Survey of Pediatrician Practices in Retrieving Statewide Authorized Newborn Screening Results

Abstract

ABSTRACT. 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 d...

Examination of the Communication Practices Between State Newborn Screening Programs and the Medical Home

“…However, a seamless system is not always the case, as illustrated in a study by Desposito et al 5 This study indicated that 31% of pediatricians were notified of screen-positive results Ͼ10 days after testing was completed. Although the majority of these patients received treatment and follow-up by the birth hospital or the state newborn screening follow-up team in a timely manner, communication with the primary care physician was less efficient than recommended guidelines.…”

Triagem neonatal: o que os pediatras deveriam saber

“…Neonatal screening is a system of five stages that is habitually organized and carried out by the public health system, which has the resources and authority necessary to carry out universal screening, and in which pediatricians play an important role. 2,13,14,17,[19][20][21] The first step is to carry out the screening tests themselves. The objective is to achieve universal screening, i.e., all newborn infants should be screened.…”

“…The policy that no news is good news must not be adopted. 20 Performing screening arouses expectations in families and they have the right to know the results as quickly as possible.…”

“…In this stage true positive results are differentiated from false positives. 20 Pediatricians will need to be guided by specialist disease centers and, very often, will refer their patients for treatment over the long term.…”

Enhancing Communication in the 21st Century

“…Kim et al 8 found that state newborn screening programs do not always include pediatricians in the newborn screening communication process. Desposito et al 9 found that 31% of pediatricians were notified of screen-positive results Ͼ10 days after testing was completed. Public health agencies, which are facing the challenges of addressing an increasing number of threats to children's health (such as obesity and violence), need to work collaboratively with families and clinicians to gather and to share information for monitoring and health-promoting activities.…”