Contextual Factors in Cystic Fibrosis Carrier Testing

囊性纤维化携带者检测中的背景因素

• 批准号: 6932302
• 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/6932302
• 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建立在个人根据临床接触中收到的基因检测信息做出理性决定的基础上。决策过程还涉及患者和环境因素在决策的独特特点的相互作用。对于这些因素如何影响遗传知识在决策过程中的应用，人们知之甚少。