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

项目摘要 利用产前基因筛查和诊断早期和准确诊断先天性畸形 PS&D是患者根据医学事实及其价值做出医疗决策的关键 关于怀孕，孩子，家庭，和生育。高质量、循证和 公平的产前护理，PS&D也很重要，因为先天性异常是主要的 这个国家婴儿死亡的原因。从测试中获得的数据是重要的;它可能会导致一些非- 因此，需要进行额外的手术，以优化新生儿的结局，或者，如果确定了严重的情况， 怀孕考虑到这些决定对病人和家属的影响，确保所有人都能接受这些决定是当务之急。 怀孕患者可以在知情的情况下做出符合其需求和价值观的PS&D决定。一个乌尔- 存在的问题：患者面临着重大障碍，无法就使用PS&D做出明智的决定， 第一步，以证据为基础，道德和公平地获得这些医疗保健资源。因此， 没有足够的机制为寻求prena的400万病人提供知情和公平的机会， 每年在美国的护理。这项研究的目的是确保怀孕的病人有资源 和支持所需的访问PS&D在知情和循证的方式（1）开发一个创新的， 有效的数字工具，以支持患者的决策和（2）贡献的基础知识，以促进 科学的方式，促进患者获得新的产前应用的基因组科学和技术， 奥吉。我们的中心假设是，通过关注患者参与度作为改善患者 结果，使用基于证据的人工智能（AI）驱动的患者参与工具将- 提高患者寻求信息和构建决策过程的能力，反过来，（1）在 增加了关于PS&D的知情决策，（2）减少了与这些决策相关的决策冲突， Ssions。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交流。 感谢PS&D和提供者努力构建以患者为中心的产前护理，了解不同的患者 人口的技术经验，资源和态度，它在产前护理决策的使用。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， 孕妇知情获得PS&D的机会仍未得到满足，解决了严重影响产前护理质量的因素， 安全性，安全性和结果。这些结果预计将对公共卫生产生重要的积极影响， 知情获取遗传技术的进步是医学伦理实践的基础， 医疗质量、可及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- 帮助怀孕患者及其伴侣做好准备，做出反映其 个人和父母的需求和偏好。

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.