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Symptom Burden and Quality of Life Over Time in Pediatric Eosinophilic Esophagitis

Klinnert, Mary D.*,†; Atkins, Dan*,†,‡; Pan, Zhaoxing; Franciosi, James P.§,||; Aceves, Seema S.; Spergel, Jonathan M.#; Furuta, Glenn T.†,‡

Journal of Pediatric Gastroenterology and Nutrition: December 2019 - Volume 69 - Issue 6 - p 682–689
doi: 10.1097/MPG.0000000000002479
Original Article: Gastroenterology: Eosinophilic GI Disorders

Objective: The aim of the study was to evaluate whether children with eosinophilic esophagitis (EoE) demonstrated an association between health-related quality of life (HRQoL) improvements and symptom reduction during 12 months of treatment; to examine age-related EoE discrete symptom presentation; and to describe residual symptom and HRQoL burden.

Methods: Children ages 2 to 18 years with EoE were assessed at the onset of treatment and 12 months later at 4 tertiary care centers. Continuous measures of symptoms and symptom severity were based on 8 discrete EoE symptoms. HRQoL was measured with the Pediatric Quality of Life (PedsQL) parent-proxy (PR) report, child self-report (CR), and Family Impact Module. Mixed-effects modeling was used to test changes over time for symptom burden and child and family HRQoL.

Results: One hundred nine children were followed (ages 2–18 years, mean age 7.6 [4.6] years, 77% boys, 87% white). Baseline symptom number mean was 3.5 (standard deviation = 2.3, range 0–8) and symptom severity mean was 5.5 (standard deviation = 4.3, range 0–24). EoE symptom number and symptom severity decreased significantly over the 12 months (P = 0.013, P < 0.001, respectively). PedsQL PR Total, Physical, Psychosocial, and Family Impact scores all improved significantly (P = 0.001, 0.012, 0.012, 0.015, respectively) but PedsQL child self-report scores did not. Symptom reduction correlated with PR PedsQL improvement (P = 0.01). Few discrete symptoms completely remitted, but lowered severity ratings indicated clinically significant improvement.

Conclusions: Year-long treatment in multidisciplinary tertiary centers reduced most symptoms and improved parent-reported HRQoL in children with EoE. The frequency of residual symptoms and persistently lower HRQoL, however, underscore the chronic nature of pediatric EoE.

*National Jewish Health, Denver

University of Colorado School of Medicine

Children's Hospital Colorado, Gastrointestinal Eosinophilic Diseases Program, Aurora, CO

§Cincinnati Children's Hospital Medical Center, Cincinnati, OH

||Nemours Children's Hospital and University of Central Florida College of Medicine, Orlando, FL

Rady Children's Hospital and University of California, San Diego, CA

#Children's Hospital of Philadelphia and Perelman School of Medicine at University of Pennsylvania, Philadelphia, PA.

Address correspondence and reprint requests to Mary D. Klinnert, PhD, Department of Pediatrics, National Jewish Health, 1400 Jackson St, Denver CO, 80206 (e-mail:

Received 15 November, 2018

Accepted 11 August, 2019

Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (

This research was conducted with support from the Investigator-Sponsored Study Program of AstraZeneca, LP and was supported by the National Institutes of Health/National Center for Research Resources Colorado CTSI UL1 RR025780 and National Institutes of Health 1K24DK100303 (G.T.F.). Contents are the authors’ sole responsibility and do not necessarily represent official NIH views.

J.M.S. is consultant for Regeneron, DBV Technologies, and receives royalties from UptoDate and grant support from DBV Technology, AImmune Therapeutics, NIH, and EATS foundation. J.P.F. receives royalties from Cincinnati Children's Hospital Medical Center and MAPiTrust. S.S.A. is a consultant for Regeneron and has a UCSD patent licensed to Shire Pharma. G.T.F. is a consultant for Shire, receives royalties from UpToDate, and is a co-founder of EnteroTrack. The remaining authors report no conflicts of interest.

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,