Improved Prenatal Genetic Screening Decision Making through Interactive Technology

通过互动技术改善产前基因筛查决策

• 批准号: 8869498
• 负责人: ERIN ROTHWELL
• 金额: $ 22.35万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-03-06 至 2017-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8869498
• 关键词: Address; Age; American College of Obstetricians and Gynecologists; Arts; Child health care; Clinic; Clinical; Collaborations; Computers; Conflict (Psychology); Couples; Decision Making; Development; Distress; Effectiveness; Engineering; Environment; Evaluation; Fetus; First Pregnancy Trimester; Focus Groups; Genetic Risk; Genetic Screening; Genetic screening method; Health; Healthcare; Individual; Information Dissemination; Interview; Knowledge; Learning; Life; Measures; Methods; Neonatal Screening; Outcome; Participant; Patient Education; Patients; Population; Pregnancy; Pregnant Women; Prenatal care; Process; Provider; Qualifying; Randomized Controlled Trials; Recommendation; Research; Risk; Series; Site; Surveys; Technology; Testing; Time; United States National Institutes of Health; Universities; Utah; Woman; Work; base; clinically relevant; design; ethical legal social implication; experience; genome sequencing; heuristics; high risk; improved; insight; novel strategies; pregnant; prenatal; programs; prototype; public health relevance; reproductive; satisfaction; screening; tool; usability

 DESCRIPTION (provided by applicant): The purpose of this application is to 1) develop a prenatal screening gaming application prototype (PS-GAP) and 2) conduct a preliminary assessment of the PS-GAP on knowledge, satisfaction, and decisional conflict about prenatal genetic screening for pregnant women and their partners. Specific Aim 1: Create a gaming tool for pregnant women and their partners to use to improve knowledge and to assess personal values about prenatal genetic screening. Methods: Develop a prototype in collaboration with gaming experts and clinical experts, leveraging preliminary studies and related work in the healthcare field. The prototype will then be revised in an iterative process with various stakeholder groups. Specific Aim 2: Assess the gaming prototype on knowledge, user satisfaction and decisional conflict about prenatal genetic screening among pregnant women and their partners. Methods: Determine usability and acceptability through both heuristic evaluation and user testing. Pregnant women and the partners will independently engage with the PS-GAP and then compare their choices. All participants will complete post-surveys measuring knowledge, satisfaction and decisional conflict. A sub group will be randomly selected for in-depth interviews about their experiences. Future Research: This R21 will demonstrate feasibility of the development and preliminary utility of a gaming tool on knowledge and decisional conflict related to prenatal genetic screening. Future research will be a multi-site randomized control trial to test the effectiveness of this approach on relevant outcomes including knowledge, distress, and satisfaction with decision-making. Potential Impact: Because of its focus on improved patient decision-making and engagement, this type of tool has widespread application. For example, it can augment other clinically relevant materials throughout pregnancy and be potentially useful in other value-laden genetic testing environments. Research Team: Our team is uniquely qualified to achieve the aims of this study. This application includes collaboration with the University of Utah's Entertainment Arts and Engineering program, one of the top programs in the U.S for game development, and the P20 NIH Utah Center for Excellence in Ethical, Legal and Social Research focused on population screening in prenatal screening and newborn screening in women's and children's health care.

 描述(申请人提供)：本申请的目的是1)开发一个产前筛查游戏应用程序原型(PS-GAP)和2)对PS-GAP对孕妇及其伴侣关于产前基因筛查的知识、满意度和决策冲突进行初步评估。具体目标1：为孕妇和她们的伴侣创建一个游戏工具，用于提高关于产前基因筛查的知识和评估个人价值。方法：利用医疗保健领域的初步研究和相关工作，与游戏专家和临床专家合作开发原型。然后，原型将在与不同利益攸关方团体的迭代过程中进行修订。具体目标2：评估游戏原型对孕妇及其伴侣产前基因筛查的知识、用户满意度和决策冲突的影响。方法：通过启发式评估和用户测试来确定可用性和可接受性。孕妇和伴侣将独立参与PS-GAP，然后比较她们的选择。所有参与者都将完成测量知识、满意度和决策冲突的后调查。将随机选择一个小组，就他们的经历进行深入采访。未来研究：R21将展示开发一种关于产前基因筛查相关知识和决策冲突的游戏工具的可行性和初步实用价值。未来的研究将是一个多地点的 随机对照试验，以测试这种方法对相关结果的有效性，包括知识、痛苦和对决策的满意度。潜在影响：由于其专注于改善患者的决策和参与度，这种类型的工具得到了广泛的应用。例如，它可以在整个怀孕期间增加其他临床相关材料，并在其他有价值的基因测试环境中潜在地有用。研究团队：我们的团队是唯一有资格实现本研究目标的团队。这项申请包括与犹他大学的娱乐艺术与工程项目(美国顶级游戏开发项目之一)以及P20 NIH犹他州卓越伦理、法律和社会研究中心的合作，该中心专注于产前筛查中的人群筛查和妇女儿童保健中的新生儿筛查。