High Patient Disease Burden in a Cross-sectional, Multicenter Contact Registry Study of Eosinophilic Gastrointestinal Diseases

Abstract

To characterize patient-reported symptoms and comorbidities by type of eosinophilic gastrointestinal disease (EGID) and compare the collected data among the evaluated patient population.A total of 715 pediatric and adult patients with a diagnosis of EGID were enrolled in the Consortium of Eosinophilic Gastrointestinal Disease Researchers Contact Registry and completed the study questionnaire between 2015 and 2018. EGIDs consisted of eosinophilic esophagitis (EoE) or non-EoE EGIDs, which consist of eosinophilic gastritis, eosinophilic gastroenteritis, and eosinophilic colitis.This study was a cross-sectional study. A 25-item questionnaire was curated to collect demographic data, types of EGID, symptoms, and management. Additionally, extraintestinal symptoms and various comorbidities were recorded, such as vitamin deficiencies and psychosocial comorbidities.Most patients who completed the questionnaire had EoE only (80%; n = 575), in comparison with those with non-EoE EGIDs with or without EoE (n = 210). The sex-distribution illustrated that boys (57%) and younger patients reported EoE only, in comparison with non-EoE EGIDs (16- vs 19-year-olds), which was statistically significant. Nausea (21%) and upper abdominal pain (23%) were the most prominent symptoms reported. Of note, the frequency of symptoms was higher among those with non-EoE EGIDs. Furthermore, patients with non-EoE EGIDs had a higher percentage of vitamin deficiencies (49.7%) and concomitant gastroparesis (27.3%). Every patient in the study reported extraintestinal symptoms, but those with non-EoE EGID reported an increased frequency (14 to 21% experienced weekly symptoms) and psychosocial concerns (16% to 26% experienced weekly symptoms). Adult EoE patients had a higher proportion of feeling isolated on a daily or weekly basis when treated with specific food-elimination diets. Similar outcomes were seen in both pediatric and adult EoE patients being treated with elemental diet therapy. After adjusting for food avoidance behaviors and diarrhea frequency, both specific food-elimination (odds ratio: 2.4) and elemental diet (odds ratio: 1.9) were still associated with at least weekly feelings of isolation for participants with EoE only.As a whole, patients with EGID have a high frequency of extragastrointestinal symptoms and a high reporting rate of comorbidities. When examining these disorders closely, patients with non-EoE EGIDs had more severe symptoms and a higher occurrence of nutritional, physical, and psychosocial comorbidities, in comparison with those with EoE only.From a diagnostic perspective, with this study, the authors illustrate poignant differences in the symptom presentation and laboratory findings (vitamin deficiencies) that may assist health care providers in determining the accurate diagnosis between EGIDs. Additionally, with this study, the authors are the first to highlight how impactful treatment plans are on patients psychosocially. EoE and other EGID disorders, when treated with restrictive dietary modifications, can have a negative impact on patients, particularly adolescents, and their social interactions. This outcome indicates the importance of a multidisciplinary approach in treatment and encourages more research to look for options that are not perceived as burdensome by the patient.