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UAlbany Study Finds Long-Term Follow-Up Care Lacking in State Newborn Screening Programs
ALBANY, N.Y. (October 16, 2007) -- State newborn screening programs need to improve their capacity to act in the appropriate public health role for newborn screening follow-up, according to a new article by University at Albany associate professor Timothy Hoff in the October 2007 issue of Archives of Pediatric and Adolescent Medicine. Hoff's research examines the data-related readiness of screening programs to conduct long-term follow-up for newborns that state testing programs first screen for the presence of genetic or metabolic disorders. Long-term follow-up involves ensuring that newborns diagnosed with disorders such as cystic fibrosis and hypothyroidism receive appropriate care from the health delivery system throughout their adolescent development.
The results question the appropriateness of placing primary responsibility for long-term follow-up with state newborn screening programs. Over half of the state programs surveyed reported collecting no long-term follow-up data of any kind, meaning that they cannot track diagnosed children in-house to assess whether or not they receive adequate health services for their disorders over time. For programs that reported collecting long-term follow-up data on diagnosed individuals, almost half collected data only once per year, and most collected data through a paper form or verbal communication. Most programs also stored long-term follow-up data in paper files, as opposed to maintaining an electronic database of information.
"A high degree of variation was seen across state programs in terms of the types of data they collected, even for the same disorder, and how these data were used," said Hoff, who is on the faculty of the Health Policy and Management at UAlbany's School of Public Health. "Smaller states, states devoting more staff to follow-up activities, and states that outsourced their long-term follow-up responsibilities were more likely to report using collected data in ways consistent with core public health functions of surveillance and quality assurance."
Hoff's research included a national sample of 34 state newborn screening programs that completed a survey on their data collection and use practices. The survey was conducted in winter 2006. View the complete article.
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