Newborn screening tests translate to stress for parents

Because states now test for 30 or more metabolic disorders at or soon after birth, false-positive results are on the rise in newborns. This can cause considerable parental stress-even when a baby's results prove negative on retesting. Now, researchers from Children's Hospital Boston report that the stress could be alleviated by better educating parents and pediatricians. The findings appear in the June 2006 issue of Pediatrics.

Psychologist Susan Waisbren, PhD, and Elizabeth Gurian, MS, working in Children's division of genetics, interviewed 173 mothers in families that had received a false-positive screening result and a comparison group of 67 families who had a normal newborn screening result. Mothers in the false-positive group, although interviewed at least six months after a diagnosis had been ruled out in their child, both reported a greater degree of worry about their child's future and rated themselves less healthy than mothers in the comparison group. Fifteen percent said their child needed extra-parental care-compared to 3% of mothers in the comparison group.

Dr. Waisbren and Gurian also found that false-positive tests affected the parent-child relationship: Parents in the false-positive group scored more highly on two subscales of the Parental Stress Index (PSI): a Parent-Child Dysfunctional Interaction scale and a Difficult Child scale.

Dr. Waisbren believes that a positive test can increase expectations of illness-even when it is later found to be in error.

"We're not sure why-maybe it feeds into a general nervousness as new parents," she speculates. "But our results also show that parental stress was greater when families didn't have adequate information and understanding."

Researchers found that two thirds of parents with a false-positive result did not understand why their child was called back for a repeat test. Mothers who knew the correct reason had a lower level of stress (this was not true for fathers, however).

Other findings of the study include:

• Some parents had to wait as long as a month to get the result of a second test; 26% voiced concerns about how much time passed before the diagnosis was ruled out. Half of parents in the false-positive group said they hadn't been told, or didn't remember being told, that the diagnosis had been ruled out. Of these, 22% said they were told they wouldn't be notified unless a problem was found, and 24% were required to ask their pediatrician for results.
• 61% of parents felt a need for more information about newborn screening generally and their child's results.

The researchers propose that improved and better-timed education about the role and meaning of these tests may reduce parental stress related to newborn screening.

The study was funded by the Maternal and Child Health Bureau of the US Health Resources and Services Administration and the Ethical, Legal and Social Implications (ELSI) division of the Human Genome Project, National Institutes of Health.