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Long-term outcomes of patients with complex gastroschisis: A single-center retrospective cohort study
Felix R De Bie1, Camryn J Krumbhaar2, Yunliang Zhao3
1Department of Surgery, Duke University Health System, Durham, NC, USA.
Insights
Children with complex gastroschisis (cGS) have excellent survival but face ongoing health issues. Long-term follow-up reveals persistent gastrointestinal symptoms and cognitive challenges, despite good quality of life.
Area of Science:
- Pediatric Surgery
- Neonatal Outcomes
- Gastroenterology
Background:
- Complex gastroschisis (cGS) presents significant neonatal challenges.
- Limited data exist on the long-term health trajectories of cGS patients.
Purpose of the Study:
- To assess the long-term outcomes and quality of life in patients with complex gastroschisis.
- To compare outcomes with simple gastroschisis and healthy populations.
Main Methods:
- Retrospective single-center cohort study (2008-2016).
- Utilized electronic health records for clinical data.
- Employed parent-reported surveys (PedsQL™) for quality of life, cognitive, and gastrointestinal assessments.
Main Results:
- Fifty-seven cGS patients with a median 9.7-year follow-up showed no mortality.
- 15.8% experienced nonoperative small bowel obstruction; 28.1% required abdominal operations.
- Overall quality of life was comparable to controls, but cognitive function and GI symptoms (diarrhea, constipation, reflux) were worse. ADHD was diagnosed in 34.8%.
Conclusions:
- Children with cGS demonstrate high survival rates but experience considerable long-term morbidity.
- Despite catch-up growth and preserved overall quality of life, persistent GI issues and poorer cognitive function necessitate ongoing care.
- Highlights the need for multidisciplinary, longitudinal follow-up focusing on bowel function and neurodevelopment.
Background:
Complex gastroschisis (cGS) is associated with substantial neonatal morbidity, but long-term outcome data remain limited.
Purpose:
To evaluate long-term outcomes of patients with cGS.
Methodology:
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.
Results:
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%).
Conclusion:
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.