[Monitoring network for vulnerable children in the Pays de la Loire ("Grandir ensemble" - Cohort LIFT): 10 years of activity 2003-2013]

Introduction: Vulnerable children are at-risk newborns including premature infants and some children with pathologies presented by fear anomalies and deficiencies, most particularly neurological. Monitoring is based on the detection of these abnormalities and their early management. The organization of this monitoring system is based on a network of doctors, mostly pediatricians, trained regularly. The objective of this review was to assess the resources, means, and results of 10 years of follow-up.

Methods: The Pays de la Loire network includes 24 maternity wards and 13 neonatal departments. Annual admissions are around 5000 newborns to approximately 45,000 annual births. Upon discharge of newborns, born prematurely at 34 weeks of gestation (WG) or less, or term infants with neurological problems, parents are asked to have their child monitored by a referring doctor. During the consultation, a reference document is filled out by the doctor and sent to the project manager for data collection and specific compensation for private practitioners. Standardized questionnaires were used such as the ASQ (Ages and Stage Questionnaire) completed by parents, the developmental quotient (DQ) with the Lézine Brunet-Revised test (BLR), the intelligence quotient (IQ) with the Wechsler Preschool and Primary Scale of Intelligence (WIPPSI III) completed by psychologists employed in the network, and a questionnaire completed by the teacher at 5 years of age.

Results: The network started on 1st March 2003, and 28th February 2013, after 10 years of inclusion, 10,800 children had been included. This population accounts for 2.4% of all annual births: 1.1% were included for prematurity less than 33 weeks and 0.25% were term-born infants. The characteristics of children are presented with gestational age, birth weight, and obstetric and neonatal pathologies. The percentage of these children followed was 80% at 2 years and 63% at 5 years. At 2 years, the results are presented according to gestational age with approximately 60% of children without disabilities at 25-26 WG, 73% at 27-28 WG, 77% at 29-30 WG, and 86% at 31-32 WG. Absorptions are diverse and vary according to the age of the child with physical therapy, psychomotor skill work, speech therapy, hearing and vision consultations, and psychology/psychiatry. Assessment tools were refined by specific analyses: the ASQ 24 months (completed by parents) was deemed valid and predictive with respect to IQ (abandoned in 2012), and the grid completed by the teacher was found to predict abnormalities in 5 years.

Conclusion: The Pays de la Loire monitoring network has met its initial objective, namely to detect disabilities early and provide practical help to parents in a population of vulnerable children. Benefits for professionals and other children not followed in the network were observed, with an increase in pediatricians' skills. The benefits of the evaluation results are more difficult to assess with the care than neonatal care in obstetrics. The sustainability of such a network seems assured for healthcare professionals, provided that funding is maintained by the health authorities.