Patient and Contextual Factors in CFCT Decision Making

CFCT 决策中的患者和背景因素

• 批准号: 6836640
• 负责人: KATHLEEN J H SPARBEL
• 金额: $ 2.5万
• 依托单位: UNIVERSITY OF IOWA
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-08-01 至 2006-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6836640
• 关键词: attitude; audiotape; behavioral /social science research tag; clinical research; community health services; cystic fibrosis; decision making; genetic carriers; genetic counseling; genetic screening; health behavior; human pregnant subject; interview; nursing research; predoctoral investigator; prenatal care; women' s health

DESCRIPTION (provided by applicant): The 1997 NIH Consensus Statement on Cystic Fibrosis (CF) testing recommended CF carrier testing for high-risk individuals, pregnant women, and couples planning pregnancy. Informed consent in CF carrier testing is predicated upon individuals making rational decisions based on genetic testing information received in the clinical encounter. The decision making process also involves the interaction of patient and contextual factors within the unique features of decision-making. Little is known about how these factors influence the use of genetic knowledge in the decision making process. The purpose of this study is to describe patient and context variables contributing to decision making in Cystic Fibrosis Carrier Testing (CFCT) in pregnant females in the primary care setting. This descriptive qualitative study will use semi-structured interviews to identify how patients use genetic information of CFCT within the patient's own personal and contextual factors to make CFCT testing decisions in primary care practices in Iowa and Illinois. The study sample will consist of pregnant women receiving prenatal care in a community based clinic or private practice, who are offered CF carrier testing during their pregnancy. Demographic questions will describe the sample, which will be analyzed through descriptive statistics. Qualitative computer software will be used to categorize interview data, which will then be analyzed through content analysis of audiotaped and transcribed interview transcripts and field notes. Understanding patient and contextual factors influencing patient genetic decision-making is important for promoting rational and autonomous patient health care decisions. Understanding patient health care decision-making is key information in building knowledge of patient/health care system interplay and developing patient sensitive health care systems.

描述（由申请人提供）：1997 年 NIH 关于囊性纤维化 (CF) 检测的共识声明建议对高危个体、孕妇和计划怀孕的夫妇进行 CF 携带者检测。 CF 携带者检测中的知情同意取决于个人根据临床中收到的基因检测信息做出理性决定。决策过程还涉及患者和背景因素在决策独特特征内的相互作用。人们对这些因素如何影响决策过程中遗传知识的使用知之甚少。 本研究的目的是描述有助于初级保健机构中怀孕女性囊性纤维化携带者检测 (CFCT) 决策的患者和背景变量。这项描述性定性研究将使用半结构化访谈来确定患者如何在患者个人和背景因素中使用 CFCT 的遗传信息，以在爱荷华州和伊利诺伊州的初级保健实践中做出 CFCT 测试决策。研究样本将包括在社区诊所或私人诊所接受产前护理的孕妇，她们在怀孕期间接受 CF 携带者检测。人口统计问题将描述样本，并通过描述性统计进行分析。定性计算机软件将用于对访谈数据进行分类，然后通过录音和转录访谈笔录和现场笔记的内容分析来分析这些数据。了解影响患者遗传决策的患者和背景因素对于促进合理和自主的患者医疗保健决策非常重要。了解患者医疗保健决策是建立患者/医疗保健系统相互作用知识和开发患者敏感医疗保健系统的关键信息。