Alignment of parent- and child-reported outcomes and histology in eosinophilic esophagitis across multiple CEGIR sites

Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Research output: Contribution to journalArticlepeer-review

38 Scopus citations


Background: Patient-reported outcome metrics for eosinophilic esophagitis (EoE) have been developed and validated but not used in a multicenter pediatric population or systematically aligned with histology. Objective: We sought to understand (1) the potential of caregiver report to predict patient self-reported symptoms and (2) the correlation of patient-reported outcome domains with histology. Methods: Patients with EoE (n = 310) and their parents participating in the Consortium of Gastrointestinal Eosinophilic Disease Researchers (CEGIR) observational clinical trial were queried for baseline patient symptoms and quality of life (QOL) by using the Pediatric Eosinophilic Esophagitis Symptom Score, version 2 (PEESSv2.0), and the Pediatric QOL EoE module (PedsQL-EoE), and biopsy specimens were analyzed by using the EoE Histology Scoring System. Results: PEESSv2.0 parental and child reports aligned across all domains (r = 0.68-0.73, P <.001). PedsQL-EoE reports correlated between parents and children across ages and multiple domains (r = 0.48-0.79, P <.001). There was a tight correlation between symptoms on PEESSv2.0 and their effects on QOL both on self-report and parental report (P <.001). Self-reported symptoms on PEESSv2.0 (positively) and PedsQL-EoE (inversely) showed a weak correlation with proximal, but not distal, peak eosinophil counts and features and architectural tissue changes on the EoE Histology Scoring System (P <.05). Conclusions: Parents of children with EoE aged 3 to 18 years accurately reflected their children's disease symptoms and QOL. Self- and parent-reported symptoms correlate with proximal esophageal histology. Our data suggest that parental report in young children can function as an adequate marker for self-reported symptoms and that self-reported symptoms can reflect changes in tissue histology in the proximal esophagus. These findings should be considered during clinical trials for drug development.

Original languageEnglish (US)
Pages (from-to)130-138.e1
JournalJournal of Allergy and Clinical Immunology
Issue number1
StatePublished - Jul 2018


  • Consortium of Eosinophilic Gastrointestinal Disease Researchers
  • Eosinophil
  • eosinophilic esophagitis
  • eosinophilic oesophagitis
  • patient-reported outcomes
  • pediatric QOL EoE module
  • pediatric eosinophilic esophagitis symptom score
  • quality of life
  • symptoms
  • version 2

ASJC Scopus subject areas

  • Immunology and Allergy
  • Immunology


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