Universal newborn screening: Knowledge, attitudes, and satisfaction among public health professionals

OBJECTIVE: Assess knowledge, attitude, and satisfaction with the newborn screening (NBS) system among pediatric public health leaders in the state of Florida. METHODS: Online surveys and open-ended telephone interviews were administered to 10 county medical directors for a state-funded program that oversees NBS. Survey questions examined basic knowledge regarding NBS, views on provider and parent access to NBS information, and recommendations for improving the information distribution system. RESULTS: Providers learn about NBS from the American Academy of Pediatrics, the Department of Health, and continuing medical education; however, 80% of providers were concerned about receiving inadequate information. Thirty percent of the providers surveyed reported that it takes >14 days to receive NBS results. The majority (80%) were concerned that parents may not receive adequate information about their infant's condition, treatment, or prognosis. No provider reported being confident in his or her ability to assess how well a parent understands a positive NBS result. Eighty percent of those surveyed believe that the pediatric primary care provider is responsible for providing NBS information to parents and almost all of the providers (90%) believed parents should be notified of normal NBS results. CONCLUSIONS: This study indicates dissatisfaction with and confusion about NBS. Addressing this problem requires action at the levels of medical education, clinical care, health policy, and information systems.