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Screening for neurodevelopmental disorders in children with congenital heart disease
Morgane Billotte1, Valérie Deken2, Sylvie Joriot3
1Department of Paediatric Cardiology, University Hospital of Lille, Lille, France.
Insights
Children with significant congenital heart disease (CHD) face a high risk of neurodevelopmental disorders (NDD), irrespective of CHD complexity. Early, systematic monitoring and identification of care access barriers are crucial for better outcomes in these children.
Area of Science:
- Pediatric Cardiology
- Developmental Pediatrics
- Neurodevelopmental Disorders
Background:
- Children with congenital heart disease (CHD) are recognized to be at increased risk for neurodevelopmental disorders (NDD) and behavioral issues.
- These challenges can impact social adaptation, academic success, and overall quality of life into adulthood.
Purpose of the Study:
- To determine the frequency of NDD in children with significant CHD.
- To identify factors associated with NDD in this population.
- To assess the follow-up rate in developmental therapies for children with CHD and NDD.
Main Methods:
- A cohort of 210 children (6-66 months) with significant CHD was evaluated over six months.
- The Ages & Stages Questionnaire Third Edition in French (ASQ-3) was used to screen for NDD.
- NDD was defined by scores at or below -1SD (Monitor) or -2SD (Refer) on the ASQ-3.
Main Results:
- A high rate of NDD was observed, with 60.0% of children (n=126) falling into the 'Monitor' or 'Refer' ranges.
- CHD severity did not correlate with the presence of NDD (p=0.99).
- The presence of non-cardiac comorbidities significantly increased the risk of NDD (OR=2.14).
- Despite availability, 46 children with NDD lacked developmental follow-up, including 21 in the 'Refer' range.
Conclusions:
- Significant CHD poses a substantial risk for NDD in children, independent of heart defect complexity.
- There is a critical need for systematic, early monitoring programs tailored for children with CHD.
- Barriers preventing access to essential developmental care for these children must be identified and addressed to improve outcomes.
Abstract:
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.
