Neurodevelopmental Disorders in Children With Congenital Heart Disease
Condition: Congenital Heart Disease
MeSH terms: Heart Diseases; Heart Defects, Congenital; Neurodevelopmental Disorders
Study type: Observational

Summary: 
      Children with congenital heart disease are at risk for neurodevelopmental disorders, these
      disorders impacting their quality of life and their integration into society.

      The aim of this study is to detect neurodevelopmental disorders in children (aged from 6 to
      66 months) with congenital heart disease in Nord-Pas-De-Calais (France) and to evaluate the
      frequency and risk factors of these neurodevelopmental disorders for a better follow-up.

      This study will help implementing a specific program for the evaluation and management of
      neurodevelopmental disorders in children suffering from congenital heart disease in
      Nord-Pas-De-Calais and more globally, in the region Hauts-De-France.
    

Detailed description: 
      Are selected children with "significant" congenital heart disease (aged from 6 to 66 months)
      in "Nord-Pas-De-Calais" fulfilling inclusion criteria. A reliable and valid questionnaire
      used to screen developmental delays of children aged from one month to 66 months is completed
      by volunteer parents at the time of the study. Data of the questionnaire is collected and a
      scoring by professional is provided ; children at risk for neurodevelopmental delays are
      depicted.

      In parallel, medical and surgical history is also collected to detect risk factors for
      neurodevelopmental disorders.

      The frequency of neurodevelopmental disorders in this screened population according to risk
      factors (among neonatal data, severity of congenital heart disease, surgery, length of stay
      at hospital,... ) will be evaluated. The ratio children with neurodevelopmental disorders for
      whom specific care was implemented/ children with neurodevelopmental disorders who did not
      have specific care despite neurodevelopmental disorders will be established.

      Follow-up action will be taken for children at risk for developping neurological disorders
      highlighted by the screening.

      This study will help implementing a specific program for evaluation and management of
      neurodevelopmental disorders for children with congenital heart disease in our region.
    

Intervention name(s): Ages & Stages Questionnaires, Third Edition in French (ASQ-3™)
Intervention type(s): Other
Intervention description(s): This questionnaire screens 5 neurodevelopmental areas (communication, gross motor, fine motor, problem solving and personal-social); 30 items per questionnaire about the child's abilities are evaluated.
It takes about 15-20 minutes. Data are collecting and a scoring by a professional is provided. Follow-up action is taken for children at risk. Medical and surgical history is also collected to detect risk factors for neurodevelopmental disorders among neonatal data, characteristics of congenital heart disease and first surgery, and other comorbidities.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Children With Congenital Heart Disease
      
Keywords: Neurodevelopmental disorders,; Congenital heart disease; Children