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BRCA1/2 基因突变携带者决策指导在线工具的可行性评估。

Feasibility evaluation of an online tool to guide decisions for BRCA1/2 mutation carriers.

机构信息

Departments of Medicine and of Health Research and Policy, Stanford University School of Medicine, Stanford, CA 94305-5405, USA.

出版信息

Fam Cancer. 2013 Mar;12(1):65-73. doi: 10.1007/s10689-012-9577-8.

Abstract

Women with BRCA1 or BRCA2 (BRCA1/2) mutations face difficult decisions about managing their high risks of breast and ovarian cancer. We developed an online tool to guide decisions about cancer risk reduction (available at: http://brcatool.stanford.edu ), and recruited patients and clinicians to test its feasibility. We developed questionnaires for women with BRCA1/2 mutations and clinicians involved in their care, incorporating the System Usability Scale (SUS) and the Center for Healthcare Evaluation Provider Satisfaction Questionnaire (CHCE-PSQ). We enrolled BRCA1/2 mutation carriers who were seen by local physicians or participating in a national advocacy organization, and we enrolled clinicians practicing at Stanford University and in the surrounding community. Forty BRCA1/2 mutation carriers and 16 clinicians participated. Both groups found the tool easy to use, with SUS scores of 82.5-85 on a scale of 1-100; we did not observe differences according to patient age or gene mutation. General satisfaction was high, with a mean score of 4.28 (standard deviation (SD) 0.96) for patients, and 4.38 (SD 0.89) for clinicians, on a scale of 1-5. Most patients (77.5 %) were comfortable using the tool at home. Both patients and clinicians agreed that the decision tool could improve patient-doctor encounters (mean scores 4.50 and 4.69, on a 1-5 scale). Patients and health care providers rated the decision tool highly on measures of usability and clinical relevance. These results will guide a larger study of the tool's impact on clinical decisions.

摘要

携带有 BRCA1 或 BRCA2(BRCA1/2)突变的女性在管理其乳腺癌和卵巢癌高风险方面面临着艰难的决策。我们开发了一种在线工具来指导降低癌症风险的决策(可在以下网址获取:http://brcatool.stanford.edu),并招募了患者和临床医生来测试其可行性。我们为携带有 BRCA1/2 突变的女性和参与其治疗的临床医生开发了问卷,其中纳入了系统可用性量表(SUS)和医疗保健评估提供者满意度问卷(CHCE-PSQ)。我们招募了由当地医生或参与全国倡导组织就诊的 BRCA1/2 突变携带者,以及在斯坦福大学和周边社区行医的临床医生。共有 40 名 BRCA1/2 突变携带者和 16 名临床医生参与了研究。两组参与者均认为该工具易于使用,SUS 评分为 1-100 分制中的 82.5-85 分;我们未观察到患者年龄或基因突变对评分的影响。总体满意度较高,患者的平均得分为 4.28(标准差(SD)0.96),临床医生的平均得分为 4.38(SD 0.89),评分范围均为 1-5。大多数患者(77.5%)在家中使用该工具感到舒适。患者和临床医生均认为决策工具可以改善医患互动(1-5 分制的平均得分为 4.50 和 4.69)。患者和医疗保健提供者在可用性和临床相关性方面对决策工具给予了高度评价。这些结果将指导对该工具对临床决策影响的更大规模研究。

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Online tool to guide decisions for BRCA1/2 mutation carriers.
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