title: Attitudes and opinions of pregnant women who are not offered cystic fibrosis carrier screening.
abstract: Cystic fibrosis (CF) is the most common severe, autosomal recessive disease among Caucasians. A population-based CF carrier screening programme was implemented in Victoria, Australia, in 2006. Carrier screening for CF is currently only offered in the private health system. The aim of this study was to determine the attitudes and opinions of pregnant women in the public health system, towards screening for CF. Pregnant women were recruited in the antenatal clinics of two public hospitals, and invited to participate in the study. Results of this study were compared with previous studies where screening for CF carrier status was offered. Of the participants (n=158), the majority were aged 25-34 years old (66.1%) and were Caucasian (45.8%). Compared with those who were offered screening (reported in previous studies) participants in the current study were younger, had a lower level of education and a lower income. Knowledge was significantly lower in those who were not offered screening compared with those who were offered screening. The majority of participants believe CF carrier screening should be offered in the public health system (80.5%) and almost half would have liked to receive an offer of screening during their current pregnancy (49.7%). In order for the programme to be equitable, screening for CF carrier status needs to be offered in both the public and private health system and ideally should be at no cost to the user.
authors.affiliation: 1] Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, VIC, Australia [2] Department of Medicine, Monash University, Clayton, VIC, Australia.
authors.forename: Liane
authors.initials: L
authors.lastname: Ioannou
authors.affiliation: 1] Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, VIC, Australia [2] Department of Respiratory Medicine, Royal Children's Hospital, Parkville, VIC, Australia [3] Department of Paediatrics, University of Melbourne, Parkville, VIC, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Massie
authors.affiliation: Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, VIC, Australia.
authors.forename: Sharon
authors.initials: S
authors.lastname: Lewis
authors.affiliation: Andrology Australia, Monash Institute of Medical Research, Clayton, VIC, Australia.
authors.forename: Veronica
authors.initials: V
authors.lastname: Collins
authors.affiliation: Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, VIC, Australia.
authors.forename: Belinda
authors.initials: B
authors.lastname: McClaren
authors.affiliation: 1] Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, VIC, Australia [2] Department of Medicine, Monash University, Clayton, VIC, Australia [3] Department of Paediatrics, University of Melbourne, Parkville, VIC, Australia [4] Clinical Genetics, Austin Health, Heidelberg, VIC, Australia.
authors.forename: Martin B
authors.initials: MB
authors.lastname: Delatycki
mesh_terms: D000328:Adult; D001294:Attitude to Health; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000235:genetics*; D005260:Female; D005820:Genetic Testing; D006801:Humans; D011247:Pregnancy; D012959:Socioeconomic Factors