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Patient experience of uncertainty in cancer genomics: a systematic review.
Genetics in Medicine ( IF 8.8 ) Pub Date : 2020-05-19 , DOI: 10.1038/s41436-020-0829-y
Nicci Bartley 1 , Christine Napier 2 , Megan Best 1 , Phyllis Butow 1
Affiliation  

While genomics provides new clinical opportunities, its complexity generates uncertainties. This systematic review aimed to summarize what is currently known about the experience of uncertainty for adult patients undergoing cancer genomic testing. A search of five databases (2001 to 2018) yielded 6508 records. After removing duplicates, abstract/title screening, and assessment of full articles, ten studies were included for quality appraisal and data extraction. Qualitative studies were subjected to thematic analysis, and quantitative data were summarized using descriptive statistics. Cancer genomic results reduced uncertainty for patients regarding treatment decisions but did not reduce uncertainty in the risk context. Qualitative and quantitative data synthesis revealed four themes: (1) coexisting uncertainties, (2) factors influencing uncertainty, (3) outcomes of uncertainty, and (4) coping with uncertainty. Uncertainty can motivate, or be a barrier to, pursuing cancer genomic testing. Appraisal of uncertainty influences the patient experience of uncertainty, the outcome of uncertainty for patients, as well as the coping strategies utilized. While this systematic review found that appraisal of uncertainty is important to the patients' experience of uncertainty in the cancer genomic context, more mixed methods longitudinal research is needed to address the complexities that contribute to patient uncertainty across the process.

中文翻译:

癌症基因组学不确定性的患者体验:系统评价。

虽然基因组学提供了新的临床机会,但其复杂性产生了不确定性。本系统评价旨在总结目前已知的关于接受癌症基因组检测的成年患者的不确定性体验。对五个数据库(2001 年至 2018 年)的搜索产生了 6508 条记录。在去除重复、摘要/标题筛选和整篇文章评估后,十项研究被纳入质量评估和数据提取。对定性研究进行主题分析,并使用描述性统计总结定量数据。癌症基因组结果减少了患者对治疗决策的不确定性,但并未减少风险背景下的不确定性。定性和定量数据综合揭示了四个主题:(1)共存的不确定性,(2) 影响不确定性的因素,(3) 不确定性的结果,以及 (4) 应对不确定性。不确定性可以激发或成为追求癌症基因组测试的障碍。对不确定性的评估会影响患者对不确定性的体验、患者对不确定性的结果以及所使用的应对策略。虽然这项系统评价发现,对不确定性的评估对于患者在癌症基因组环境中的不确定性体验很重要,但需要更多混合方法的纵向研究来解决在整个过程中导致患者不确定性的复杂性。患者不确定性的结果,以及所使用的应对策略。虽然这项系统评价发现,对不确定性的评估对于患者在癌症基因组环境中的不确定性体验很重要,但需要更多混合方法的纵向研究来解决在整个过程中导致患者不确定性的复杂性。患者不确定性的结果,以及所使用的应对策略。虽然这项系统评价发现,对不确定性的评估对于患者在癌症基因组环境中的不确定性体验很重要,但需要更多混合方法的纵向研究来解决在整个过程中导致患者不确定性的复杂性。
更新日期:2020-05-19
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