276 - Parents’ Awareness, Understanding, and Experiences with Newborn Screening with an Emphasis on Cystic Fibrosis

Poster Number: 276
Publication Number: 276.2220

Background: Currently, all states in the US screen for at least 33 metabolic and genetic disorders that are detected from blood spots universally collected in hospitals. However, little is known about parents’ awareness, understanding, and experiences with newborn screening.

Objective: The goals of this project were to a) assess US parents’ awareness and understanding of newborn screening, and b) understand parents’ experiences with the newborn screening process.

Design/Methods: Data were collected from July 14-August 1 2023 from US parents through the QualtricsXM panel. We used purposive sampling to reflect the US population. Parents were eligible if their youngest child was between 0-12 years old. Parents reported on their understanding of newborn screening, and their recollections of their youngest child’s newborn screening. Parents who had a child with a positive newborn screening test also reported on the social-emotional outcomes of the newborn screening process. Respondents self-reported race, ethnicity and other demographics. Data were analyzed using proportions and Rao-Scott chi-square tests.

Results: Responses were collected from 1,596 parents with an overall survey completion rate of 93.7% (1,596 completed surveys out of 1,703 parents who started the survey). Parent self-reported race and ethnicity (Table 1) reflected the composition of the general US population. Just over half of parents reported that they knew which conditions are included in newborn screening tests (51%), that false-positive results were possible on newborn screening tests (58%), and that false-negative results were possible on newborn screening tests (54%). Most parents recalled their youngest child having a newborn screening test after they were born (75%), and that a healthcare professional talked to them about the reason for doing a newborn screening test (60%). Differences in parent recollections of newborn screening emerged by parent race, ethnicity and education level (Table 2). Among 447 parents who had a child with a positive newborn screening test (6% who reported later diagnosis with CF, 8% who reported later diagnosis with a different newborn screening disorder), most parents reported difficulty understanding the newborn screening test results (75%, Figure 1) and 34% of parents did not feel supported by their child’s healthcare team.

Conclusion(s): This represents a need for clinicians to strengthen partnerships with parents to improve knowledge about newborn screening and to support parents whose infants have positive screening tests. This may be especially important for parents from lower income and marginalized groups.