Department of Paediatric Cardiology, University Hospital of Lille, Lille, France.
EA 2694 Public Health Epidemiology and Quality of Care, University of Lille, University Hospital of Lille, Lille, France.
Eur J Pediatr. 2021 Apr;180(4):1157-1167. doi: 10.1007/s00431-020-03850-x. Epub 2020 Oct 29.
The aim of this study was to evaluate the frequency of neurodevelopmental disorders (NDD) in children with significant congenital heart disease (CHD) and to determine associated factors to NDD and frequency of follow-up in developmental therapies. Two hundred and ten children with significant CHD aged from 6 to 66 months were enrolled over a period of six months. The Ages & Stages Questionnaire Third Edition in French (ASQ-3) was used to assess neurodevelopmental domains. NDD were defined if cut-off scores were ≤ - 1SD. - 1SD corresponded to "Monitor" range: children with minor or emerging disorders; - 2SD corresponded to "Refer" range: children exhibiting neurodevelopmental delays. Forty children were in "Monitor" range and 86 in "Refer" range. NDD rate was 60.0% (n = 126, 95% CI, 53.4 to 66.6%). There was no difference regarding CHD severity (p = 0.99). Only the presence of non-cardiac disease (OR = 2.14; 95% CI, 1.11 to 4.20) was associated with NDD. Forty-six children with NDD had no developmental follow-up (among them 21 were in "Refer" range (10%)) despite this being available.Conclusion: Children with significant CHD are at risk for NDD regardless of CHD severity. Systematic and early monitoring in a specific care program is required. Barriers that prevent access of care must be identified.Trial registration: Neurodevelopmental Disorders in Children With Congenital Heart Disease. NeuroDis-CHD. NCT03360370. https://clinicaltrials.gov/ct2/show/NCT03360370 What is Known: • Children with CHD are at risk for neurodevelopmental disorders and behavioural problems impacting their social adaptation, academic achievements and quality of personal and family life even in adulthood. What is New: • Children with CHD are at risk for neurodevelopmental disorders regardless of the complexity of the CHD. • Even with the availability of appropriate developmental services, children with CHD are not correctly followed, highlighting the need of a specific program of care for a better outcome. Local barriers that prevent access of care of those children must be identified.
本研究旨在评估患有严重先天性心脏病 (CHD) 的儿童出现神经发育障碍 (NDD) 的频率，并确定与 NDD 相关的因素，以及在发育治疗中进行随访的频率。在六个月的时间里，共纳入了 210 名年龄在 6 至 66 个月之间患有严重 CHD 的儿童。使用法语版的《年龄与阶段问卷第三版》（ASQ-3）评估神经发育领域。如果临界值分数≤-1SD，则定义为 NDD。-1SD 对应“监测”范围：儿童存在轻微或新兴障碍；-2SD 对应“转诊”范围：儿童存在神经发育迟缓。40 名儿童处于“监测”范围，86 名儿童处于“转诊”范围。NDD 发生率为 60.0%（n=126，95%CI，53.4 至 66.6%）。CHD 严重程度无差异（p=0.99）。只有非心脏疾病的存在（OR=2.14；95%CI，1.11 至 4.20）与 NDD 相关。尽管有发育随访，但 46 名患有 NDD 的儿童没有进行（其中 21 名处于“转诊”范围（10%））。
患有严重 CHD 的儿童无论 CHD 严重程度如何，都存在发生 NDD 的风险。需要在特定的护理计划中进行系统和早期监测。必须确定阻碍获得治疗的障碍。
先天性心脏病患儿的神经发育障碍。NeuroDis-CHD。NCT03360370。https://clinicaltrials.gov/ct2/show/NCT03360370
患有 CHD 的儿童无论 CHD 的复杂性如何，都存在神经发育障碍的风险。
即使有适当的发育服务，患有 CHD 的儿童也没有得到正确的随访，这突出了需要制定专门的护理计划，以获得更好的结果。
必须确定阻碍这些儿童获得护理的当地障碍。
