Department of Breast Medical Oncology, University of Texas MD Anderson Cancer Center, Houston, TX 77230, USA.
Fam Cancer. 2011 Dec;10(4):673-9. doi: 10.1007/s10689-011-9460-z.
Individuals at high risk for hereditary cancers often receive genetic counseling and testing at tertiary care centers; however, they may receive care for long-term management of their cancer risk in community settings. Communication of genetic test results to health care providers outside of tertiary care settings can facilitate the long-term management of high risk individuals. This study assessed women's communication of BRCA1/BRCA2 genetic test results to health care providers outside of tertiary care settings (termed "outside" health care providers, or OHCPs) and women's perceptions regarding communication of results. Women (n = 312) who underwent BRCA1/BRCA2 genetic counseling and testing completed a questionnaire assessing whether or not they shared test results with OHCPs and perceptions regarding the communication of test results to OHCPs. Most (72%) shared genetic test results with OHCPs. Women with no personal history of cancer were more likely to have shared results compared to women with a personal history of cancer. Mutation status did not significantly predict sharing of genetic information. Most reported positive perceptions regarding the disclosure of genetic test results to OHCPs. The majority did not report any concerns about potential insurance discrimination (88%) and indicated that OHCPs were able to appropriately address their questions (81%). Although most women shared their genetic test results with OHCPs, those with a personal history of cancer may need further encouragement to share this information. Tertiary care centers should facilitate outreach and education with OHCPs in order to assure appropriate long-term cancer risk management for high risk populations.
具有遗传性癌症高风险的个体通常在三级护理中心接受遗传咨询和检测；然而，他们可能在社区环境中接受癌症风险的长期管理。将遗传测试结果传达给三级护理环境之外的医疗保健提供者可以促进高风险个体的长期管理。本研究评估了女性向三级护理环境之外的医疗保健提供者（称为“外部”医疗保健提供者，或 OHCP）传达 BRCA1/BRCA2 遗传测试结果的情况，以及女性对结果传达的看法。接受 BRCA1/BRCA2 遗传咨询和检测的女性（n=312）完成了一份问卷，评估她们是否与 OHCP 共享测试结果，以及对向 OHCP 传达测试结果的看法。大多数（72%）与 OHCP 共享了遗传测试结果。与有癌症个人病史的女性相比，没有癌症个人病史的女性更有可能共享结果。突变状态并未显著预测遗传信息的共享。大多数女性对向 OHCP 透露遗传测试结果的看法表示积极。大多数女性没有报告任何对潜在保险歧视的担忧（88%），并表示 OHCP 能够恰当地回答她们的问题（81%）。尽管大多数女性与 OHCP 共享了她们的遗传测试结果，但那些有癌症个人病史的女性可能需要进一步鼓励来共享这些信息。三级护理中心应促进与 OHCP 的外联和教育，以确保高危人群的适当长期癌症风险管理。
