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Coordination and Referral Platforms for Children Aged 7 and Under with Suspected Neurodevelopmental Outcome: What

Marie Ansoborlo1,2, Valentin Gaudichon1, Margaux Hazard1,3,4

  • 1EXcellence Center for Autism and Neurodevelopmental disorders, EXAC-T, 37000, Tours, France.

Studies in Health Technology and Informatics
|August 23, 2024
PubMed

Insights

Coordination and referral platforms (CRPs) for neurodevelopmental disorders (NDDs) in children lack a unified electronic health record. A proposed EHR model can improve data reuse, care management, and research screening for NDDs.

Area of Science:

  • Pediatrics
  • Neurodevelopmental Disorders
  • Health Informatics

Background:

  • Coordination and referral platforms (CRPs) are crucial for early detection of neurodevelopmental disorders (NDDs) in children.
  • France has deployed 112 nationwide CRPs since 2018, but they lack a common electronic health record (EHR) system.
  • This hinders real-life data reuse, care pathway optimization, and research pre-screening.

Purpose of the Study:

  • To propose an EHR model for CRPs to enable real-life data reuse.
  • To optimize care pathway management for children with NDDs.
  • To facilitate pre-screening for research using harmonized CRP data.

Main Methods:

  • Collected data from 34 CRPs into an application.
  • Utilized a Natural Language Processing (NLP) tool to extract standardized NDD assessment scales.
  • Evaluated NLP tool performance (86.4% precision, 90.5% recall).
  • Supported 195 children (aged 4) between Sept 2022 and Aug 2023.

Main Results:

  • The NLP tool demonstrated high precision and recall for extracting NDD assessment data.
  • Language delays (75%) and global developmental delays (16%) were significant concerns in the studied children.
  • A harmonized and structured EHR can automate the description of children's NDD phenotypes and care pathways.

Conclusions:

  • A harmonized EHR for CRPs can improve data utilization and care management for children with NDDs.
  • Real-life, data-driven evidence is vital for NDDs, where early intervention impacts prognosis.
  • An enriched CRP database offers benefits for individual and public health, including pathway monitoring and research facilitation.

Keywords:
Early intervention and diagnosisHealth data structurationNeurodevelopmental disordersReal-life dataText-mining

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