Feasibility and efficiency of Screening for Neurodevelopmental Disorders by an Advanced Practice Nurse in Children aged 1 to 5 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.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
DIAGNOSTIC
Masking
NONE
Enrollment
270
Screening for neurodevelopmental disorders by an advanced practice nurse with Ages \& Stages Questionnaires (ASQ-3) and Haute Autorité de Santé (HAS) identification scale
University Hospitial of Montpellier
Montpellier, France
RECRUITINGInstitut Marin Saint-Pierre
Palavas-les-Flots, France
NOT_YET_RECRUITINGCHU Bordeaux Haut-Lévêque
Pessac, France
NOT_YET_RECRUITINGSensibility of the IPA screening for neurodevelopmental disorder (NDD) on the whole population studied
This will be evaluated by comparing the results of the IPA screening (using both HAS scale and ASQ-3 parent's questionnaire) with results of the advanced neuropsychologist assessment. A positive IPA screening is defined by a NDD alert using the HAS scale and/or the ASQ-3 parent's questionnaire. The advanced neuropsychologist assessment will be done only for patients with CHD with a positive IPA screening.
Time frame: 4 months (to obtain the neurophysiologist assessment)
Feasibility of the IPA screening for NDD
This rate will be calculated by dividing the complete IPA screenings (including HAS and the ASQ-3 parent's questionnaire) and children coming to the Complex Congenital Heart Defects consultation during the study period.
Time frame: 18 months
Performance (sensibility) of the IPA screening for NDD on the NDD high risk population
This will be evaluated by comparing the results of the IPA screening (using both HAS scale and ASQ-3 parent's questionnaire) with results of the advanced neuropsychologist assessment. A positive IPA screening is defined by a NDD alert using the HAS scale and/or the ASQ-3 parent's questionnaire. The advanced neuropsychologist assessment will be done only for patients with CHD with a positive IPA screening.
Time frame: 4 months (to obtain the neurophysiologist assessment)
Performance (specificity) of the IPA screening for NDD on the NDD high risk population
This will be evaluated by comparing the results of the IPA screening (using both HAS scale and ASQ-3 parent's questionnaire) with results of the advanced neuropsychologist assessment. A positive IPA screening is defined by a NDD alert using the HAS scale and/or the ASQ-3 parent's questionnaire. The advanced neuropsychologist assessment will be done only for patients with CHD with a positive IPA screening.
Time frame: 4 months (to obtain the neurophysiologist assessment)
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Performance (positive predictive value) of the IPA screening for NDD on the NDD high risk population
This will be evaluated by comparing the results of the IPA screening (using both HAS scale and ASQ-3 parent's questionnaire) with results of the advanced neuropsychologist assessment. A positive IPA screening is defined by a NDD alert using the HAS scale and/or the ASQ-3 parent's questionnaire. The advanced neuropsychologist assessment will be done only for patients with CHD with a positive IPA screening.
Time frame: 4 months (to obtain the neurophysiologist assessment)
Performance (negative predictive value) of the IPA screening for NDD on the NDD high risk population
This will be evaluated by comparing the results of the IPA screening (using both HAS scale and ASQ-3 parent's questionnaire) with results of the advanced neuropsychologist assessment. A positive IPA screening is defined by a NDD alert using the HAS scale and/or the ASQ-3 parent's questionnaire. The advanced neuropsychologist assessment will be done only for patients with CHD with a positive IPA screening.
Time frame: 4 months (to obtain the neurophysiologist assessment)
Prevalence of NDD in the high risk population
Time frame: 18 months