Quality of life for children with eosinophilic esophagitis: a comparison of patients’ and parents’ perceptions and associated factors using the PedsQL? 3.0 Eosinophilic Esophagitis Module

摘要

BackgroundEosinophilic esophagitis (EoE) is a chronic, immunemediateddisease of eosinophil-predominant inflammationand esophageal dysfunction. The Pediatric Qualityof Life InventoryTM 3.0 EoE Module is a validatedinstrument to measure quality of life (QL) in childrenages 2-18 with EoE, but no clinical research studies havebeen published using this survey. The objectives of thisstudy were to compare QL reported by patients withEoE to that reported by their parents, and to determinewhich factors predicted QL in this cohort.MethodsThe module was mailed or emailed to all eligible patients(physician diagnosed EoE while on a PPI medication for8+ weeks prior to endoscopy and >15 eosinophils/HPF atany level on histopathology) seen in the endoscopy unitfrom 10/2013-3/2014. QL was reported on a 0-100 pointscale with higher scores reflecting better QL. We gathereddata on demographics, duration of disease, number ofendoscopies, diet therapy, and steroid use. A general linearmodel approach was used to examine the impact ofpredictors.ResultsThirty-eight percent (23/61) of subjects responded. Theaverage age of the 18 boys and 5 girls was 12 [8-18]. Parentperceived quality of life (PPQL) was 70 [65-78] (median[25%-75%]); child reported quality of life (CQL) was 70[59-78] and was correlated to PPQL (r=0.697; p<0.001).Disease duration (3y [2-9]) predicted better CQL (3.6points per year; p=0.003). The significant factors for PPQLwere diet and parent’s symptoms score of child (PSS).Parents of children on a multi-food elimination dietreported PPQL 12 points lower than the parents ofchildren on milk-only elimination diets (p=0.05). A 1 pointimprovement in PSS was associated with a 0.5 pointincrease in PPQL (p=0.006).ConclusionsChild and parent QLs were in general agreement;however, there may be important differences betweenpredictors in the two groups. For children, longer durationof disease was associated with better QL and for parents, amore limited diet was significantly associated with poorerQL. Validation of these findings in larger populations isneeded, but the results highlight the importance of evaluatingQL as a clinical endpoint.