Vulnerable Child Syndrome and Newborn Screening Carrier Results for Cystic Fibrosis or Sickle Cell

Abstract

To measure parental perceptions of child vulnerability, as a precursor to developing a population-scale mechanism to mitigate harm after newborn screening. Participants were parents of infants aged 2-5months. Parental perceptions of child vulnerability were assessed with an adapted version of the Vulnerable Baby Scale. The scale was included in the script for a largerstudy of telephone follow-up for 2 newborn blood screening samples (carrier status for cystic fibrosis or sicklecell hemoglobinopathy). A comparison sample was added using a paper survey with well-baby visits to an urban/suburban clinic. Sample sizes consisted of 288 parents in the cystic fibrosis group, 426 in the sickle cell hemoglobinopathy group, and 79 in the clinic comparison group. Parental perceptions of child vulnerability were higher in the sickle cellgroup than cystic fibrosis group (P<.0001), and both were higher than the clinic comparison group (P<.0001). Parental perceptions of child vulnerability were inversely correlated with parental age (P<.002) and lower health literacy (P<.015, sickle cell hemoglobinopathy group only). Increased parental perceptions of child vulnerability seem to be a bona fide complication of incidental newborn blood screening findings, and healthcare professionals should be alert to the possibility. From a public health perspective, we recommend routine follow-up after incidental findings to mitigate psychosocial harm.