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乳腺癌易感性基因检测教育:患者对计算机程序或遗传咨询师的偏好。

Education about genetic testing for breast cancer susceptibility: patient preferences for a computer program or genetic counselor.

作者信息

Green M J, McInerney A M, Biesecker B B, Fost N

机构信息

Department of Humanities, Penn State College of Medicine, Hershey, Pennsylvania 17033, USA.

出版信息

Am J Med Genet. 2001 Sep 15;103(1):24-31. doi: 10.1002/ajmg.1501.

Abstract

The purpose of this study was to describe and compare patient preferences for a genetic counselor or an interactive computer program for various components of genetic education and counseling for breast cancer susceptibility. As part of a randomized intervention study on genetics education and counseling for breast cancer risk, 29 women at moderate risk were educated by both a genetic counselor and an interactive computer program. After both educational interventions, participants completed Likert-style and open-ended questionnaires about what they liked most and least about each intervention, and whether they preferred the counselor or computer for a variety of tasks. Participants were largely satisfied with both the computer program and the genetic counselor. A majority preferred the genetic counselor for addressing their concerns, discussing options and alternatives, being sensitive to emotional concerns, helping to make a decision, being a good listener, assuring understanding, helping to make a good choice, helping to understand genes and breast cancer, telling them what they needed to know, being respectful, setting a relaxed tone, and putting them at ease. However, a majority of the women either preferred the computer program or were neutral about allowing patients to learn at their own pace, helping to avoid embarrassment, making good use of time, explaining genes and breast cancer, and treating the patient as an adult. Qualitative analysis of open-ended questions affirmed that patients valued the personal interactions with the counselors, and liked having their specific questions answered. They liked that the computer was self-paced, informative and private, and could be used without causing embarrassment. We concluded that a computer literate, mostly white group of women at moderate risk for inherited susceptibility to breast cancer preferred interacting with a genetic counselor for personal, individualized components of the genetic counseling process, but accepted or preferred a computer program for being self-paced, private, and informative. By incorporating such a computer program into the genetic education process, it is possible that genetic counselors would be able to spend more time performing the personal, individualized components of genetic counseling.

摘要

本研究的目的是描述并比较患者对于遗传咨询师或交互式计算机程序在乳腺癌易感性遗传教育与咨询各个环节的偏好。作为一项关于乳腺癌风险遗传教育与咨询的随机干预研究的一部分,29名中度风险女性接受了遗传咨询师和交互式计算机程序的教育。在这两种教育干预之后,参与者完成了李克特式和开放式问卷,内容涉及她们对每种干预最喜欢和最不喜欢的方面,以及在各种任务中她们更喜欢咨询师还是计算机。参与者对计算机程序和遗传咨询师大体上都很满意。大多数人在解决她们的担忧、讨论选择和替代方案、对情感问题敏感、帮助做决定、善于倾听、确保理解、帮助做出好的选择、帮助理解基因和乳腺癌、告知她们所需了解的信息、表示尊重、营造轻松氛围以及让她们放松等方面更喜欢遗传咨询师。然而,大多数女性要么更喜欢计算机程序,要么对于让患者按照自己的节奏学习、避免尴尬、充分利用时间、解释基因和乳腺癌以及像对待成年人一样对待患者持中立态度。对开放式问题的定性分析证实,患者重视与咨询师的人际互动,喜欢自己的具体问题得到解答。她们喜欢计算机可以自主调节节奏、信息丰富且私密,使用时不会造成尴尬。我们得出结论,对于患遗传性乳腺癌中度风险、懂计算机且大多为白人的女性群体而言,在遗传咨询过程中涉及个人化的环节,她们更喜欢与遗传咨询师互动,但对于计算机程序的自主节奏、私密和信息丰富的特点,她们接受或表示更喜欢。通过将这样的计算机程序纳入遗传教育过程,遗传咨询师有可能能够花更多时间进行遗传咨询中个人化的环节。

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