Department of Pediatric Surgery and Intensive Care, Erasmus MC-Sophia Children's Hospital, Room SP-3506, P.O. Box 2060, 3000, CB, Rotterdam, The Netherlands.
Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
Eur J Pediatr. 2019 Sep;178(9):1405-1412. doi: 10.1007/s00431-019-03417-5. Epub 2019 Jul 19.
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.
患有先天性腹裂的儿童在生命早期有很高的发病率，这可能会影响长期结果。我们使用纸质问卷确定了 2000 年至 2012 年出生的学龄儿童的父母报告的结果。将父母感知到的孩子的脆弱性和运动功能与荷兰参考数据进行比较；将认知、健康状况、生活质量和行为的父母评分与年龄、性别和母亲教育水平相匹配的对照组进行比较。在 77 名符合条件的参与者中，有 31 名（40%）返回了问卷。23 名（74%）儿童的父母报告运动功能正常。健康状况、生活质量和行为的总分与对照组无显著差异。患有先天性腹裂的儿童的认知得分较低（中位数（四分位距）；109（87-127））低于其匹配对照组（124（113-140）；p=0.04）。新生儿肠衰竭和父母感知到的脆弱性增加与认知评分较低有关（β-25.66（95%置信区间-49.41，-1.91）；-2.76（-5.27，-0.25））。结论：患有先天性腹裂的学龄儿童的父母报告的结果主要令人放心。临床医生和家长应意识到认知问题的风险较高，尤其是在新生儿肠衰竭或父母感知到的脆弱性增加的情况下。我们建议对患有先天性腹裂和新生儿肠衰竭的儿童进行多学科随访。已知：• 许多患有先天性腹裂的婴儿在生命早期经历发病率。• 5 岁以上患有先天性腹裂的儿童发育结果和日常功能的数据稀缺且存在冲突。新内容：• 接受先天性腹裂治疗的学龄儿童的父母报告运动功能、健康状况、生活质量和行为正常。• 患有先天性腹裂的儿童，尤其是患有肠衰竭的儿童，在学龄期可能有认知问题的风险。报告孩子更脆弱的父母也报告了孩子在学龄期有更多的认知问题。
