As newborn "heel stick" screening expands—some states now test for 30 or more metabolic disorders—false-
positive results have increased to roughly eight for every true case identified. A study in the June Pediatrics finds that these results can cause family stress, even after retesting finds the baby healthy.
Researchers led by psychologist Susan Waisbren, PhD,
and Elizabeth Gurian, MS, in Children's Hospital Boston's
Division of Genetics, interviewed 173 families who had received false-positive results and 67 families with normal newborn screening results. Although at least six months had passed since the original diagnoses were ruled out, mothers in the false-positive group reported more worry about their child's future, and 15 percent (versus 3 percent in the comparison group) said their child needed extra parental care. Both parents scored higher on a standardized Parenting Stress Index, and 11 percent of mothers scored in the clinical range.
Parent-child relationships also suffered with parents in the false-positive group agreeing more closely with statements like, "I expected to have closer and warmer feelings for my child, and this bothers me," and "My child makes more demands on me than most children."
Stress was greatest when families lacked a full understanding of the screening process. Two-thirds of parents didn't correctly understand the reason for repeat testing, a quarter voiced concerns about the length of time (sometimes up to a month) before the diagnosis was ruled out, and half didn't recall being told that the repeat test was normal. Instead, parents were commonly told that "no news is good news," or to contact their pediatrician for the results. Overall, 61 percent felt a need for more information.
Dr. Waisbren and Gurian urge pediatricians to coordinate with obstetricians, newborn screening programs and metabolic centers to keep parents informed before, during and after
testing. When retesting is needed, pediatricians should tell parents in person and provide informational materials, such as the brochure "Follow-up to Newborn Screening: A Guide for Parents," available at: www.childrenshospital.org/
newenglandconsortium/nbs_brochure.pdf.
To help pediatricians anticipate and answer parents'
questions, Waisbren is developing a Q&A sheet. For a copy, contact her at susan.waisbren@childrens.harvard.edu.
