Natural History of Children with Eosinophilic Esophagitis (EoE) Transitioning to Adulthood: ACG/AstraZeneca Fellow Award

Abstract

Purpose: EoE is a chronic inflammatory condition affecting both children and adults. Little is known about the natural history of EoE as children progress into adulthood. The purpose of this study was to determine the prevalence of EoE symptoms and/or EoE treatment among adults diagnosed with EoE during childhood. Methods: This is a cross-sectional study of EoE patients from our institution's EoE registry. Patients now ≥ 18 yrs diagnosed with EoE during childhood were contacted by phone and a validated dysphagia questionnaire (Mayo Dysphagia Questionnaire-30) that measures symptoms over the past 30 days was administered. A dysphagia score was calculated based on responses to the MDQ-30. Scores ≥ 40 were considered positive, 15-40 indeterminate & scores ≤ 15 negative for dysphagia. Data on ongoing EoE treatment were also collected. Results: Of the 1400 patients in the EoE registry, a total of 140 EoE patients ≥ 18 yrs were identified and contacted via telephone. 53 completed all questions. Most common reasons for non-response were failure to answer phone calls and subject no longer living at the listed residence. 75% of EoE subjects were male, 98% Caucasian. Mean age was 20.5 ± 2.47 yrs, mean age at diagnosis of EoE was 13.5 ± 3.52 yrs. 90% of respondents had a history of atopic airway disease and 79% a history of food allergy. Dysphagia scores were positive in 2/53 (4%) & indeterminate in 4/53 (8%). However, 18/53 (34%) experienced difficulty swallowing within the past 30 days, whereas the remainder reported no swallowing difficulty. Ongoing medical EoE treatments were: topical steroids [3/53 (6%)] & investigational therapies [4/53 (8%)]. Additionally, 26/53 (49%) were on PPI therapy (indication unknown). 40/53 (76%) were following allergy directed diets. In total 45/53 (85%) were on at least one therapy (medical or dietary) for EoE. 8 (15%) subjects were on no therapy of which only one noted recent swallowing difficulty. 4 (8%) subjects were on PPI therapy alone, none of which complained of any difficulty swallowing. GERD symptoms (heartburn and/or regurgitation), were reported by 33/53 (62%). Of these 33 subjects, 20 (61%) were already on PPI therapy. Conclusion: The vast majority of young adults diagnosed with EoE during childhood continue to require pharmacological treatment and/or dietary modification for EoE. A substantial proportion of this patient population experiences ongoing swallowing difficulties that a standard dysphagia questionnaire fails to capture. These data suggest that EoE diagnosed during childhood remains a significant medical issue during early adulthood and better instruments are needed to measure EoE symptoms in this clinical setting.