Parent Reports of Developmental Service Utilization After Newborn Screening
Newborn screening (NBS) presents an opportunity to identify a subset of babies at birth who are at risk for developmental delays and could benefit from a range of developmental services. Potential developmental services in the United States include Part C Early Intervention (EI), private therapies,...
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| Format: | Article |
| Language: | English |
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MDPI AG
2024-12-01
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| Series: | International Journal of Neonatal Screening |
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| Online Access: | https://www.mdpi.com/2409-515X/11/1/3 |
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| author | Elizabeth Reynolds Sarah Nelson Potter Samantha Scott Donald B. Bailey |
| author_facet | Elizabeth Reynolds Sarah Nelson Potter Samantha Scott Donald B. Bailey |
| author_sort | Elizabeth Reynolds |
| collection | DOAJ |
| description | Newborn screening (NBS) presents an opportunity to identify a subset of babies at birth who are at risk for developmental delays and could benefit from a range of developmental services. Potential developmental services in the United States include Part C Early Intervention (EI), private therapies, and school-based services. Using parent-reported outcomes, this study examined the rates at which a sample of children diagnosed with NBS conditions used each developmental service. An online survey of 153 parents representing children with 27 different NBS conditions found that nearly 75% of children (<i>n</i> = 112) used at least one developmental service, with private therapies being the most frequent. Children were referred to EI relatively early and were often eligible because their medical diagnosis automatically qualified them. When examining condition-specific results for children with severe combined immunodeficiencies, congenital hypothyroidism, and Pompe disease, we found variability in rates of use, with high rates overall. Our findings suggest that many children diagnosed with an NBS condition continue to have developmental delays even after they receive appropriate medical care. Future research with more systematic follow-up is needed to understand whether the NBS program facilitates entry into these services and whether more streamlined processes could benefit children and families. |
| format | Article |
| id | doaj-art-ed6db0286af7442e9738f42268e77bb8 |
| institution | DOAJ |
| issn | 2409-515X |
| language | English |
| publishDate | 2024-12-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | International Journal of Neonatal Screening |
| spelling | doaj-art-ed6db0286af7442e9738f42268e77bb82025-08-20T02:42:34ZengMDPI AGInternational Journal of Neonatal Screening2409-515X2024-12-01111310.3390/ijns11010003Parent Reports of Developmental Service Utilization After Newborn ScreeningElizabeth Reynolds0Sarah Nelson Potter1Samantha Scott2Donald B. Bailey3RTI International, 3040 E. Cornwallis Road, Research Triangle Park, P.O. Box 12194, Research Triangle Park, NC 27709, USARTI International, 3040 E. Cornwallis Road, Research Triangle Park, P.O. Box 12194, Research Triangle Park, NC 27709, USARTI International, 3040 E. Cornwallis Road, Research Triangle Park, P.O. Box 12194, Research Triangle Park, NC 27709, USARTI International, 3040 E. Cornwallis Road, Research Triangle Park, P.O. Box 12194, Research Triangle Park, NC 27709, USANewborn screening (NBS) presents an opportunity to identify a subset of babies at birth who are at risk for developmental delays and could benefit from a range of developmental services. Potential developmental services in the United States include Part C Early Intervention (EI), private therapies, and school-based services. Using parent-reported outcomes, this study examined the rates at which a sample of children diagnosed with NBS conditions used each developmental service. An online survey of 153 parents representing children with 27 different NBS conditions found that nearly 75% of children (<i>n</i> = 112) used at least one developmental service, with private therapies being the most frequent. Children were referred to EI relatively early and were often eligible because their medical diagnosis automatically qualified them. When examining condition-specific results for children with severe combined immunodeficiencies, congenital hypothyroidism, and Pompe disease, we found variability in rates of use, with high rates overall. Our findings suggest that many children diagnosed with an NBS condition continue to have developmental delays even after they receive appropriate medical care. Future research with more systematic follow-up is needed to understand whether the NBS program facilitates entry into these services and whether more streamlined processes could benefit children and families.https://www.mdpi.com/2409-515X/11/1/3newborn screeningearly interventiondevelopmental servicesdevelopmental delayssevere combined immunodeficienciescongenital hypothyroidism |
| spellingShingle | Elizabeth Reynolds Sarah Nelson Potter Samantha Scott Donald B. Bailey Parent Reports of Developmental Service Utilization After Newborn Screening International Journal of Neonatal Screening newborn screening early intervention developmental services developmental delays severe combined immunodeficiencies congenital hypothyroidism |
| title | Parent Reports of Developmental Service Utilization After Newborn Screening |
| title_full | Parent Reports of Developmental Service Utilization After Newborn Screening |
| title_fullStr | Parent Reports of Developmental Service Utilization After Newborn Screening |
| title_full_unstemmed | Parent Reports of Developmental Service Utilization After Newborn Screening |
| title_short | Parent Reports of Developmental Service Utilization After Newborn Screening |
| title_sort | parent reports of developmental service utilization after newborn screening |
| topic | newborn screening early intervention developmental services developmental delays severe combined immunodeficiencies congenital hypothyroidism |
| url | https://www.mdpi.com/2409-515X/11/1/3 |
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