Related Experiment Video
Updated: Jun 19, 2025
Author Spotlight: Investigating the Pathophysiology of Eosinophilic Esophagitis
Published on: May 10, 2024
Long-term durability between parent and child patient-reported outcomes in eosinophilic esophagitis
Lisa J Martin1, Xue Zhang2, Mirna Chehade3
1Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; University of Cincinnati College of Medicine, Cincinnati, Ohio.
Insights
Parent and child reports on eosinophilic esophagitis (EoE) symptoms show strong agreement over time. This confirms that parent-reported outcomes are reliable for assessing pediatric EoE, even in long-term studies.
Area of Science:
- Pediatric gastroenterology
- Clinical research methodology
- Patient-reported outcomes (PROs)
Background:
- Children with eosinophilic esophagitis (EoE) cannot self-report symptoms, necessitating parent surrogate reports.
- Previous studies suggested parent-child alignment for EoE PROs, but longitudinal stability remained unclear.
Purpose of the Study:
- To assess the agreement and longitudinal stability of PROs between children with EoE and their parents.
- To evaluate the reliability of parent reports as a proxy for pediatric EoE symptoms.
Main Methods:
- A 5-year observational trial involving 292 parent-child dyads who completed 723 questionnaires.
- Assessed agreement and change in Pediatric Eosinophilic Esophagitis Symptom Score version 2 (PEESSv2.0) and PedsQL-EoE using correlation and Bland-Altman analyses.
- Utilized linear mixed models to evaluate clinical factors influencing PROs and their agreement.
Main Results:
- Strong correlations observed between child and parent reports for both PEESSv2.0 (0.83) and PedsQL-EoE (0.74).
- Parent-reported PedsQL-EoE scores remained stable longitudinally, while child-reported scores improved.
- Greater discrepancies in PedsQL-EoE reports were linked to younger age and driven by psychosocial domains.
Conclusions:
- Significant longitudinal alignment exists between child and parent reports for EoE PROs.
- Parental reports serve as a stable and reliable proxy for objective EoE symptom assessment in children.
- Findings support the use of parent-reported outcomes in long-term pediatric EoE management and research.
Background:
Because young children cannot self-report symptoms, there is a need for parent surrogate reports. Although early work suggested parent-child alignment for eosinophil esophagitis (EoE) patient-reported outcomes (PROs), the longitudinal alignment is unclear.
Objective:
We sought to assess the agreement and longitudinal stability of PROs between children with EoE and their parents.
Methods:
A total of 292 parent-child respondents completed 723 questionnaires over 5 years in an observational trial in the Consortium of Eosinophilic Gastrointestinal Disease Researchers. The change in and agreement between parent and child Pediatric Eosinophilic Esophagitis Symptom Score version 2 (PEESSv2.0) and Pediatric Quality of Life Eosinophilic Esophagitis Module (PedsQL-EoE) PROs over time were assessed using Pearson correlation and Bland-Altman analyses. Clinical factors influencing PROs and their agreement were evaluated using linear mixed models.
Results:
The cohort had a median disease duration equaling 3.7 years and was predominantly male (73.6%) and White (85.3%). Child and parent PEESSv2.0 response groups were identified and were stable over time. There was strong correlation between child and parent reports (PEESSv2.0, 0.83;PedsQL-EoE, 0.74), with minimal pairwise differences for symptoms. Longitudinally, parent-reported PedsQL-EoE scores were stable (P ≥ .32), whereas child-reported PedsQL-EoE scores improved (P = .026). A larger difference in parent and child PedsQL-EoE reports was associated with younger age (P < .001), and differences were driven by psychosocial PRO domains.
Conclusions:
There is strong longitudinal alignment between child and parent reports using EoE PROs. These data provide evidence that parent report is a stable proxy for objective EoE symptoms in their children.
Related Concept Videos
01:21Barrett Esophagus-II: Clinical Manifestations and Management
To diagnose Barrett's esophagus, healthcare providers often recommend an endoscopy for those showing symptoms of acid reflux. The procedure...
01:29Gastroesophageal Reflux Disease II: Clinical Features and Management
Clinical Manifestations
GERD presents itself in a multitude of ways, with symptoms varying from person to person. The hallmark symptoms are...
01:21Barrett Esophagus-I: Introduction
This constant acid exposure transforms the esophagus's pink mucosal lining (stratified squamous epithelium) into a type of lining more...
01:29Endoscopic Procedures I: Esophagogastroduodenoscopy
During an EGD, the endoscope can be used to:
01:26Esophageal Strictures-II: Clinical Features and Management
Healthcare providers should gather a comprehensive medical history and conduct a physical examination for diagnosis. If esophageal stricture is...
01:30Esophageal Strictures-I: Introduction
Etiology
The primary cause of esophageal strictures is long-standing gastroesophageal reflux disease (GERD), accounting for about 70 to 80% of adult cases. Chronic acid reflux can lead to injury and scarring of the esophageal lining, culminating in...