Survey reveals knowledge gap in newborn screening for CF, other abnormalities
A survey from the Ann & Robert H. Lurie Children’s Hospital of Chicago found that more awareness about newborn screening and cystic fibrosis (CF) in particular is needed.
Nearly 1,600 parents participated in the survey; 79% indicated familiarity with CF before participating, but 52% did not know that it was included in newborn screening tests. Only half (51%) of parents said they knew which conditions were included in newborn screening tests.
Among parents whose child had a positive newborn screening test, most (75%) struggled to understand the results, and 34% did not feel supported by their healthcare teams.
“Although all U.S. states screen for at least 33 metabolic and genetic disorders using blood spots collected in the first days of life, we found that parents don’t know enough about newborn screening and need more support from clinicians if their infant has an abnormal test result,” said Marie Heffernan, PhD, survey science lead at Mary Ann & J. Milburn Smith Child Health Outcomes, Research and Evaluation Center, Stanley Manne Children’s Research Institute at Lurie Children’s, and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine, in a press release.
Dr. Heffernan indicated that it is important for parents to understand the newborn screening results and follow up immediately on any abnormal outcomes, as later follow-up for CF is associated with worse nutrition and impacts long-term health outcomes.
Enhanced awareness among healthcare providers and the public on newborn health screenings is important.
Reference
Survey of U.S. parents highlights need for more awareness about newborn screening, cystic fibrosis and what to do if results are abnormal. Ann & Robert H. Lurie Children’s Hospital of Chicago press release. May 5, 2024. Accessed May 15, 2024. https://www.luriechildrens.org/en/news-stories/survey-of-u.s.-parents-highlights-need-for-more-awareness-about-newborn-screening-cystic-fibrosis-and-what-to-do-if-results-are-abnormal
