Ioannou Liane, Massie John, Lewis Sharon, Collins Veronica, McClaren Belinda, Delatycki Martin B
1] Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, VIC, Australia [2] Department of Medicine, Monash University, Clayton, VIC, Australia.
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.
Eur J Hum Genet. 2014 Jul;22(7):859-65. doi: 10.1038/ejhg.2013.267. Epub 2013 Nov 20.
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.
囊性纤维化（CF）是白种人中最常见的严重常染色体隐性疾病。2006年，澳大利亚维多利亚州实施了一项基于人群的CF携带者筛查计划。目前，CF携带者筛查仅在私立医疗系统中提供。本研究的目的是确定公共医疗系统中孕妇对CF筛查的态度和看法。在两家公立医院的产前诊所招募孕妇，并邀请她们参与研究。将本研究结果与之前提供CF携带者状态筛查的研究进行比较。在参与者（n = 158）中，大多数年龄在25 - 34岁（66.1%），为白种人（45.8%）。与之前研究中接受筛查的人群相比，本研究中的参与者更年轻，受教育程度更低，收入也更低。未接受筛查的人群的知识水平明显低于接受筛查的人群。大多数参与者认为公共医疗系统应提供CF携带者筛查（80.5%），近一半的人希望在本次孕期接受筛查（49.7%）。为了使该计划公平，CF携带者状态筛查应在公共和私立医疗系统中都提供，理想情况下，使用者不应为此付费。
