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

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.