Parents' experience with positive newborn screening results for cystic fibrosis
Parents' experience with positive newborn screening results for cystic fibrosis
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DOI：
10.1007/s00431-019-03343-6
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发表时间：
2019-06-01
影响因子：
3.6
通讯作者：
Nennstiel, Uta
中科院分区：
文献类型：
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作者：
Brockow, Inken;Nennstiel, Uta
在德国，自2016年9月以来，囊性纤维化（CF）筛查已成为新生儿筛查的一部分。由于假阳性筛查结果造成的心理伤害风险是一个长期关注的问题。我们调查了父母的CF筛查过程中的看法在巴伐利亚州和沟通后，积极的筛查结果与问卷。截至2018年8月，192名儿童在阳性CF筛查结果后接受了最终诊断测试，105个家庭（54.7%）完成了问卷调查。其中，只有30名父母获得了关于新生儿筛查的信息，尽管这在德国是强制性的。由CF专家（28.6%）告知阳性筛查结果的父母对所提供的信息更满意（80.0%对产科病房告知的50%），并且直到最终诊断测试的延迟时间更短。77.7%的家庭从获得筛查结果到进行诊断检测的间隔时间超过3d。结论：在短时间内进行最终诊断检测并获得满意的信息是重要的。因此，CF中心应该直接告知父母阳性筛查结果，并且只有在接下来的几天内进行汗液测试才有可能。
In Germany, screening for cystic fibrosis (CF) is part of the newborn screening since September 2016. The risk of psychological harm due to false-positive screening results is a longstanding concern. We investigated the parents' perception of the CF screening process in Bavaria and the communication after positive screening results with a questionnaire. Until August 2018, 192 children went through a final diagnostic testing after a positive CF screening result, and 105 (54.7%) families completed the questionnaire. Of these, only 30 parents obtained information about the newborn screening by a physician, despite this being mandatory in Germany. Parents being informed by a CF specialist (28.6%) about the positive screening result were more satisfied with the given information (80.0 versus 50% informed by the maternity ward), and the delay until the final diagnostic testing was shorter. More than 3days between the information about the screening result and the diagnostic testing was too long for 77.7% of the families.Conclusion: Performing final diagnostic testing with only short delays and receiving satisfactory information is important. Therefore, parents should be informed directly by a CF center about positive screening results and only when sweat testing is possible within the next days.