PEDIATRICS Vol. 108 No. 2 August 2001, p. e22

ELECTRONIC ARTICLE:
Survey of Pediatrician Practices in Retrieving Statewide Authorized Newborn Screening Results

Received Jan 29, 2001; accepted Apr 9, 2001.

Franklin Desposito^*, Michele A. Lloyd-Puryear, Thomas F. Tonniges^§, Francisco Rhein^, , and Marie Mann

From the ^* Center for Human and Molecular Genetics, Department of Pediatrics, UMDNJ-New Jersey Medical School, Newark, New Jersey;  Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland; ^§ Department of Community Pediatrics, American Academy of Pediatrics, Elk Grove Village, Illinois; and  Department of Internal Medicine, Emory University, Atlanta, Georgia.

Objective.  Mandated state newborn screening programs for the approximately 4 million infants born each year in the United States involves the following 5 components: 1) initial screening, 2) immediate follow-up testing of the screen-positive newborn, 3) diagnosis confirmation (true positive versus false positive), 4) immediate and long-term care, and 5) evaluation of all of the components of the system, including process and outcomes measures. Smooth functioning of this system requires pretest education of the parents as well as education and involvement of all health care providers who interact with the newborn screening system. Although extensive literature is available concerning public health aspects, technical standards/protocols, and discussion of the interfaces among the 5 components of the system, little information is available regarding physician awareness, involvement, and interactions with the system. The objective of this study was to determine, through a survey, primary care pediatricians' satisfaction with their state's newborn screening program. This was reflected in survey questions that asked how pediatricians were notified of the results of newborn screening tests that were performed on infants in their practice.

Methods.  Two thousand questionnaires were sent to primary care pediatricians in all 50 states and the District of Columbia regarding their practices in retrieving statewide newborn screening results. Of the 2000 surveys, 574 (29%) responses from primary care pediatricians who care for at least 1 to 5 newborns each week form the basis of this report. Also reported are the commentaries of the physicians concerning their specific practices, overall assessment of the system, and ideas for improvement.

Results.  Physicians reported their general satisfaction with the newborn screening system's ability to retrieve screen-positive infants for follow-up testing. However, communication and partnership with the primary care pediatrician regarding accessibility and timely retrieval of newborn screening test results was deemed less than optimal. Thirty-one percent of respondents indicated that notification for screen-positive test results was greater than 10 days, whereas 26% indicated that they do not receive the results of screen-negative tests and need to develop office procedures (contact birth hospital or state laboratory) to obtain results. Twenty-eight percent indicated that they do not actively seek results of newborn screening for their patients and presume that "no news is good news." Barriers to retrieving test results included that infants were born at hospitals where the physician does not have privileges, there were new transfers to the practice, infants were born in other states, personnel time was needed to track results, and there was a lack of a cohesive communication/reporting system that includes the primary care physician as an integral partner in the newborn screening communication process. Ninety-two percent of physicians would welcome an enhanced state system with direct communication to the primary care pediatrician as well as the birth hospital.

Conclusion.  Pediatricians recognize and endorse the benefits of newborn screening and believe that they play an important role in the efficient functioning of the system. An enhanced physician partnership with the newborn screening program will enable the timely follow-up of the screen-positive newborn for confirmatory testing. All test results need to be communicated to the pediatrician in a timely and efficient manner: 7 days for screen-positive results and 10 to 14 days for all results. Newborn screening test results of new patients who enter the practice should be available at the time of the first well-infant visit, ideally by 2 weeks of age. The majority of primary care pediatricians acknowledge the need to establish office protocols for the retrieval of newborn screening test results and would welcome an enhanced direct communication system with the state newborn screening program.  Key words:  newborn screening, pediatrician survey.

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