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NCCN Guidelines® Insights: Genetic/Familial High-Risk Assessment: Colorectal, Version 1.2021.NCCN 指南®洞察:遗传/家族性高风险评估:结直肠癌,第 1.2021 版。
J Natl Compr Canc Netw. 2021 Oct 15;19(10):1122-1132. doi: 10.1164/jnccn.2021.0048.
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Ann Behav Med. 2022 Apr 2;56(4):405-413. doi: 10.1093/abm/kaab057.
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Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.与 BRCA、PALB2、CHEK2 和 ATM 携带者的家庭成员共享基因检测结果。
Patient Educ Couns. 2021 Apr;104(4):720-725. doi: 10.1016/j.pec.2020.12.019. Epub 2021 Jan 5.
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Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic, Version 2.2021, NCCN Clinical Practice Guidelines in Oncology.遗传/家族性高风险评估:乳腺癌、卵巢癌和胰腺癌,第 2.2021 版,NCCN 肿瘤学临床实践指南。
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一项试点干预措施促进遗传性癌症风险患者与其伴侣之间关于生育问题沟通的可行性、可接受性及结果

Feasibility, acceptability, and outcomes of a pilot intervention facilitating communication about family building between patients with inherited cancer risk and their partners.

作者信息

Dean Marleah, Baker Jonathan T, Reblin Maija, Hintz Elizabeth A, Vadaparampil Susan T, Haskins Carolyn, Quinn Gwendolyn P

机构信息

Department of Communication, University of South Florida, Tampa, FL, USA.

Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.

出版信息

PEC Innov. 2022 Jun 1;1:100055. doi: 10.1016/j.pecinn.2022.100055. eCollection 2022 Dec.

DOI:10.1016/j.pecinn.2022.100055
PMID:37213754
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10194220/
Abstract

OBJECTIVE

This study reports the feasibility, acceptability, and outcomes of a longitudinal, communication pilot intervention for patients with inherited cancer risk and their partners.

METHODS

Couples were recruited through social media and snowball sampling. At Time 1 and 2, 15 couples completed a structured discussion task about family building concerns and decisions, followed by an online post-discussion questionnaire and dyadic interview to provide feedback about the experience. Interview data were analyzed to assess outcomes using applied thematic analysis.

RESULTS

Participants reported the intervention created an opportunity for honest disclosure of family building goals and concerns. Participants also stated the structured nature of the discussion task was useful and did not cause additional stress. The intervention ultimately aided at-risk patients and their partners to realize their concordant concerns, discover/confront discordant concerns, and mutually agree upon next steps.

CONCLUSIONS

This pilot intervention is feasible and acceptable. Furthermore, it offers a framework to facilitate effective communication about family building between patients with inherited cancer risk and their partners.

INNOVATION

This intervention is the first conversational tool designed for at-risk patients and their partners.

摘要

目的

本研究报告了一项针对有遗传性癌症风险的患者及其伴侣的纵向沟通试点干预措施的可行性、可接受性和结果。

方法

通过社交媒体和滚雪球抽样招募夫妇。在第1阶段和第2阶段,15对夫妇完成了一项关于生育相关问题和决策的结构化讨论任务,随后进行了在线讨论后问卷调查和二元访谈,以提供对该体验的反馈。使用应用主题分析法对访谈数据进行分析以评估结果。

结果

参与者报告称,该干预措施为坦诚披露生育目标和担忧创造了机会。参与者还表示,讨论任务的结构化性质很有用,且不会造成额外压力。该干预措施最终帮助有风险的患者及其伴侣认识到他们一致的担忧,发现/面对不一致的担忧,并就下一步达成共同意见。

结论

这项试点干预措施是可行且可接受的。此外,它提供了一个框架,以促进有遗传性癌症风险的患者与其伴侣之间就生育问题进行有效沟通。

创新点

这项干预措施是首个为有风险的患者及其伴侣设计的对话工具。