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患者对肿瘤分子谱分析的看法:“为什么不做呢?”。

Patient perspectives on molecular tumor profiling: "Why wouldn't you?".

机构信息

University of Sydney, School of Psychology, Psycho-Oncology Co-operative Research Group (PoCoG), Level 6 North, Lifehouse C39Z, Sydney NSW, Sydney, 2006, Australia.

University of Technology Sydney, Graduate School of Health, Broadway NSW, Sydney, 2007, Australia.

出版信息

BMC Cancer. 2019 Jul 31;19(1):753. doi: 10.1186/s12885-019-5920-x.

Abstract

AIM

This study explored the attitudes of patients with advanced cancer towards MTP and return of results, prior to undergoing genomic testing within a research program.

METHODS

Participants were recruited as part of the longitudinal PiGeOn (Psychosocial Issues in Genomics in Oncology) study involving patients with advanced/metastatic solid cancer who had exhausted therapeutic options and who were offered MTP in order to identify cognate therapies. Twenty patients, selected by purposive sampling, were interviewed around the time they gave consent to MTP. Interviews were audio recorded, transcribed and analysed using thematic analysis. Themes identified in the transcripts were cross-validated via qualitative responses to the PiGeOn study survey (n = 569; 63%).

RESULTS

All interviewed participants gave consent to MTP without reservation. Three themes were identified and further supported via the survey responses: (1) Obvious agreement to participate, primarily because of desire for new treatments and altruism. (2) The black box - while participant knowledge of genomics was generally poor, faith in their oncologists and the scientific process encouraged them to proceed with testing; and (3) Survival is the priority - receiving treatment to prolong life was the priority for all participants, and other issues such as identification of a germline variant were generally seen as ancillary.

CONCLUSION

Having advanced cancer seemed to abrogate any potential concerns about MTP. Participants valued the research for varied reasons, but this was secondary to their priority to survive. While no negative attitudes toward MTP emerged, limitations in understanding of genomics were evident.

摘要

目的

本研究旨在探讨晚期癌症患者在接受基因组检测前对 MTP 和结果返还的态度,该研究是在一个研究项目中进行的。

方法

参与者是作为涉及晚期/转移性实体瘤患者的纵向 PiGeOn(肿瘤学中基因组学的心理社会问题)研究的一部分招募的,这些患者已经用尽了治疗选择,并提供 MTP 以确定同源治疗方法。通过目的抽样选择了 20 名患者,在他们同意 MTP 的同时进行了访谈。访谈进行了录音、转录,并使用主题分析进行了分析。通过对 PiGeOn 研究调查(n=569;63%)的定性回应,对转录本中确定的主题进行了交叉验证。

结果

所有接受访谈的参与者都毫无保留地同意 MTP。通过调查回应进一步支持了三个主题:(1)明显同意参与,主要是因为渴望新的治疗方法和利他主义;(2)黑箱——尽管参与者对基因组学的了解普遍较差,但对他们的肿瘤学家和科学过程的信任促使他们继续进行测试;(3)生存是首要任务——所有参与者的首要任务是接受治疗以延长生命,而识别种系变异等其他问题通常被视为次要问题。

结论

患有晚期癌症似乎消除了对 MTP 的任何潜在担忧。参与者出于各种原因重视研究,但这是他们生存优先的次要考虑因素。虽然没有出现对 MTP 的负面态度,但对基因组学的理解有限。

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