Parent Reports of Developmental Service Utilization After Newborn Screening

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.