Parents Can Reliably Report Their Child’s EoE Symptoms Over Time
Research By: Lisa Martin, PhD
Post Date: December 19, 2024 | Publish Date: November 2024
Findings show a level of consistency that can last the duration of clinical trials to evaluate early-age interventions
Early intervention can reduce the long-term complications of eosinophilic esophagitis (EoE), a chronic, allergic disease affecting children and adults. However, assessing whether treatments are working is challenging when younger children struggle to self-report symptoms as they change over time or with therapy adjustments.
In this study, published in the November 2024 issue of The Journal of Allergy and Clinical Immunology (JACI), Lisa Martin, PhD, and collaborators from the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) determined that parents can accurately report objective symptom changes over multiple years.
The investigators evaluated 292 parent-child respondents who annually completed two EoE questionnaires, the Pediatric Eosinophilic Esophagitis Symptom Score version 2.0 (PEESSv2.0) and the Pediatric Quality of Life Eosinophilic Esophagitis Module (PedsQL-EoE), for up to 5 years.
Strong, consistent agreement on symptom scoring
Overall, the parent-child dyads answered 723 questionnaires. The team found a 97% correlation between parent and patient-reported outcomes related to symptoms, regardless of age and other factors. This consistency lasted across multiple follow-up visits, in some cases as many as nine visits spanning an average of nearly four years.
This finding is important because approvals for new therapies from the U.S. Food and Drug Administration rely significantly on self-reported outcomes—a long-standing challenge when care involves young children. With a deeper understanding of the stability and strength of parental proxy reporting, co-authors say it may be possible to reduce the lag time that often occurs between adult and pediatric approvals for innovative therapies.
“Given that EoE can present early in life, these findings provide support for use of parent-reported outcomes when collecting child self-report is not feasible. Whenever children can self-report, these metrics should be concurrently assessed,” the study states.
Age-related differences emerge in quality-of-life scoring
The inconsistencies in parent versus child reporting that the team did find tended to involve subjective measures of quality of life, as reported in the PedsQL-EoE instrument. Notably, children were more likely than parents to report quality of life improvements over time.
When children were younger, there were greater differences between the parent and child responses, and these differences were driven by PedsQL-EoE psychosocial domains.
“The reason for the changes in child but not parent reporting is unclear, but it may be related to the developmental changes in chronic disease coping or in the stigma associated with reporting psychological symptoms,” the study states.
Looking Forward
These findings provide a potentially useful clinical trial readiness metric for studying early inventions and for conducting much-needed maintenance trials. Next steps include seeking more data regarding Black patient-family experiences, which were reflected in this study, but in low numbers.
| Original title: | Long-term durability between parent and child patient-reported outcomes in eosinophilic esophagitis |
| Published in: | JACI |
| Publish date: | November 2024 |
Research By
I’m a researcher interested in statistical genetics, complex traits, statistical rigor and allergic disorders. I work with various collaborators to evaluate how genetics may contribute to patient outcomes.
