Pregnant women’s perceived understanding and antenatal information needs regarding newborn screening for inherited metabolic diseases in southwestern China: a cross-sectional study

Abstract

Newborn screening (NBS) can reduce morbidity from some inherited metabolic diseases (IMDs) through early detection and timely treatment. Clear antenatal communication can support informed participation and timely follow-up by helping parents understand the purpose and pathway of screening. Evidence on pregnant women’s perceived understanding, attitudes, antenatal information engagement, and screening- and follow-up-related intentions regarding newborn IMD screening in China remains limited. This study described these four domains and examined their associations with sociodemographic and reproductive-history characteristics in southwestern China. This hospital-based cross-sectional survey used a purposive sample recruited at a tertiary women’s and children’s hospital (National Regional Medical Center in China) from January 2024 to December 2024. After data-quality review, 1,320 eligible records were analyzed. All 21 questionnaire items were retained and analyzed as four domains: perceived understanding, attitudes, antenatal information engagement, and screening/follow-up intentions. Internal consistency, post hoc exploratory factor analysis, Pearson correlations, and four fully adjusted linear models with HC3 robust standard errors were evaluated. Benjamini-Hochberg false-discovery-rate (FDR) correction was applied across 92 non-intercept coefficients. Parallel analysis supported four factors (Kaiser-Meyer-Olkin = 0.912; Bartlett χ 2 = 21,719.21, p < 0.001), explaining 67.5% of variance. Mean (SD) scores were 15.15 (4.54)/35 for perceived understanding, 25.43 (3.77)/30 for attitudes, 9.34 (2.31)/15 for antenatal information engagement, and 20.09 (3.16)/25 for intentions; Cronbach’s α values were 0.918, 0.950, 0.745, and 0.914. Fifteen coefficients had nominal p < 0.05, but none remained significant after FDR correction (all q ≥ 0.051); adjusted R 2 values were 0.010–0.039. Participants reported limited self-perceived understanding alongside favorable attitudes, moderate antenatal information engagement, and strong stated intentions. Adjusted R 2 values of 0.010–0.039 and the absence of FDR-significant predictors indicate that the measured sociodemographic and reproductive-history variables had negligible explanatory value and should not be used for subgroup prediction or targeting. The domain pattern supports universal, nursing-led antenatal communication focused on screening procedures, abnormal-result interpretation, recall, confirmation, and follow-up, while future work should refine the questionnaire and test whether education improves observed participation and follow-up.