A Cross-sectional Study of Regret in Cancer Patients After Sharing Test Results for Pathogenic Germline Variants of Hereditary Cancers With Relatives
A Cross-sectional Study of Regret in Cancer Patients After Sharing Test Results for Pathogenic Germline Variants of Hereditary Cancers With Relatives
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DOI：
10.1097/ncc.0000000000001224
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发表时间：
2023-03-07
期刊：
影响因子：
2.6
通讯作者：
Takeda，Yuko
中科院分区：
文献类型：
--
作者：
Fukuzaki，Naomi;Kiyozumi，Yoshimi;Takeda，Yuko
背景全世界对全基因组/外显子组测序的研究正在增加。目的本研究的目的是调查与家庭成员共享单基因检测结果和整个外显子组测序结果的癌症患者后悔的发生情况和与之相关的推理。结果21例癌症患者中，8例患者没有后悔，9例患者有轻度后悔，4例患者有中度至重度后悔。患者认为分享是正确决定的原因包括：允许亲属和子女采取预防措施，双方都需要意识到癌症的遗传传播并为之做好准备，以及需要能够与他人讨论情况。另一方面，由于相关的焦虑，一些患者认为分享这一信息并不是一个好的决定。结论与亲属分享遗传性癌症的致病种系变异检测结果的怨恨倾向于较低。主要原因是患者认为自己能够通过分享来造福他人。
BackgroundResearch on whole genome/exome sequencing is increasing worldwide. However, challenges are emerging in relation to receiving germline pathogenic variant results and sharing them with relatives.ObjectiveThe aim of this study was to investigate the occurrence of and reasoning related to regret among patients with cancer who shared single-gene testing results and whole exome sequencing with family members.MethodsThis was a single-center, cross-sectional study. The Decision Regret Scale was administered, and descriptive questionnaires were used with 21 patients with cancer.ResultsEight patients were classified as having no regret, 9 patients were classified as having mild regret, and 4 patients were classified as having moderate to strong regret. Reasons patients felt that sharing was the right decision included the following: to allow relatives and children to take preventive measures, the need for both parties to be aware of and ready for the hereditary transmission of cancer, and the need to be able to discuss the situation with others. On the other hand, some patients did not think it was a good decision to share the information because of the associated anxiety.ConclusionsRegret over sharing test results for pathogenic germline variants of hereditary cancers with relatives tended to be low. The main reason was that patients believed that they were able to benefit others by sharing.