178 - A Multi-State Population-Based Study of Parental Stress After a False Positive Newborn Screening Result

Publication Number: 2172.178

Beth A. Tarini, Co-Director, Silver Spring, MD, United States; Kelly Christensen, Children's National Hospital, Gaithersburg, MD, United States; Mary Lowe, Virginia Department of Health, Richmond, VA, United States; Christen Crews, Virginia Department of Health, Midlothian, VA, United States; Anne Atkins, Children’s National Hospital, Madison, WI, United States; Lindsay Cooper, Johns Hopkins University School of Medicine, Phoenix, MD, United States; Brianne Zielinski, BrownWinick Law Firm, Waukee, IA, United States; Knute Carter, University of Iowa College of Public Health, Iowa City, IA, United States; Thevaa Chandereng, Children's National Health System, Washington, DC, United States

Background: False-positive (FP) newborn screening (NBS) results have long been thought to increase parental anxiety and stress, but most prior studies are qualitative, cross-sectional, and based on qualitative or single-site small samples. To provide more robust data, we conducted a multi-state, population-based, longitudinal study examining parental stress after FP NBS results.

Objective: To compare parental stress between parents of children with FP versus normal (NL) NBS results and to assess the potential role of defensive responding in interpreting stress scores.

Design/Methods: In collaboration with the Iowa and Virginia NBS programs, we prospectively surveyed parents of children with FP or NL NBS results between 2020 and 2023 using population-based sampling. Surveys were administered via REDCap (online or phone; English or Spanish) at enrollment and when children were 6, 12, 18, and 24 months. Parents completed demographics, medical and mental health history, and the Parenting Stress Index–Fourth Edition (PSI-4) long form. Continuous PSI-4 scores were compared using t-tests, and categorical variables using chi-square or Fisher’s exact tests. False discovery rate was controlled with q-value correction.

Results: A total of 1,083 parents (588 FP, 495 NL) were recruited based on 718 infants, and 874 (81%) completed the 6-month survey. Two-thirds of respondents were female, 78% were White and 36% reported that the index child was their only child. Mean total stress scores were similar between FP (197 ± 41) and NL (199 ± 40) parents (t = –0.73, p = 0.47). No differences were found across PSI-4 subscales. However, a higher proportion of FP parents exhibited defensive responding (42% vs. 13%, p < 0.001). Among all participants, parents with a history of diagnosed anxiety disorders were more common in the defensive responding group (52% vs. 48%), suggesting that prior anxiety may influence self-report bias. Only 25% of total PSI-4 responses were flagged for defensive responding, indicating potential underestimation of stress.

Conclusion(s): While FP NBS results were not associated with higher mean parental stress, defensive responding may obscure true differences between groups. Recognizing and adjusting for defensive responding is essential for accurately measuring parental stress in NBS research. Ongoing analyses will examine whether defensive responding mediates the relationship between parental stress and prior anxiety diagnoses.