Parental support for newborn screening for cystic fibrosis

Acta Paediatr. 2011 Feb;100(2):209-15. doi: 10.1111/j.1651-2227.2010.02031.x. Epub 2010 Oct 15.

Abstract

Aim: To describe the attitudes among parents towards including cystic fibrosis (CF) in the newborn screening programme and towards the potential knowledge of their own carrier status.

Methods: A questionnaire with three to five response categories and an information leaflet was posted to 143 CF parents, 3 matched diabetes and 3 matched population parents, the response rate being 85%, 74% and 70%, respectively. Comparisons between groups were made with statistical tests for independent groups.

Results: Eighty-six percent of CF, 70% of diabetes and 77% of population parents were in favour of newborn screening for CF, 47%, 45% and 50%, respectively, wished to know their CF carrier status. The parental attitude was independent of the age of the child, as well as delay of diagnosis and well-being of the CF child at the time of diagnosis. Sixty percent of the CF parents experienced the diagnosis as delayed.

Conclusion: Parents in Sweden support CF newborn screening. Half of the parents wanted to know their CF carrier status.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Attitude*
  • Child
  • Child, Preschool
  • Cystic Fibrosis / diagnosis*
  • Humans
  • Infant
  • Infant, Newborn
  • Neonatal Screening*
  • Parents / psychology*
  • Surveys and Questionnaires