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一项支持癌症遗传咨询对象告知其高危亲属的干预措施的设计与可行性

Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.

作者信息

de Geus Eveline, Eijzenga Willem, Menko Fred H, Sijmons Rolf H, de Haes Hanneke C J M, Aalfs Cora M, Smets Ellen M A

机构信息

Department of Medical Psychology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.

Cancer Family Clinic, Netherlands Cancer Institute, Amsterdam, The Netherlands.

出版信息

J Genet Couns. 2016 Dec;25(6):1179-1187. doi: 10.1007/s10897-016-9948-7. Epub 2016 Apr 22.

Abstract

Cancer genetic counselees receive individualized information regarding heightened risks and medical recommendations which is also relevant for their at-risk relatives. Unfortunately, counselees often insufficiently inform these relatives. We designed an intervention aimed at improving counselees' knowledge regarding which at-risk relatives to inform and what information to disclose, their motivation to disclose, and their self-efficacy. The intervention, offered by telephone by trained psychosocial workers, is based on the principles of Motivational Interviewing. Phase 1 of the intervention covers agenda setting, exploration, and evaluation, and phase 2 includes information provision, enhancing motivation and self-efficacy, and brainstorming for solutions to disseminate information within the family. Fidelity and acceptability of the intervention were assessed using recordings of intervention sessions and by counselee self-report. A total of 144 counselees participated. Psychosocial workers (n = 5) delivered the intervention largely as intended. Counselees highly appreciated the content of the intervention and the psychosocial workers who delivered the intervention. In the sessions, psychosocial workers provided additional and/or corrective information, and brainstorming for solutions was performed in 70 %. These results indicate that this intervention is feasible and warrants testing in clinical practice. For this, a randomized controlled trial is currently in progress to test the intervention's efficacy.

摘要

癌症遗传咨询对象会收到关于风险增加和医疗建议的个性化信息,这些信息对其有风险的亲属也同样重要。不幸的是,咨询对象往往没有充分告知这些亲属。我们设计了一项干预措施,旨在提高咨询对象关于告知哪些有风险亲属以及披露哪些信息的知识、他们披露信息的动机以及自我效能感。由经过培训的心理社会工作者通过电话提供的这项干预措施,基于动机性访谈的原则。干预的第一阶段包括议程设定、探索和评估,第二阶段包括信息提供、增强动机和自我效能感,以及集思广益寻求在家庭内部传播信息的解决方案。通过干预过程的录音和咨询对象的自我报告来评估干预措施的保真度和可接受性。共有144名咨询对象参与。心理社会工作者(n = 5)基本按计划实施了干预。咨询对象高度赞赏干预的内容以及实施干预的心理社会工作者。在这些过程中,心理社会工作者提供了额外和/或纠正性信息,70%的过程进行了集思广益寻求解决方案。这些结果表明这项干预措施是可行的,值得在临床实践中进行测试。为此,目前正在进行一项随机对照试验来测试该干预措施的效果。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2fb5/5114329/dacdf726db8f/10897_2016_9948_Fig1_HTML.jpg

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