Klapwijk Jasmijn E, Gitsels-van der Wal Janneke, Martin Linda, Verschoof-Puite Rendelien K, Elsinghorst Ellen, Henneman Lidewij
Department of Human Genetics and Amsterdam Reproduction and Development Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, 1007 MB Amsterdam, The Netherlands.
Department of Midwifery Science and Amsterdam Public Health Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, 1007 MB Amsterdam, The Netherlands.
Int J Neonatal Screen. 2025 Jan 8;11(1):5. doi: 10.3390/ijns11010005.
Newborn bloodspot screening (NBS) aims to detect treatable disorders in newborns to offer early interventions. According to the official Dutch national NBS guidance, parents in the Netherlands should be informed about NBS during pregnancy by maternity care providers (MCPs), providing two leaflets and oral information. This study investigated what, how, and when information about NBS is given during pregnancy according to Dutch MCPs. An online questionnaire was completed by 279 MCPs; 237 (84.9%) provided information to parents themselves, although 4.6% of them only did so postnatally, and 240 (86.0%) considered this the task of the MCP. Among the 237 MCPs, information was provided by personal conversation (59.9%) and by giving at least one leaflet (83.1%), while 25.7% only gave leaflets. Being a first pregnancy (45.1%) and parents' literacy (38.8%) influenced how MCPs provided information. Information was mostly provided at 34-37 weeks gestation (68.8%). Conversations mostly included giving information on when NBS will be performed (97.2%), the purpose of NBS (93.7%), how the test will be performed (92.3%), and participation being voluntary (80.3%). The results suggest that while most Dutch MCPs consider it their task to provide NBS information, its timing, method, and completeness do not always follow the established guidelines.
新生儿血斑筛查（NBS）旨在检测新生儿中可治疗的疾病，以便提供早期干预。根据荷兰官方国家NBS指南，荷兰的产妇护理提供者（MCPs）应在孕期向父母告知NBS情况，提供两份传单并进行口头告知。本研究调查了荷兰MCPs在孕期如何、何时以及提供了哪些关于NBS的信息。279名MCPs完成了一份在线问卷；237名（84.9%）亲自向父母提供了信息，不过其中4.6%的人仅在产后才这样做，240名（86.0%）认为这是MCP的任务。在237名MCPs中，通过个人交谈提供信息的占59.9%，至少提供一份传单的占83.1%，而仅提供传单的占25.7%。是否为头胎（45.1%）和父母的文化程度（38.8%）影响了MCPs提供信息的方式。信息大多在妊娠34 - 37周时提供（68.8%）。交谈内容大多包括告知NBS何时进行（97.2%）、NBS的目的（93.7%）、检测将如何进行（92.3%）以及参与是自愿的（80.3%）。结果表明，虽然大多数荷兰MCPs认为提供NBS信息是他们的任务，但其时间安排、方法和完整性并不总是遵循既定指南。
