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

让患者参与产前基因检测决策作为改善产科结果的途径

• 批准号: 10658430
• 负责人: Ruth Farrell
• 金额: $ 81.58万
• 依托单位: CLEVELAND CLINIC LERNER COM-CWRU
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-14 至 2027-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10658430
• 关键词: Address; Aneuploidy; Artificial Intelligence; Attitude; COVID-19 pandemic; Caring; Child; Clinical; Clinical Practice Guideline; Communication; Complex; Conflict (Psychology); Congenital Abnormality; Country; Data; Decision Aid; Decision Making; Decision Support Systems; Diagnostic tests; Discipline of obstetrics; Early Diagnosis; Equity; Ethics; Event; Exposure to; Face; Family; Genetic; Genetic Screening; Goals; Health; Health Personnel; Healthcare; Human; Individual; Infant; Infant Mortality; Insurance Coverage; Knowledge; Lead; Learning; Life; Measures; Medical; Medical Technology; Medicine; Outcome; Outcome Measure; Parents; Pathway interactions; Patient-Focused Outcomes; Patients; Policies; Pregnancy; Prenatal Diagnosis; Prenatal care; Probability; Procedures; Process; Provider; Public Health; Quality of Care; Quality of life; Reproduction; Resources; Risk; Safety; Science; Specialist; Structure; Surveys; Technology; Testing; Time; Training; Uncertainty; Visit; Work; Workload; accurate diagnosis; care delivery; digital; digital tool; education resources; evidence base; experience; fetal; follow-up; genetic technology; genetic testing; genetic variant; genome sciences; health care availability; health care quality; health information technology; improved; improved outcome; infant death; innovation; learning engagement; neonatal outcome; obstetric outcomes; patient engagement; patient oriented; patient population; preference; pregnant; prenatal; stem; testing access; tool; treatment as usual

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.

项目摘要