems falling or staying asleep because of their EoE during the past 4 weeks (adolescents, 50.2%; adults, 62.5%); ‘quite a bit’ of interference with normal social activities (adolescents, 10.9%; adults, 20.7%); and feeling worn out ‘all of the time’, ‘most of the time’ or ‘a good bit of the time’ (adolescents, 40.3%; adults, 64.1%). Adolescents reported feeling worried or sad ’sometimes’ (34.1%and 34.1%, respectively), ‘often’ (17.5% and 11.4%, respectively) or ‘almost always’ (6.2% and 1.9%, respectively)over the past 7 days. Adults reported feeling anxious or depressed ’sometimes’ (28.8% and 27.7%, respectively),‘often’ (26.1% and 13.6%, respectively) or ‘always’ (8.7% and 4.3%, respectively) over the past 7 days. In terms of quantitative scores, the impact of EoE on sleep, social functioning, anxiety and depression was similar in adolescents and adults; however, mean (standard deviation) vitality scores were greater for adolescents versus adults (50.3 [23.7] vs 36.1 [22.0]). Standardized mean derived scores for anxiety and depression in adolescents and adults with EoE were higher than those in the general population. In total, 81.2% of adolescents and 55.9% of adults missed school or work owing to their EoE over the past 12 months; EoE also had an impact on participants’ other life activities.
DISCUSSION: EoE had a substantial negative impact on multiple HRQoL dimensions, affecting work or schoolwork and social and family life in a high proportion of patients over the past year. Additional studies are needed to further explore HRQoL in patients with EoE.
