Open Interbank

Abstract

PURPOSE To determine whether mothers of newborns understand basic facts about newborn screening (NBS), and how they feel about state retention of dried bloodspots (DBS) for research use. DESIGN This study was a cross-sectional survey administered to 548 mothers of newborns in postpartum units in five different hospitals in north Texas after Institutional Review Board approval. Each participating site delivered and collected surveys using systems that were convenient for them. The survey instrument used in this study is the Maternal Attitudes and Knowledge about Newborn Screening Survey. The survey was developed by the investigators. Summary statistics were provided for each participating site and surveys were combined for final data analysis. Multiple regression analysis was used to quantify associations between responses and demographic variables. RESULTS Overall, knowledge about details of NBS and DBS retention was inadequate. The most frequent source of information about NBS was the postpartum nurse. Mothers tended to believe that using newborn bloodspots for research was a good thing, but Medicaid recipients and minorities were more reluctant than others to share dried bloodspots for research. CLINICAL IMPLICATIONS Mothers are not fully informed about NBS or the use of infant bloodspots for research. Bloodspot storage in Texas could shrink under new opt-in policies, constraining a resource needed for genetic and other research. Further research to design and test educational interventions that are sensitive to the concerns of parents about DBS storage and that can be efficiently implemented antenatally is needed.