Long-term outcomes and quality of life after gastroschisis: A comprehensive review

Background : Gastroschisis, a congenital abdominal wall defect, has seen remarkable improvements in survival rates over recent decades, with current survival exceeding 90% in high-resource settings. As survival has improved, attention has shifted toward understanding long-term functional outcomes and quality of life (QoL) for survivors. Objectives : This comprehensive review examines the long-term functional outcomes following gastroschisis repair, including gastrointestinal, nutritional, and growth outcomes, and explores how surgical techniques influence prognosis. We analyze quality of life from multiple perspectives, including patient- and parent-reported outcome measures (PROMs and PREMs), disease-specific QoL tools, and developmental trajectories from childhood through adulthood. Methods : A narrative review of published literature examining long-term outcomes was conducted, focusing on gastrointestinal function, nutritional status, surgical complications, neurodevelopmental outcomes, and quality of life measures across different age groups and healthcare settings. Results : Long-term gastrointestinal complications occur in 20-40% of gastroschisis survivors, with adhesive small bowel obstruction being most common. Feeding difficulties and growth faltering affect approximately 10-30% of patients in early childhood but generally improve with age. Neurodevelopmental concerns are reported in 15-25% of survivors, though causality remains debated. Quality of life studies demonstrate generally favorable outcomes, though disease-specific measures reveal ongoing concerns about body image, gastrointestinal symptoms, and physical activity limitations. Surgical technique—particularly primary closure versus staged repair—may influence short-term outcomes but shows limited impact on long-term function. Structured multidisciplinary follow-up programs and timely transition to adult services are associated with improved outcomes, particularly for complex cases. Conclusions : While most gastroschisis survivors achieve good long-term outcomes and quality of life, a significant subset experiences ongoing challenges requiring continued medical attention. Implementation of standardized, disease-specific outcome measures and structured transition programs are essential for optimizing lifelong health and wellbeing.