Feasibility evaluation of an online tool to guide decisions for BRCA1/2 mutation carriers.
Feasibility evaluation of an online tool to guide decisions for BRCA1/2 mutation carriers.
复制标题
在线工具的可行性评估，以指导BRCA1/2突变载体的决策。
DOI：
10.1007/s10689-012-9577-8
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发表时间：
2013-03
期刊：
影响因子：
2.2
通讯作者：
Kurian AW
中科院分区：
文献类型：
--
作者：
Schackmann EA;Munoz DF;Mills MA;Plevritis SK;Kurian AW
携带BRCA1或BRCA2（BRCA1/2）突变的女性面临着管理乳腺癌和卵巢癌高风险的艰难决定。我们开发了一个在线工具来指导有关降低癌症风险的决策（可在www.example.com上获得），并招募了患者和临床医生来测试其可行性。我们为BRCA1/2突变的女性和参与其护理的临床医生开发了问卷，其中包括系统可用性量表（SUS）和医疗保健评估中心提供者满意度问卷（CHCE-PSQ）。我们招募了当地医生或参加国家倡导组织的BRCA 1/2突变携带者，我们招募了在斯坦福大学和周围社区执业的临床医生。40名BRCA1/2突变携带者和16名临床医生参与了研究。两组人都发现该工具易于使用，SUS评分为82.5 - 85分（1 - 100分）;我们没有观察到患者年龄或基因突变的差异。总体满意度很高，患者的平均评分为4.28（标准差（SD）0.96），临床医生的平均评分为4.38（SD 0.89），评分范围为1 - 5。大多数患者（77.5%）在家中使用该工具感到舒适。患者和临床医生都同意该决策工具可以改善患者与医生的接触（平均分为4.50和4.69，1 - 5分）。患者和医疗保健提供者高度评价决策工具的可用性和临床相关性的措施。这些结果将指导该工具对临床决策影响的更大研究。
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.