Women's Cancer, Fox Chase Cancer Center, Philadelphia, Pennsylvania 19111, USA.
Cancer Nurs. 2013 May-Jun;36(3):E33-8. doi: 10.1097/NCC.0b013e3182642cb5.
Because of the significantly increased lifetime risk of ovarian cancer associated with inheritance of a germline mutation in the BRCA1/2 genes, women with a deleterious mutation are recommended to undergo risk-reducing salpingo-oophorectomy at age 35 years or once child-bearing is complete. Significant time is often spent by nurses trained in genetics providing counseling to improve the decision-making process. The decision to undergo surgery is complex and laden with several sources of uncertainty.
We conducted a qualitative study among female carriers of deleterious BRCA1/2 mutations to address these uncertainties.
Twelve qualitative interviews were conducted with women who had received a positive BRCA1/2 test result to explore their understanding of ovarian cancer risk, prevention options, and resource needs. Qualitative content analysis was performed.
Significant information gaps in level of risk, other factors associated with ovarian cancer, and details of prophylactic oophorectomy were identified. Personal experience with cancer colored the degree of risk perception associated with the inherited mutation. Fear of the adverse effects of surgical menopause, both physiological and psychosocial, was common. Women expressed interest in hearing from other women facing the same decision.
Women facing the decision to undergo risk-reducing salpingo-oophorectomy have several information gaps and unmet needs despite comprehensive counseling.
Based on our findings, we make specific recommendations that will guide nursing practice and future research.
由于携带 BRCA1/2 基因种系突变会显著增加患卵巢癌的终身风险,因此建议携带有害突变的女性在 35 岁或完成生育后进行降低风险的输卵管卵巢切除术。接受过基因学培训的护士通常会花费大量时间提供咨询,以改善决策过程。手术的决定是复杂的,存在多种不确定性来源。
我们对携带有害 BRCA1/2 突变的女性进行了定性研究,以解决这些不确定性。
对 12 名接受阳性 BRCA1/2 检测结果的女性进行了定性访谈,以探讨她们对卵巢癌风险、预防选择和资源需求的理解。进行了定性内容分析。
确定了风险水平、与卵巢癌相关的其他因素以及预防性卵巢切除术的详细信息方面存在显著的信息差距。个人患癌经历影响了对遗传性突变相关风险的感知程度。对手术性绝经的不良影响(生理和心理社会方面)的担忧很常见。女性表示有兴趣听取其他面临相同决策的女性的意见。
尽管接受了全面咨询,但面临进行降低风险的输卵管卵巢切除术的女性仍存在多个信息差距和未满足的需求。
基于我们的发现,我们提出了具体建议,将指导护理实践和未来的研究。