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Gastroschisis at school age: what do parents report?
Annelieke Hijkoop1, André B Rietman2,3, René M H Wijnen2
1Department of Pediatric Surgery and Intensive Care, Erasmus MC-Sophia Children's Hospital, Room SP-3506, P.O. Box 2060, 3000, CB, Rotterdam, The Netherlands. a.hijkoop@erasmusmc.nl.
Insights
School-aged children with gastroschisis generally have reassuring outcomes, but may face cognitive challenges. Neonatal intestinal failure and perceived vulnerability increase this risk, suggesting a need for multidisciplinary follow-up.
Area of Science:
- Pediatric Surgery
- Developmental Pediatrics
- Child Psychology
Background:
- Gastroschisis poses significant early-life morbidity risks for children.
- Long-term developmental outcomes and daily functioning data for gastroschisis survivors beyond age five are limited and inconsistent.
- Understanding the long-term impact of gastroschisis is crucial for effective clinical management and parental support.
Purpose of the Study:
- To evaluate parent-reported outcomes in school-aged children born with gastroschisis.
- To compare cognitive, motor, behavioral, and quality of life outcomes with normative data and matched controls.
- To identify factors associated with potential long-term challenges in gastroschisis survivors.
Main Methods:
- A cohort of school-aged children (born 2000-2012) treated for gastroschisis completed paper questionnaires.
- Parent-reported data on child vulnerability, motor function, cognition, health status, quality of life, and behavior were collected.
- Outcomes were compared with Dutch reference data and age/gender/education-matched controls.
Main Results:
- Parent-reported motor function, health status, quality of life, and behavior were comparable to control groups.
- Children with gastroschisis demonstrated significantly lower cognitive scores compared to matched controls (p=0.04).
- Neonatal intestinal failure and increased parent-perceived vulnerability were independently associated with lower cognitive scores.
Conclusions:
- Parent-reported outcomes for school-aged children with gastroschisis are largely positive.
- Cognitive deficits are a potential concern, particularly for children with a history of neonatal intestinal failure or higher perceived vulnerability.
- Multidisciplinary follow-up is recommended for school-aged children with gastroschisis, especially those with neonatal intestinal failure.
Abstract:
Children with gastroschisis are at high risk of morbidity in early life, which could affect long-term outcomes. We determined parent-reported outcomes in school-aged children born in 2000-2012, using paper questionnaires. Parent-perceived child vulnerability and motor function were compared with the Dutch reference data; parent-rated data on cognition, health status, quality of life, and behavior were compared with those of controls matched for age, gender, and maternal education level. Of 77 eligible participants, 31 (40%) returned the questionnaires. Parent-reported motor function was normal in 23 (74%) children. Total scores on health status, quality of life, and behavior did not differ significantly from those of matched controls. Children with gastroschisis had lower scores on cognition (median (interquartile range); 109 (87-127)) than their matched controls (124 (113-140); p = 0.04). Neonatal intestinal failure and increased parent-perceived vulnerability were associated with lower scores on cognition (β - 25.66 (95% confidence interval - 49.41, - 1.91); - 2.76 (- 5.27, - 0.25), respectively).Conclusion: Parent-reported outcomes of school-aged children with gastroschisis were mainly reassuring. Clinicians and parents should be aware of the higher risk of cognitive problems, especially in those with neonatal intestinal failure or increased parent-perceived vulnerability. We recommend multidisciplinary follow-up at school age of children with gastroschisis and neonatal intestinal failure. What is Known: • Many infants with gastroschisis experience morbidity in early life. • Data on developmental outcomes and daily functioning in children with gastroschisis beyond the age of 5 years are scarce and conflicting. What is New: • Parents of school-aged children treated for gastroschisis report normal motor function, health status, quality of life, and behavior. • Children with gastroschisis, especially those with intestinal failure, may be at risk for cognitive problems at school age. Parents who reported their child as being more vulnerable also reported more cognitive problems at school age.
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