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

Abstract

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. 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. 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. 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.