Screening for neurodevelopmental disorders in children with congenital heart disease

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ORIGINAL ARTICLE

Screening for neurodevelopmental disorders in children with congenital heart disease Morgane Billotte 1 & Valérie Deken 2 & Sylvie Joriot 3 & Guy Vaksmann 4 & Adélaïde Richard 4 & Ivan Bouzguenda 4 & François Godart 1 & Jean-Benoit Baudelet 1 & Thameur Rakza 1 & Sylvie Nguyen The Tich 3 & Marie-Paule Guillaume 1,4 Received: 1 April 2020 / Revised: 4 October 2020 / Accepted: 16 October 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020

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.

Keywords Congenital heart disease . Neurodevelopmental disorders . Ages & Stages Questionnaire Third Edition . Follow-up . Children . Outcome Abbreviations ASQ-3 Ages and Stages Questionnaire Third Edition in French 95% CI 95% confidence interval CHD Congenital heart disease CPB Cardiopulmonary bypass IQR Interquartile range Communicated by Peter de Winter * Marie-Paule Guillaume [email protected] Extended author information available on the last page of the article

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