Newborn Screening Education: A Survey of Ontario Mothers

Abstract

Purpose and methods: Effective parental education about newborn screening (NBS) may help to maximize the benefits and minimize the harms of screening. We investigated experiences, knowledge and opinions regarding NBS education among Ontario mothers. Mothers whose infants recently received NBS were invited to complete a mailed survey (n=1712). Results: Of the 750 participants, 93% recalled their infant receiving NBS, while 69% recalled receiving information about NBS. Of this group, fewer than 50% reported receiving information prenatally, yet a majority of mothers (64%) viewed this as the most important time for education. Those who received information prenatally reported higher satisfaction (OR 2.4). The 40% of mothers who recalled being informed about the meaning of results had higher knowledge about NBS (OR 2.7) and reported higher satisfaction (OR 4.2). Conclusions: Parental education about NBS could place greater emphasis on the prenatal period and on fostering understanding about the meaning of results.