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

Michael H Farrell1, Alexandra M Sims2, Alison La Pean Kirschner3

  • 1Department of Pediatrics and Adolescent Medicine, Mayo Clinic, Rochester, MN; Center for Patient Care and Outcomes Research, Medical College of Wisconsin, Milwaukee, WI.

The Journal of Pediatrics
|August 23, 2020
PubMed

Insights

Parental perceptions of child vulnerability increase with incidental newborn blood screening results, particularly for sickle cell hemoglobinopathy. Routine follow-up is recommended to mitigate potential psychosocial harm.

Area of Science:

  • Genetics and Public Health
  • Pediatric Psychology

Background:

  • Newborn blood screening identifies infants at risk for serious conditions.
  • Incidental findings can cause parental anxiety and perceptions of child vulnerability.
  • Mechanisms to mitigate harm from screening are needed.

Purpose of the Study:

  • To measure parental perceptions of child vulnerability after newborn screening.
  • To inform the development of population-level harm mitigation strategies.

Main Methods:

  • Parents of infants (2-5 months) completed the Vulnerable Baby Scale.
  • Data collected during follow-up for cystic fibrosis and sickle cell hemoglobinopathy screening.
  • A comparison group used paper surveys during well-baby visits.

Main Results:

  • Parental vulnerability perceptions were higher in sickle cell (n=426) and cystic fibrosis (n=288) groups than the clinic comparison group (n=79).
  • Perceptions were higher in the sickle cell group compared to the cystic fibrosis group.
  • Vulnerability perceptions correlated inversely with parental age and lower health literacy.

Conclusions:

  • Incidental newborn screening findings increase parental perceptions of child vulnerability.
  • Healthcare professionals should recognize and address this potential complication.
  • Routine follow-up for incidental findings is recommended to mitigate psychosocial harm.
Abstract

Keywords:
communicationgenetic screeningincidental findings

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