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基于计算机的决策辅助工具对乳腺癌易感性基因检测的知识、认知及意愿的影响:一项随机对照试验。

Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: a randomized controlled trial.

作者信息

Green Michael J, Peterson Susan K, Baker Maria Wagner, Harper Gregory R, Friedman Lois C, Rubinstein Wendy S, Mauger David T

机构信息

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

出版信息

JAMA. 2004 Jul 28;292(4):442-52. doi: 10.1001/jama.292.4.442.

Abstract

CONTEXT

As the availability of and demand for genetic testing for hereditary cancers increases in primary care and other clinical settings, alternative or adjunct educational methods to traditional genetic counseling will be needed.

OBJECTIVE

To compare the effectiveness of a computer-based decision aid with standard genetic counseling for educating women about BRCA1 and BRCA2 genetic testing.

DESIGN

Randomized controlled trial conducted from May 2000 to September 2002.

SETTING AND PARTICIPANTS

Outpatient clinics offering cancer genetic counseling at 6 US medical centers enrolled 211 women with personal or family histories of breast cancer.

INTERVENTIONS

Standard one-on-one genetic counseling (n = 105) or education by a computer program followed by genetic counseling (n = 106).

MAIN OUTCOME MEASURES

Participants' knowledge, risk perception, intention to undergo genetic testing, decisional conflict, satisfaction with decision, anxiety, and satisfaction with the intervention. Counselor group measures were administered at baseline and after counseling. Computer group measures were administered at baseline, after computer use, and after counseling. Testing decisions were assessed at 1 and 6 months. Outcomes were analyzed by high vs low risk of carrying a BRCA1 or BRCA2 mutation.

RESULTS

Both groups had comparable demographics, prior computer experience, medical literacy, and baseline knowledge of breast cancer and genetic testing, and both counseling and computer use were rated highly. Knowledge scores increased in both groups (P<.001) regardless of risk status, and change in knowledge was greater in the computer group compared with the counselor group (P =.03) among women at low risk of carrying a mutation. Perception of absolute risk of breast cancer decreased significantly after either intervention among all participants. Intention to undergo testing decreased significantly after either intervention among low-risk but not high-risk women. The counselor group had lower mean scores on a decisional conflict scale (P =.04) and, in low-risk women, higher mean scores on a satisfaction-with-decision scale (P =.001). Mean state anxiety scores were reduced by counseling but were within normal ranges for both groups at baseline and after either intervention, regardless of risk status.

CONCLUSIONS

An interactive computer program was more effective than standard genetic counseling for increasing knowledge of breast cancer and genetic testing among women at low risk of carrying a BRCA1 or BRCA2 mutation. However, genetic counseling was more effective than the computer at reducing women's anxiety and facilitating more accurate risk perceptions. These results suggest that this computer program has the potential to stand alone as an educational intervention for low-risk women but should be used as a supplement to genetic counseling for those at high risk.

摘要

背景

随着初级保健及其他临床环境中遗传性癌症基因检测的可及性和需求增加,将需要传统遗传咨询之外的替代或辅助教育方法。

目的

比较基于计算机的决策辅助工具与标准遗传咨询在对女性进行BRCA1和BRCA2基因检测教育方面的效果。

设计

2000年5月至2002年9月进行的随机对照试验。

地点和参与者

美国6家医疗中心提供癌症遗传咨询的门诊诊所招募了211名有乳腺癌个人或家族史的女性。

干预措施

标准一对一遗传咨询(n = 105)或通过计算机程序进行教育后再进行遗传咨询(n = 106)。

主要结局指标

参与者的知识、风险认知、进行基因检测的意愿、决策冲突、对决策的满意度、焦虑程度以及对干预措施的满意度。咨询师组的指标在基线时和咨询后进行测量。计算机组的指标在基线时、使用计算机后以及咨询后进行测量。在1个月和6个月时评估检测决策。根据携带BRCA1或BRCA2突变的高风险与低风险对结局进行分析。

结果

两组在人口统计学特征、既往计算机使用经验、医学素养以及乳腺癌和基因检测的基线知识方面具有可比性,并且对咨询和计算机使用的评价都很高。无论风险状态如何,两组的知识得分均有所提高(P<.001),在携带突变低风险的女性中,计算机组的知识变化大于咨询师组(P =.03)。所有参与者在任何一种干预后,对乳腺癌绝对风险的认知均显著降低。在低风险而非高风险女性中,任何一种干预后进行检测的意愿均显著降低。咨询师组在决策冲突量表上的平均得分较低(P =.04),在低风险女性中,在决策满意度量表上的平均得分较高(P =.001)。咨询降低了平均状态焦虑得分,但无论风险状态如何,两组在基线时和任何一种干预后的平均状态焦虑得分均在正常范围内。

结论

对于携带BRCA1或BRCA2突变低风险的女性,交互式计算机程序在增加乳腺癌和基因检测知识方面比标准遗传咨询更有效。然而,在减轻女性焦虑和促进更准确的风险认知方面,遗传咨询比计算机更有效。这些结果表明,该计算机程序有可能单独作为低风险女性的教育干预措施,但对于高风险女性应作为遗传咨询的补充。

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