Parent Recollections of Newborn Screening With an Emphasis on Cystic Fibrosis

All states in the United States perform newborn screening (NBS) for at least 38 metabolic and genetic disorders, including cystic fibrosis (CF). Little is known about parents' perceptions and experiences with NBS tests.

We conducted a survey of US parents in 2023 through the QualtricsXM panel. We used stratified sampling to demographically reflect the US population. Parents reported their understanding of NBS, recollections of the NBS process, understanding and recollections specifically for CF testing, and social-emotional experiences after a positive (abnormal) NBS result for their child.

There were 1596 parents who completed the survey. Just over half reported that they knew the conditions included in NBS tests (51%), that false-positive results were possible (58%), and that false-negative results were possible (54%). Most parents recalled their youngest child having an NBS test after birth (75%), and that a health care professional talked to them about the reason for doing an NBS test (60%). Most parents (79%) had heard of CF before taking the survey, but only 48% knew that CF could be detected with NBS. Among 447 parents who had a child with a positive NBS test, 75% reported difficulty understanding the NBS test results and 34% did not feel supported by their child's health care team.

Parents had limited knowledge of NBS and reported low levels of support from the child's health care team when screening tests were positive. Strategies to strengthen parent-clinician partnerships to improve understanding of NBS and to support parents whose infants have positive screening tests should be developed.