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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
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Parent Reports of Developmental Service Utilization After Newborn Screening.

Elizabeth Reynolds1, Sarah Nelson Potter1, Samantha Scott1

  • 1RTI International, 3040 E. Cornwallis Road, Research Triangle Park, P.O. Box 12194, Research Triangle Park, NC 27709, USA.

International Journal of Neonatal Screening
|January 23, 2025
PubMed
Summary

Nearly 75% of infants with newborn screening (NBS) conditions accessed developmental services, primarily private therapies. Many children with NBS conditions still experience developmental delays despite medical care, highlighting the need for improved service access.

Keywords:
Pompe diseasecongenital hypothyroidismdevelopmental delaysdevelopmental servicesearly interventionnewborn screeningsevere combined immunodeficiencies

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Area of Science:

  • Pediatrics
  • Genetics
  • Developmental Biology

Background:

  • Newborn screening (NBS) identifies infants at risk for developmental delays.
  • Developmental services include Part C Early Intervention (EI), private therapies, and school-based services in the U.S.

Purpose of the Study:

  • To examine the utilization rates of various developmental services among children diagnosed with NBS conditions.
  • To understand the patterns of service use based on parent-reported outcomes.

Main Methods:

  • An online survey was administered to 153 parents of children with 27 different NBS conditions.
  • Data collected focused on the types and frequency of developmental services accessed by their children.

Main Results:

  • Approximately 75% of surveyed children utilized at least one developmental service.
  • Private therapies were the most commonly accessed service.
  • Children with specific conditions like severe combined immunodeficiencies, congenital hypothyroidism, and Pompe disease showed variable but generally high service utilization rates.

Conclusions:

  • Many children diagnosed via NBS continue to experience developmental delays despite medical interventions.
  • Further research is needed to assess NBS program's role in facilitating service entry and to optimize service delivery processes.