Contextual Factors in Cystic Fibrosis Carrier Testing

描述（由申请人提供）：1997年美国国立卫生研究院关于囊性纤维化（CF）检测的共识声明建议对高危人群、孕妇和计划怀孕的夫妇进行CF携带者检测。CF携带者检测的知情同意是基于个人在临床接触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决策的独特功能内的背景因素的相互作用。很少有人知道这些因素如何影响遗传知识在决策过程中的使用。 本研究的目的是描述患者和背景变量有助于决策的囊性纤维化载体检测（CFCT）在怀孕的女性在初级保健设置。这项描述性定性研究将使用半结构化访谈，以确定患者如何使用CFCT的遗传信息，在患者自己的个人和背景因素，使CFCT检测决定在初级保健实践中，在爱荷华州和伊利诺伊州。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，这些孕妇在怀孕期间接受CF载体检测。人口统计学问题将描述样本，并通过描述性统计进行分析。将使用定性计算机软件对访谈数据进行分类，然后通过对录音和转录的访谈记录和实地记录进行内容分析。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。了解患者的医疗保健决策是建立患者/医疗保健系统相互作用的知识和发展患者敏感的医疗保健系统的关键信息。

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.