Contextual Factors in Cystic Fibrosis Carrier Testing

描述(由申请人提供)：1997年NIH关于囊性纤维化(CF)测试的共识声明建议对高危个人、孕妇和计划怀孕的夫妇进行CF携带者测试。CF携带者检测中的知情同意是基于个人根据临床接触中收到的基因检测信息做出合理决定的前提。决策过程还涉及患者和背景因素在决策的独特特征内的相互作用。关于这些因素如何影响遗传知识在决策过程中的使用，我们知之甚少。 这项研究的目的是描述在初级保健环境中对怀孕女性进行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爱荷华州和伊利诺伊州的初级保健实践中，在患者自身的个人和背景因素中使用CFCT的遗传信息来做出CFCT测试决定。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，并将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，然后通过录音和转录的访谈记录和实地笔记的内容分析对其进行分析。了解影响患者基因决策的患者和背景因素对于促进理性和自主的患者保健决策非常重要。了解病人的保健决策是建立病人/保健系统相互作用的知识和开发对病人敏感的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.