Franková Věra, Dohnalová Alena, Pešková Karolína, Hermánková Renata, O'Driscoll Riona, Ješina Pavel, Kožich Viktor
Department of Pediatrics and Adolescent Medicine, Charles University First Faculty of Medicine and General University Hospital, Ke Karlovu 2, 128 04 Prague 2, Czech Republic;
Institute for Medical Humanities, First Faculty of Medicine, Charles University, Karlovo náměstí 40, 128 08 Prague 2, Czech Republic.
Int J Neonatal Screen. 2019 Sep 18;5(3):35. doi: 10.3390/ijns5030035. eCollection 2019 Sep.
Appropriate and timely education about newborn screening (NBS) helps to foster benefits such as prompt follow up, to promote parents' autonomy via informed consent and minimize the harms such as reducing the impact of NBS false-positive results. The aim of this study was to ascertain how mothers are informed about NBS in the Czech Republic and to identify the variables associated with awareness about NBS. The questionnaires evaluating awareness and its determinants were mailed to a random sample of 3000 mothers 3 months post-delivery. The overall response rate was 42%. We analysed 1100 questionnaires and observed that better awareness about NBS was significantly associated with age, parity, number of information sources, child health status, size of maternity hospital and an obstetrician as the source of prenatally obtained information. Although the majority of mothers (77%) in our study recalled being informed by a physician or nurse in the neonatal ward, results have revealed that over 40% of participants did not have sufficient awareness about the principal aspects of NBS. Several measures including seminars for healthcare providers and the development and distribution of new educational materials were adopted to improve parental education about NBS in the Czech Republic.
关于新生儿筛查（NBS）的适当且及时的教育有助于带来诸如及时跟进等益处，通过知情同意促进父母的自主权，并将危害降至最低，比如减少NBS假阳性结果的影响。本研究的目的是确定在捷克共和国母亲们是如何获知NBS的，并识别与NBS知晓度相关的变量。评估知晓度及其决定因素的问卷被邮寄给3000名产后3个月的母亲的随机样本。总体回复率为42%。我们分析了1100份问卷，观察到对NBS更好的知晓度与年龄、胎次、信息来源数量、儿童健康状况、妇产医院规模以及作为产前获取信息来源的产科医生显著相关。尽管在我们的研究中大多数母亲（77%）回忆起是在新生儿病房由医生或护士告知的，但结果显示超过40%的参与者对NBS的主要方面没有足够的知晓度。捷克共和国采取了多项措施，包括为医疗保健提供者举办研讨会以及开发和分发新的教育材料，以改善关于NBS的家长教育。
