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High Satisfaction and Low Distress in Breast Cancer Patients One Year after BRCA-Mutation Testing without Prior Face-to-Face Genetic Counseling.在未进行事先面对面遗传咨询的情况下进行BRCA突变检测一年后,乳腺癌患者的满意度高且痛苦程度低。
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More breast cancer patients prefer BRCA-mutation testing without prior face-to-face genetic counseling.更多乳腺癌患者希望在未经面对面遗传咨询的情况下进行 BRCA 基因突变检测。
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本文引用的文献

1
Use and evaluation of an individually tailored website for counselees prior to breast cancer genetic counseling.在乳腺癌遗传咨询前为咨询对象使用和评估个性化网站。
J Cancer Educ. 2011 Dec;26(4):670-81. doi: 10.1007/s13187-011-0227-x.
2
A review of intervention studies that seek to increase colorectal cancer screening among African-Americans.一项旨在提高非裔美国人结直肠癌筛查率的干预研究综述。
Am J Health Promot. 2010 Nov-Dec;25(2):92-9. doi: 10.4278/ajhp.080826-LIT-162.
3
American Society of Clinical Oncology policy statement update: genetic and genomic testing for cancer susceptibility.美国临床肿瘤学会政策声明更新:癌症易感性的基因和基因组检测
J Clin Oncol. 2010 Feb 10;28(5):893-901. doi: 10.1200/JCO.2009.27.0660. Epub 2010 Jan 11.
4
Cancer statistics, 2009.2009年癌症统计数据。
CA Cancer J Clin. 2009 Jul-Aug;59(4):225-49. doi: 10.3322/caac.20006. Epub 2009 May 27.
5
Influence of family history and preventive health behaviors on colorectal cancer screening in African Americans.家族史和预防性健康行为对非裔美国人结直肠癌筛查的影响。
Cancer. 2008 Jul 15;113(2):276-85. doi: 10.1002/cncr.23550.
6
Coming full circle: a reciprocal-engagement model of genetic counseling practice.回归原点:遗传咨询实践的双向参与模式
J Genet Couns. 2007 Dec;16(6):713-28. doi: 10.1007/s10897-007-9113-4. Epub 2007 Oct 13.
7
The frequency of a positive family history for colorectal cancer: a population-based study in the Netherlands.结直肠癌家族史阳性的频率:荷兰一项基于人群的研究
Neth J Med. 2006 Nov;64(10):367-70.
8
A discrete choice experiment of preferences for genetic counselling among Jewish women seeking cancer genetics services.一项针对寻求癌症遗传学服务的犹太女性对遗传咨询偏好的离散选择实验。
Br J Cancer. 2006 Nov 20;95(10):1448-53. doi: 10.1038/sj.bjc.6603451.
9
Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: a pilot study.开发一种沟通辅助工具以促进与高危乳腺癌家族中未患病女性会诊时的风险沟通:一项试点研究。
J Genet Couns. 2006 Oct;15(5):393-405. doi: 10.1007/s10897-006-9023-x.
10
Older adults' attitudes about continuing cancer screening later in life: a pilot study interviewing residents of two continuing care communities.老年人对晚年继续进行癌症筛查的态度:一项对两个持续护理社区居民进行访谈的试点研究。
BMC Geriatr. 2006 Aug 3;6:10. doi: 10.1186/1471-2318-6-10.

关注患者需求和偏好可能会改善结直肠癌的遗传咨询。

Focusing on patient needs and preferences may improve genetic counseling for colorectal cancer.

作者信息

Salemink Simone, Dekker Nicky, Kets Carolien M, van der Looij Erica, van Zelst-Stams Wendy A G, Hoogerbrugge Nicoline

机构信息

Department of Human Genetics 836, Radboud University Nijmegen Medical Centre, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.

出版信息

J Genet Couns. 2013 Feb;22(1):118-24. doi: 10.1007/s10897-012-9519-5. Epub 2012 Aug 23.

DOI:10.1007/s10897-012-9519-5
PMID:22914993
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3553404/
Abstract

During cancer genetic counseling, different items which counselors consider important are discussed. However, relatively little empirical evidence exists regarding the needs and preferences of counselees. In this study needs and preferences were assessed from counselees with a personal and/or family history of colorectal cancer (CRC), who were referred for genetic counseling regarding CRC. They received a slightly modified version of the QUOTE-GENE(ca) questionnaire prior to their first visit to the Hereditary Cancer Clinic. Response rate was 60 % (48/80 participants). Counselees rated the importance of 45 items assessing their needs and preferences regarding the content and process of genetic counseling. Participants rated the items regarding discussion of information about their familial CRC risk (100 %) and preventive options (98 %) as important or very important. Fewer participants rated items concerning general information on genetics as important. Sensitive communication during counseling was considered very important by a large percentage of counselees. Generally, no major differences were seen between participants in relation to individual characteristics. Our data suggest that focusing on familial CRC risk and surveillance options, in combination with sensitive communication may lead to better satisfaction with genetic counseling.

摘要

在癌症遗传咨询过程中,会讨论咨询师认为重要的不同事项。然而,关于咨询对象的需求和偏好,实证证据相对较少。在本研究中,对有结直肠癌(CRC)个人和/或家族史、因CRC被转介进行遗传咨询的咨询对象的需求和偏好进行了评估。他们在首次就诊于遗传性癌症诊所之前,收到了一份略作修改的QUOTE-GENE(ca)问卷。回复率为60%(48/80名参与者)。咨询对象对评估他们在遗传咨询内容和过程方面的需求和偏好的45个项目的重要性进行了评分。参与者将关于讨论其家族性CRC风险信息(100%)和预防方案(98%)的项目评为重要或非常重要。较少参与者将关于遗传学一般信息的项目评为重要。很大比例的咨询对象认为咨询过程中的敏感沟通非常重要。总体而言,参与者在个体特征方面没有明显差异。我们的数据表明,关注家族性CRC风险和监测方案,结合敏感沟通,可能会提高对遗传咨询的满意度。