School of Psychology, The University of Sydney, Sydney, Australia.
Cancer Theme, Garvan Institute of Medical Research, Darlinghurst, Australia.
Genet Med. 2020 Sep;22(9):1450-1460. doi: 10.1038/s41436-020-0829-y. Epub 2020 May 19.
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.
虽然基因组学为临床带来了新的机遇,但它的复杂性也带来了不确定性。本系统评价旨在总结目前已知的癌症基因组检测成人患者对不确定性的体验。通过对五个数据库(2001 年至 2018 年)进行检索,共获得 6508 条记录。在去除重复项、摘要/标题筛选和全文评估后,纳入了 10 项研究进行质量评估和数据提取。定性研究采用主题分析,定量数据采用描述性统计进行总结。癌症基因组结果降低了患者在治疗决策方面的不确定性,但并没有降低风险方面的不确定性。定性和定量数据综合分析揭示了四个主题:(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;(4)应对不确定性。不确定性既可以成为患者进行癌症基因组检测的动力,也可能成为其障碍。对不确定性的评估会影响患者对不确定性的体验、不确定性对患者的结果,以及患者所采用的应对策略。虽然本系统评价发现,在癌症基因组背景下,对不确定性的评估对患者的不确定性体验很重要,但需要更多的混合方法纵向研究来解决导致患者在整个过程中产生不确定性的复杂因素。