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乳腺癌遗传咨询的知识价值链:预测与沟通流程的实证评估

The knowledge value-chain of genetic counseling for breast cancer: an empirical assessment of prediction and communication processes.

作者信息

Amara Nabil, Blouin-Bougie Jolyane, Jbilou Jalila, Halilem Norrin, Simard Jacques, Landry Réjean

机构信息

Department of Management, Pavillon Palasis-Prince, Laval University, 2325, rue de la Terrasse, Local 1516, Quebec, QC, G1V 0A6, Canada.

New Brunswick Medical Training Centre and School of Psychology, University of Monction, Moncton, NB, Canada.

出版信息

Fam Cancer. 2016 Jan;15(1):1-17. doi: 10.1007/s10689-015-9835-7.

Abstract

The aim of this paper is twofold: to analyze the genetic counseling process for breast cancer with a theoretical knowledge transfer lens and to compare generalists, medical specialists, and genetic counselors with regards to their genetic counseling practices. This paper presents the genetic counseling process occurring within a chain of value-adding activities of four main stages describing health professionals' clinical practices: (1) evaluation, (2) investigation, (3) information, and (4) decision. It also presents the results of a cross-sectional study based on a Canadian medical doctors and genetic counselors survey (n = 176) realized between July 2012 and March 2013. The statistical exercise included descriptive statistics, one-way ANOVA and post-hoc tests. The results indicate that even though all types of health professionals are involved in the entire process of genetic counseling for breast cancer, genetic counselors are more involved in the evaluation of breast cancer risk, while medical doctors are more active in the decision toward breast cancer risk management strategies. The results secondly demonstrate the relevance and the key role of genetic counselors in the care provided to women at-risk of familial breast cancer. This paper presents an integrative framework to understand the current process of genetic counseling for breast cancer in Canada, and to shed light on how and where health professionals contribute to the process. It also offers a starting point for assessing clinical practices in genetic counseling in order to establish more clearly where and to what extent efforts should be undertaken to implement future genetic services.

摘要

本文的目的有两个

一是从理论知识转移的视角分析乳腺癌的遗传咨询过程,二是比较全科医生、医学专科医生和遗传咨询师在遗传咨询实践方面的情况。本文介绍了在四个主要阶段的增值活动链中发生的遗传咨询过程,这四个阶段描述了卫生专业人员的临床实践:(1)评估,(2)调查,(3)信息提供,(4)决策。本文还呈现了一项基于2012年7月至2013年3月间对加拿大医生和遗传咨询师进行的调查(n = 176)的横断面研究结果。统计分析包括描述性统计、单因素方差分析和事后检验。结果表明,尽管所有类型的卫生专业人员都参与了乳腺癌遗传咨询的全过程,但遗传咨询师更多地参与乳腺癌风险评估,而医生在乳腺癌风险管理策略的决策方面更为积极。其次,结果证明了遗传咨询师在为有家族性乳腺癌风险的女性提供护理方面的相关性和关键作用。本文提出了一个综合框架,以理解加拿大目前乳腺癌遗传咨询的过程,并阐明卫生专业人员如何以及在何处对该过程做出贡献。它还为评估遗传咨询中的临床实践提供了一个起点,以便更清楚地确定应在何处以及在多大程度上努力实施未来的遗传服务。

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