OBJECTIVES: The impact of eosinophilic esophagitis (EoE) on the daily life and ability to function in adolescents and adults with EoE in the United States of America was examined.
METHODS: This non-interventional, cross-sectional, web-based survey included adolescents (aged 11–17 years [caregiver-reported]) and adults (aged ≥ 18 years) with EoE. Health-related quality of life (HRQoL) was assessed using the Short Form Health Survey (vitality and social functioning) and the European Health Interview Survey (sleep). Scores for the survey responses were on a scale of 0 to 100; higher scores indicated better performance in that HRQoL domain. Anxiety and depression were assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. Higher PROMIS scores indicated higher levels of anxiety and depression; a score of 50.0 represented the level in general population without EoE. The sources and impact of EoE-associated perceived stigma were also examined.
RESULTS: Overall, 211 caregivers and 184 adults completed the survey. EoE had a slightly lower impact on the domains of HRQoL assessed in adolescents compared with adults (adolescent and adult scores, respectively: vitality [50.3 and 36.1]; social functioning [64.0 and 62.4]; sleep [55.7 and 52.0]). Anxiety (scores: 54.8 and 59.7) and depression (scores: 54.5 and 56.3) in adolescents and adults, respectively, were higher than in the general population. Most participants reported experiencing perceived stigma, which was most commonly from family, friends, classmates, or healthcare professionals.
CONCLUSIONS: Patients with EoE experience impaired HRQoL, including emotional and psychological burdens as well as perceived stigma.
