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父母对新生儿筛查的了解以及对囊性纤维化检测假阳性结果的反应。

Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing.

作者信息

Tluczek A, Mischler E H, Farrell P M, Fost N, Peterson N M, Carey P, Bruns W T, McCarthy C

机构信息

Department of Pediatrics, University of Wisconsin, Madison.

出版信息

J Dev Behav Pediatr. 1992 Jun;13(3):181-6.

PMID:1613113
Abstract

Neonatal screening for cystic fibrosis (CF) has become feasible through analyzing dried blood specimens for immunoreactive trypsinogen (IRT), but the benefits and risks of such a screening program remain to be delineated. This study, a survey of the parents of 104 Wisconsin infants with false-positive IRT tests, showed parents had knowledge deficits about neonatal screening in general, misconceptions about test results, and high levels of anxiety. Parenting behaviors were reportedly unchanged during the usual 3-day waiting period between the news of the abnormal screening test and the diagnostic sweat test. Most, but not all, parents were relieved by negative sweat test results subsequent to the abnormal IRT test. Factors associated with continued parental concern included having less than a high school education and/or having an infant with low Apgar scores. Additionally, those contacted by telephone were more likely to have misinformation and lingering concerns about the presence of CF in their child.

摘要

通过分析干血标本中的免疫反应性胰蛋白酶原(IRT)来进行新生儿囊性纤维化(CF)筛查已变得可行,但此类筛查项目的益处和风险仍有待明确。这项研究对104名威斯康星州IRT检测呈假阳性的婴儿的父母进行了调查,结果显示父母总体上对新生儿筛查知识了解不足,对检测结果存在误解,且焦虑程度较高。据报道,在异常筛查检测结果公布到诊断性汗液检测之间通常的3天等待期内,育儿行为没有变化。大多数(但并非全部)父母在IRT检测异常后,因汗液检测结果为阴性而感到宽慰。与父母持续担忧相关的因素包括受教育程度低于高中和/或婴儿阿氏评分较低。此外,通过电话联系的父母更有可能对孩子是否患有CF存在错误信息和持续担忧。

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