Long-Term Outcomes of Patients with Complex Gastroschisis: a Single-Center Retrospective Cohort Study

Complex gastroschisis (cGS) is associated with substantial neonatal morbidity, but long-term outcome data remain limited.

To evaluate long-term outcomes of patients with cGS.

We performed a retrospective single-center cohort study of patients with cGS treated between 2008 and 2016. Clinical data were obtained from the electronic health record. Long-term parent-reported outcomes were assessed by telephone survey using the PedsQL™ Quality of Life, Cognitive Functioning, and Gastrointestinal Symptoms Scales. Scores were compared with published reference data from patients with simple gastroschisis and healthy children.

Fifty-seven patients with cGS were included, with no mortality and a median follow-up of 9.7 years. After discharge, nine patients (15.8%) were hospitalized for nonoperative small bowel obstruction, and 16 (28.1%) underwent at least one abdominal operation. For most patients growth improved over time. Twenty-three parents completed the survey, reporting overall quality-of-life to be similar to literature-based simple gastroschisis and healthy reference populations, whereas cognitive functioning and selected gastrointestinal symptom domains were worse, particularly diarrhea, constipation, and reflux-related symptoms. Attention-deficit/hyperactivity disorder was the most commonly reported psychiatric diagnosis, present in 8 of 23 surveyed patients (34.8%).

Children with cGS have excellent long-term survival but substantial ongoing morbidity. Despite frequent catch-up growth and preserved overall parent-reported quality of life, many patients require abdominal reoperations, have persistent gastrointestinal symptoms, and have worse parent-reported cognitive functioning compared to controls. These findings support the need for longitudinal multidisciplinary follow-up with attention to bowel function and neurodevelopment.