Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia.
Department of Primary Care Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
Fam Cancer. 2022 Jan;21(1):21-33. doi: 10.1007/s10689-021-00232-6. Epub 2021 Feb 19.
The decision to have risk-reducing salpingo-oophorectomy (RRSO) by BRCA mutation carriers to reduce the risk of ovarian cancer is difficult. The choice involves trade-offs in terms of its risks and benefits. To date, understanding the decision-making needs of RRSO among Southeast Asian BRCA mutation carriers is limited. This study aimed to explore the decision-making needs of Malaysian BRCA mutation carriers as an exemplar for the Southeast Asian community. In-depth interviews and clinic observations were conducted with 31 BRCA mutation carriers and analysed thematically. The core theme identified was 'Coping with complex information and alleviating uncertainties' with the following subthemes: (1) the need for an adjustment period, (2) information support, (3) social support and, (4) religious support. We found that women required time to accept their BRCA mutation status before they were ready to make a risk-reducing choice; that understanding complex genetic information and multiple risk management options can be an overwhelming experience; and obtaining further information and a second opinion were challenging. Many described the need for experiential information from other peer-carriers who had undergone RRSO. Support from their spouse and family members was thought to be essential for them to feel reassured with their decision. Many relied on religion to positively cope with cancer risk and cancer worry; Muslim BRCA carriers sought religious guidance through prayers and Islamic fatwas to feel more certain about their RRSO decision. These findings underscore the importance of the provision of resources and support that includes input from peers, husband, family members and religion to underpin the decision-making needs of Malaysian BRCA mutation carriers considering RRSO.
进行 BRCA 基因突变携带者的预防性输卵管卵巢切除术（RRSO）以降低卵巢癌风险的决策是困难的。该选择涉及到风险和收益的权衡。迄今为止，对于东南亚 BRCA 基因突变携带者 RRSO 的决策需求的理解是有限的。本研究旨在探索马来西亚 BRCA 基因突变携带者的决策需求，以作为东南亚社区的范例。对 31 名 BRCA 基因突变携带者进行了深入访谈和临床观察，并进行了主题分析。确定的核心主题是“应对复杂信息和减轻不确定性”，其下有以下几个方面：（1）调整期的需求；（2）信息支持；（3）社会支持；（4）宗教支持。我们发现，女性在准备做出降低风险的选择之前，需要时间来接受自己的 BRCA 基因突变状况；理解复杂的遗传信息和多种风险管理选择可能是一种压倒性的体验；获得更多信息和第二意见是具有挑战性的。许多人描述了从已经接受 RRSO 的其他同行携带者那里获得经验信息的需求。配偶和家庭成员的支持被认为对她们做出决定感到放心是至关重要的。许多人依靠宗教来积极应对癌症风险和癌症担忧；穆斯林 BRCA 携带者通过祈祷和伊斯兰教法来寻求宗教指导，以对 RRSO 决策感到更加确定。这些发现强调了提供资源和支持的重要性，包括同行、丈夫、家庭成员和宗教的意见，以满足马来西亚 BRCA 基因突变携带者 RRSO 决策的需求。
