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Health-Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Klinnert, Mary D.*; Silveira, Lori; Harris, Rachel; Moore, Wendy; Atkins, Dan§; Fleischer, David M.§; Menard-Katcher, Calies; Aceves, Seema||; Spergel, Jonathan M.; Franciosi, James P.#; Furuta, Glenn T.

Journal of Pediatric Gastroenterology and Nutrition: September 2014 - Volume 59 - Issue 3 - p 308–316
doi: 10.1097/MPG.0000000000000451
Original Articles: Gastroenterology

Objectives: Existing treatments for pediatric eosinophilic esophagitis (EoE) effectively reduce inflammation. The impact of treatment on health-related quality of life (HRQoL) over time for pediatric patients with EoE and their families, however, has not been systematically assessed. We hypothesized that individualized multidisciplinary treatment would improve both child and family HRQoL over time, with improvements associated with decreased symptom severity.

Methods: Children with EoE treated in 4 tertiary care centers were enrolled. Baseline assessments occurred at the time of patients’ first evaluation; follow-up assessments occurred at 2 and 6 months after baseline. Presence and severity of 8 EoE symptoms were measured. HRQoL was measured with the Pediatric Quality of Life Inventory parent proxy report, child self-report (CR), and Family Impact Module (FIM). Statistical analyses used mixed-effects modeling to test changes over time for child and family HRQoL.

Results: Ninety-seven children were enrolled (ages 2–18 years, mean age 7.7 years ± 4.8, 78% boys, 80% white). Baseline mean symptom number was 3.5 (standard deviation 2.3), and symptom severity was 5.5 (standard deviation, 4.5). HRQoL scores were significantly related to symptom scores (P < 0.001). EoE symptom severity decreased during the study (P = 0.03). Pediatric Quality of Life Inventory parent proxy Total and FIM Total scores improved from baseline to 6 months (respectively, adjusted means 78.4 vs 81.0, P = 0.0006; 68.9 vs 70.1, P = 0.03). Interactions with baseline symptom severity revealed that subjects with lowest symptom severity showed the most improved HRQoL scores (P = 0.0013).

Conclusions: HRQoL improved during the course of evaluation and treatment, with positive changes being strongest for patients with less symptom severity at baseline.

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*National Jewish Health, Denver, and University of Colorado School of Medicine, Aurora

National Jewish Health, Denver and University of Colorado School of Public Health, Aurora

Digestive Health Institute, Gastrointestinal Eosinophilic Diseases Program, Children's Hospital Colorado and University of Colorado School of Medicine, Aurora

§National Jewish Health, Denver and Children's Hospital Colorado and University of Colorado School of Medicine, Aurora

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

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

#Division of Gastroenterology, Hepatology, and Nutrition, Nemours Children's Hospital and University of Central Florida College of Medicine, Orlando.

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

Received 31 July, 2013

Accepted 22 May, 2014

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, 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 National Institutes of Health views.

The authors report no conflicts of interest.

© 2014 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,