A recent study published in The Journal of Allergy and Clinical Immunology (JACI) reveals that parents can reliably report their child's eosinophilic esophagitis (EoE) symptoms over time. This finding is crucial for evaluating early-age interventions for EoE, a chronic, allergic disease affecting both children and adults.
Consistent Symptom Reporting by Parents
Researchers, including Lisa Martin, PhD, from Cincinnati Children's Hospital and collaborators from the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), evaluated 292 parent-child pairs. The participants completed the Pediatric Eosinophilic Esophagitis Symptom Score version 2.0 (PEESSv2.0) and the Pediatric Quality of Life Eosinophilic Esophagitis Module (PedsQL-EoE) annually for up to five years.
The study found a 97% correlation between parent and patient-reported outcomes related to symptoms. This consistency held across multiple follow-up visits, with some dyads participating in as many as nine visits over nearly four years. According to the study, whenever children can self-report, these metrics should be concurrently assessed.
Implications for Therapy Approvals
The U.S. Food and Drug Administration (FDA) relies significantly on self-reported outcomes for therapy approvals. The consistency and strength of parental proxy reporting may reduce the lag time between adult and pediatric approvals for innovative therapies, especially given that EoE can present early in life.
Age-Related Differences in Quality of Life Scoring
Inconsistencies between parent and child reporting were more common in subjective measures of quality of life, as reported in the PedsQL-EoE. Children were more likely than parents to report improvements in quality of life over time. These differences were more pronounced in younger children and were driven by PedsQL-EoE psychosocial domains.
The study suggests that these changes in child reporting, but not parent reporting, may be related to developmental changes in chronic disease coping or the stigma associated with reporting psychological symptoms.
Future Directions
These findings provide a potentially useful clinical trial readiness metric for studying early interventions and conducting maintenance trials. Future research will focus on gathering more data regarding Black patient-family experiences, which were underrepresented in this study.
