Engaging Patients in Prenatal Genetic Testing Decisions as a Pathway to Improve Obstetric Outcomes

项目摘要 产前基因筛查和诊断对先天性畸形的早期准确诊断 测试(PS&D)对于患者根据医学事实和他们的价值观做出医疗决定至关重要 关于怀孕、孩子、家庭和生殖。高质量、基于证据的 公平的产前护理、PS和D也很重要，因为先天异常是主要的 这个国家婴儿死亡的原因。从测试中获得的数据是重要的；它可能导致一些不确定的数据。 DERGO附加程序以优化新生儿结局，或者，如果发现严重情况，则结束 怀孕了。考虑到这些决定对患者和家人的影响，当务之急是确保所有 孕妇可以在知情的情况下做出关于PS&D的决定，并满足他们的需求和价值观。一位呃- 存在问题：患者在做出关于PS&D的使用的知情决定时面临重大障碍 循证、合乎道德和公平地获得这些医疗资源的第一步。因此，有 机制不足，无法为400万寻求产前检查的患者提供知情和公平的机会- 在美国每年都有TAL护理。这项研究的目标是确保孕妇有足够的资源 以及通过以下方式以知情和循证的方式获取PS&D所需的支持：(1)开发 支持患者决策的动态数字工具；(2)贡献基础知识促进进步 以一种促进患者获得新的产前基因组科学和技术应用的方式-- 奥奇。我们的中心假设是，通过将患者参与度作为改善患者的关键驱动因素 结果，基于证据的人工智能(AI)驱动的患者参与工具的使用将- 提高患者寻求信息和构建决策过程的能力，反过来，(1)在- 减少关于PS&D的明智决策；(2)减少与这些决策相关的决策冲突。 幻象。该项目具有创新性，因为它将应用人工智能医疗技术来支持患者的知情接触。 接触PS&D和提供者构建以患者为中心的产前护理的努力，了解不同的患者 人群的技术经验、资源和对其在产前护理决策中使用的态度。这 这项研究意义重大，因为它将弥合现有数据中的差距，以克服持续存在的障碍。 Tients获得PS&D的知情机会仍未得到满足，解决了严重影响产前护理质量的因素 城市、安全和结果。这些结果预计将对公共卫生产生重要的积极影响，因为 知情获得基因技术进步是医学道德实践的基础， 医疗质量、可获得性和结果的关键组成部分。我们预计这项研究的结果将最终-- 帮助孕妇和他们的伴侣做好准备，做出明智的选择，反映他们的 作为个人和父母的需要和偏好。

PROJECT ABSTRACT The early and accurate diagnosis of congenital abnormalities using prenatal genetic screens and diagnostic tests (PS&D) is pivotal for patients to make healthcare decisions informed by medical facts and their values about pregnancy, children, family, and reproduction. A core component of high-quality, evidence-based, and equitable prenatal care, PS&D are also significant because congenital abnormalities are one of the leading causes of infant mortality in this country. The data obtained from testing is significant; it may lead some to un- dergo additional procedures to optimize neonatal outcomes or, if a serious condition is identified, to end the pregnancy. Given the ramifications of these decisions for the patient and family, it is a priority to ensure that all pregnant patients can make decisions about PS&D that are informed and meet their needs and values. An ur- gent problem exists: Patients face significant barriers to making informed decisions about the use of PS&D, the first step to evidence-based, ethical, and equitable access to these healthcare resources. As a result, there are insufficient mechanisms to provide informed and equitable access to the four million patients who seek prena- tal care in the U.S. each year. The goal of this study is to ensure that pregnant patients have the resources and support needed to access PS&D in an informed and evidence-based fashion by (1) developing an innova- tive digital tool to support patients' decision-making and (2) contributing fundamental knowledge to advance science in a way that promotes patients' access to new prenatal applications of genomic science and technol- ogy. Our central hypothesis is that, by focusing on patient engagement as a key driver to improve patient outcomes, the use of an evidence-based artificial-intelligence (AI) powered patient engagement tool will in- crease patients’ ability to seek information and structure a decision-making process that, in turn, (1) in- creases informed decisions about PS&D and (2) decreases decisional conflict associated with those deci- sions. This project is innovative because it will apply AI medical technologies to support patients' informed ac- cess to PS&D and providers' efforts to structure patient-centered prenatal care, understanding diverse patient populations' technology experiences, resources, and attitudes about its use in prenatal care decisions. This study is significant because it will bridge the gap in existing data needed to overcome persistent barriers to pa- tients' informed access to PS&D that remain unmet, addressing factors that critically impact prenatal care qual- ity, safety, and outcomes. These results are expected to have an important positive impact on public health, as informed access to advances in genetic technologies is foundational to the ethical practice of medicine and a key component of healthcare quality, access, and outcomes. We anticipate that this study’s findings will ulti- mately contribute to preparing pregnant patients and their partners to make informed choices that reflect their needs and preferences as individuals and parents.