Feasibility and Efficiency of Screening for Neurodevelopmental Disorders by an Advanced Practice Nurse in Children With Congenital Heart Disease

Congenital heart disease (CHD) is the leading cause of birth defects. Over 90% of children born with CHD reach adulthood. 50% of them will develop a neurodevelopmental disorder (NDD) that could affect life and long-term prognosis, including scholar and social integration and health related quality of life.

In France, there is a lack of medical resources to screen NDD in this population and to refer patients for appropriate and early treatment.

Investigators plan to propose a systematic early screening of NDD by an Advanced Practice Nurse (APN) during the usual cardiac follow-up. Children with CHD aged 1 to 5 will be included. If NDD is suspected, the patient will be referred to a neuropsychologist for NDD diagnosis confirmation and management planning. Patients with higher NDD risks (neonatal cardiac surgery) will benefit from a systematic neuropsychologist evaluation.

This study will investigate the feasibility and performance of an APN screening in this NDD-high risk population.

• Feasibility of the IPA screening for NDD [Срок оценки: 18 months]
• Performance (sensibility) of the IPA screening for NDD on the NDD high risk population [Срок оценки: 4 months (to obtain the neurophysiologist assessment)]
• Performance (specificity) of the IPA screening for NDD on the NDD high risk population [Срок оценки: 4 months (to obtain the neurophysiologist assessment)]
• Performance (positive predictive value) of the IPA screening for NDD on the NDD high risk population [Срок оценки: 4 months (to obtain the neurophysiologist assessment)]
• Performance (negative predictive value) of the IPA screening for NDD on the NDD high risk population [Срок оценки: 4 months (to obtain the neurophysiologist assessment)]
• Prevalence of NDD in the high risk population [Срок оценки: 18 months]