关键词: Informed decision-making Non-invasive prenatal testing Prenatal screening Qualitative meta-synthesis

Mesh : Cell-Free Nucleic Acids / blood Choice Behavior Decision Making Down Syndrome / blood diagnosis Female Humans Informed Consent Patient Preference Pregnancy Pregnant Women Prenatal Diagnosis / psychology Qualitative Research Trisomy 13 Syndrome / blood diagnosis Trisomy 18 Syndrome / blood diagnosis

来  源:   DOI:10.1186/s12884-018-2168-4   PDF(Sci-hub)   PDF(Pubmed)

Abstract:
BACKGROUND: Non-invasive prenatal testing (NIPT) can be used to accurately detect fetal chromosomal anomalies early in pregnancy by assessing cell-free fetal DNA present in maternal blood. The rapid diffusion of NIPT, as well as the ease and simplicity of the test raises concerns around informed decision-making and the potential for routinization. Introducing NIPT in a way that facilitates informed and autonomous decisions is imperative to the ethical application of this technology. We approach this imperative by systematically reviewing and synthesizing primary qualitative research on women\'s experiences with and preferences for informed decision-making around NIPT.
METHODS: We searched multiple bibliographic databases including Ovid MEDLINE, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), and ISI Web of Science Social Sciences Citation Index (SSCI). Our review was guided by integrative qualitative meta-synthesis, and we used a staged coding process similar to that of grounded theory to conduct our analysis.
RESULTS: Thirty empirical primary qualitative research studies were eligible for inclusion. Women preferred to learn about NIPT from their clinicians, but they expressed dissatisfaction with the quality and quantity of information provided during counselling and often sought information from a variety of other sources. Women generally had a good understanding of test characteristics, and the factors of accuracy, physical risk, and test timing were the critical information elements that they used to make informed decisions around NIPT. Women often described NIPT as easy or just another blood test, highlighting threats to informed decision-making such as routinization or a pressure to test.
CONCLUSIONS: Women\'s unique circumstances modulate the information that they value and require most in the context of making an informed decision. Widened availability of trustworthy information about NIPT as well as careful attention to the facilitation of counselling may help facilitate informed decision-making.
BACKGROUND: PROSPERO 2018 CRD42018086261 .
摘要:
背景:非侵入性产前检测(NIPT)可用于通过评估母体血液中存在的无细胞胎儿DNA来准确检测妊娠早期的胎儿染色体异常。NIPT的快速扩散,以及测试的简便性和简单性引起了人们对知情决策和程序化潜力的担忧。以促进知情和自主决策的方式引入NIPT对于该技术的道德应用至关重要。我们通过系统地回顾和综合有关妇女在NIPT周围的知情决策经验和偏好的主要定性研究来解决这一问题。
方法:我们搜索了多个书目数据库,包括OvidMEDLINE,EBSCO护理和相关健康文献累积指数(CINAHL),和ISIWebofScience社会科学引文索引(SSCI)。我们的综述以综合定性荟萃综合为指导,我们使用了类似于扎根理论的分阶段编码过程来进行分析。
结果:30项经验性主要定性研究研究符合纳入条件。女性更喜欢从临床医生那里了解NIPT,但是他们对咨询期间提供的信息的质量和数量表示不满,并经常从各种其他来源寻求信息。女性普遍对考试特点有很好的认识,以及准确性的因素,身体风险,和测试时间是他们用来围绕NIPT做出明智决策的关键信息元素。女性经常将NIPT描述为简单或只是另一种血液检查,强调对知情决策的威胁,如程序化或测试压力。
结论:在做出明智决定的背景下,妇女的独特环境调节了她们重视和最需要的信息。关于NIPT的可信赖信息的广泛提供以及对便利咨询的认真关注可能有助于促进知情决策。
背景:PROSPERO2018CRD42018086261。
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