Parental response to repeat testing of infants with 'false-positive' results in a newborn screening program

Abstract

Forty-five percent of the parents of 60 infants being retested in a newborn screening program for metabolic disorders understood that their infant was undergoing retesting because the first test result was abnormal. Fifty-five percent had incorrect or incomplete information, believing that retesting was routine, or that mistakes had been made in the original testing procedure, or they report being told nothing specific about the testing. Parents who were aware that the initial test was abnormal were no more anxious or depressed while waiting for the repeat test results than other parents. At a second interview after learning the normal results of the repeat test, both those parents informed of the initial abnormal result as well as those not informed were less anxious and depressed. However, 36% of the parents of these normal infants reported concern about the health of their infant because of the repeat testing. This concern was not related to a parent's knowledge that the initial test result was abnormal, but was greater in parents reporting that they had not received sufficient information about the screening/testing process and its significance for the health of their infant.