Completeness and complexity of information available to parents from newborn-screening programs

Background. In 2000, the American Academy of Pediatrics (AAP) Task Force on Newborn Screening published a blueprint for the future of newborn screening that included recommendations for information provided to parents about screening. Objectives. To evaluate the completeness of educational material provided by newborn-screening programs and to measure the reading level and complexity of the material. Methods. Telephone survey of newborn-screening programs ( n = 51) followed by content analysis of educational material. Results. All 51 programs responded ( response rate: 100%); 47 of these programs made educational material available. None of the material included all elements recommended in the blueprint. Benefits of screening (98%) and how parents would be notified of results (87%) were included more often than the risks of screening (19%), possibility of a false-positive result (13%), importance of (34%) and how to respond to (28%) a positive result, and the storage and use of residual samples (11%). The median readability grade level was 10. Grade-level complexity of the material was not associated with completeness according to the AAP criteria. Conclusions. Parent educational materials for new-born-screening programs do not meet the standard recommended by the AAP, and there are important variations between programs in the information provided to parents. Continuing research is needed to measure progress toward the goals outlined within the blueprint and to assess how these changes impact the care provided through newborn-screening programs.