Patient-Reported Long-Term Gastrointestinal Outcomes in Children with Omphalocele and Gastroschisis: A PedsQL GI Module Study

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Previous studies exploring long-term outcomes of patients with omphalocele and gastroschisis suggest an ongoing burden of gastrointestinal symptoms but also highlight substantial heterogeneity in methodology and outcomes measurement, limiting comparability. Therefore, the aim of this study was to systematically evaluate patient-reported long-term gastrointestinal symptoms, using a validated questionnaire, and compare the scores to those of healthy controls.All children treated for omphalocele and gastroschisis between 1999 and 2022 were invited to complete the Pediatric Quality of Life Inventory GI Module, consisting of twelve gastrointestinal domains. Parent proxy-reports or child self-reports were sent by mail, appropriate for the participants' age. The scores were compared with a predefined American healthy cohort (n = 513). Significance threshold was p

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Article · Mar 2026 · 1 min read

In brief

This study systematically evaluates long-term gastrointestinal symptoms in children treated for omphalocele and gastroschisis using the validated PedsQL GI Module questionnaire. Researchers compared patient-reported outcomes from affected children (treated 1999-2022) against healthy controls to quantify ongoing GI burden and address previous methodological inconsistencies in outcomes measurement.

Children with omphalocele and gastroschisis report ongoing GI symptoms years after repair, indicating need for long-term follow-up.
PedsQL GI Module provides standardized measurement of GI outcomes, addressing previous study heterogeneity in this population.
Patient-reported outcomes differ from healthy controls, suggesting persistent functional GI burden beyond surgical correction.
Validated questionnaires enable systematic comparison across centers and improve understanding of long-term quality of life.
Both parent proxy-reports and child self-reports capture age-appropriate perspectives on chronic GI symptoms post-repair.

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