J. L. Morsberger1, H. L. Short1, K. J. Baxter1, C. Travers2, M. S. Clifton1, M. M. Durham1, M. V. Raval1 1Emory University School Of Medicine,Division Of Pediatric Surgery, Department Of Surgery, Children’s Healthcare Of Atlanta,Atlanta, GA, USA 2Emory University School Of Medicine,Department Of Pediatrics,Atlanta, GA, USA
Introduction: With improved survival of patients with congenital anomalies, long-term outcomes including quality of life (QoL) assessment are needed. The aim of this study was to determine long-term outcomes for congenital diaphragmatic hernia (CDH) patients including QoL measures, gastrointestinal symptom burden, surgical reoperation rates, and current health status.
Methods: We performed a retrospective review of surviving patients who underwent CDH repair between 2007 and 2014 at a quaternary children’s hospital. Phone surveys of parents were conducted using two validated measures (Pediatric Quality of Life Inventory (PedsQL) and PedsQL Gastrointestinal Symptoms Module). Additional outcomes of interest were collected including subsequent operations and current health status. Associations with QoL were tested using Wilcoxon Rank-Sum tests and Pearson correlation coefficients, when appropriate.
Results: Of 102 CDH patients identified, 56 families (54.9%) were reached with 46 (82.1%) agreeing to participate. The mean age at follow up was 5.8 years. 28 patients (60.9%) had thoracoscopic repair, 10 (21.7%) required ECMO, and 11 (23.9%) had a recurrence. For the overall cohort, median PedsQL score was 91.8 (scale 0-100) with a physical health summary score of 93.8 and a psychosocial health summary score of 91.7. Median PedsQL gastrointestinal score was 95.8. Statistically significant differences were found in PedsQL scores when stratified by surgical approach and defects where the stomach was found in the thoracic cavity (stomach up). No difference was found when stratified by defect side (left vs right), patch vs primary repair, prenatal diagnosis, ECMO, or recurrence (Figure). Older patient age correlated with worse school functioning and heartburn symptoms (Pearson Coefficient -0.31 (p=0.03) for both).
Conclusion: Children with CDH have reassuring overall and gastrointestinal QoL scores. Our study shows higher QoL scores in patients who undergo thoracoscopic repair and no difference in outcomes based on recurrence. Given the correlation between older age and poor school function, even longer follow up of patients with CDH is warranted.
