Newborn screening for CF in a regional paediatric centre: The psychosocial effects of false-positive IRT results on parents

Newborn screening for CF in a regional paediatric centre: The psychosocial effects of false-positive IRT results on parents
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DOI:
10.1016/j.jcf.2006.09.001
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发表时间:
2007-05-01
影响因子:
5.2
通讯作者:
Brownlee, Keith G.
Brownlee, Keith G.
中科院分区:
医学2区
文献类型:
--
作者:
Moran, Janette;Quirk, Kirsten;Brownlee, Keith G.

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自1975年以来,利兹已建立了新生儿囊性纤维化筛查(CF)。目前的方法是测量IRT和基因分型。新生儿CF筛查导致少量但显著数量的假阳性。本研究采用半结构化访谈的方法,探讨了一组家长(N=21)对这一结果的社会心理反应。回答进行了分析,使用描述性统计和有效的内容分析。母亲描述了一系列的情绪在筛选过程中,包括焦虑,痛苦和不安。等待重复IRT测试结果被认为是情绪上最困难的阶段。讨论的重点是良好做法和CF服务的影响。(C)2006年欧洲囊性纤维化协会。Elsevier B.V.出版,保留所有权利。
Neonatal screening for cystic fibrosis (CF) has been established in Leeds since 1975. The current method is measuring IRT and genotyping. Newborn screening for CF results in a small but significant number of false positives. This study explored the psychosocial reactions to such results in a group of parents (N=21) using semi-structured interviews. Responses were analysed using descriptive statistics and well-validated content analysis.Mothers described a range of emotions during the screening process including anxiety, distress and upset. Waiting for the repeat IRT test results was identified as the most emotionally difficult stage. Discussion focuses on good practice and implications for CF services. (C) 2006 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.