Parental Tolerance of False-positive Newborn Screening Results

Abstract

To measure parental tolerance for a false-positive newborn screening result by assessing perceived quality of life for screening results and health states associated with expanded newborn screening programs for metabolic disorders. Perceived quality of life was measured using time trade-off and willingness-to-pay questions for a false-positive newborn screening result and other conditions associated with metabolic disorders (ie, short-term hospitalization, dietary treatments, and developmental delay). Telephone or in-person interviews were conducted from October 1, 2004, through January 31, 2006, for 2 populations in Massachusetts and Pennsylvania. Parents of children who had a false-positive newborn screening result (n = 91) and parents of children with normal screening results (n = 50). Telephone interviews. Time trade-off and willingness-to-pay amounts. Median time trade-off and willingness-to-pay amounts for parents of children with false-positive screening results were both 0 compared with parents of children with normal screening results who had median values of 1 week (P = .07) and $100 (P < .001). For both populations, dietary treatments and developmental delay elicited higher time trade-off and willingness-to-pay amounts compared with ratings for experiencing a false-positive newborn screening result or short-term hospitalization because of an undiagnosed metabolic disorder. Parents have a high tolerance for false-positive newborn screening results. Preferences for test outcomes and other health states associated with screening for metabolic disorders should be included in cost-effectiveness and cost-benefit analyses of expanded newborn screening programs.