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Universal Newborn Screening: Knowledge, Attitudes, and Satisfaction Among Public Health Professionals

Laurie Dunn, MD, Katherine Gordon, BS, Julia Sein, BS, Kimberly Ross, BS
Volume: 105 Issue: 4 April, 2012

Abstract:

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.

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References:

1. American Academy of Pediatrics, Newborn Screening Task Force. Serving the family from birth to the medical home: newborn screening: a blueprint for the future. Pediatrics 2000; 106: 389–427.
 
2. Therrell BL, Johnson A, Williams D. Status of newborn screening programs in the United States. Pediatrics 2006; 117: S212–S252.
 
3. Watson MS, Mann MY, Loyd-Puryear MA, et al. Newborn screening: toward a uniform screening panel and system—executive summary. Pediatrics 2006; 117: S296–S307.
 
4. Kim S, Loyd-Puryear MA, Tonniges TF. Examination of the communication practices between state newborn screening programs and the medical home. Pediatrics 2003; 111: e120–e126.
 
5. Desposito F, Loyd-Puryear MA, Tonniges TF, et al. Survey of pediatrician practices in retrieving statewide authorized newborn screening results. Pediatrics 2001; 108: e22.
 
6. Kemper AR, Uren RL, Moseley KL, et al. Primary care physicians; attitudes regarding follow-up care for children with positive newborn screening results. Pediatrics 2006; 118: 1836–1841.
 
7. Loyd-Puryear MA, Tonniges T, van Dyck PC, et al. American Academy of Pediatrics newborn screening task force recommendations: how far have we come? Pediatrics 2006; 117: S194–S211.
 
8. Davis TC, Humiston SG, Arnold CL, et al. Recommendations for effective newborn screening communication: results of focus groups with parents, providers, and experts. Pediatrics 2006; 117: S326–S340.
 
9. Accreditation Council for Graduate Medical Education program requirements for graduate medical education in pediatrics. http://www.acgme.org/acWebsite/downloads/RRC_progReq/320_pediatrics_07012007.pdf. Published July 1, 2007. Accessed October 30, 2011.

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