关键词: BRCA Decision-making Lynch syndrome Prophylactic surgery

来  源:   DOI:10.1186/s13053-024-00278-4   PDF(Pubmed)

Abstract:
BACKGROUND: Risk-reducing gynecological surgery (RRGS) is a prophylactic procedure that may be offered to BRCA1, BRCA2, and Lynch syndrome (LS) mutation carriers to reduce the risk of developing gynecological cancer. This study was conducted to better understand patients\' information needs and evaluate how patients weigh different sources of information in their decision-making process surrounding RRGS.
METHODS: This study used a qualitative approach to understanding women\'s perspectives towards RRGS. Semi-structured interviews were conducted virtually with 8 women. Women offered RRGS between 35 and 70 years of age who are English-speaking and have an identifiable BRCA or LS mutation were included. Data from interviews was coded with constant comparative analysis to develop themes.
RESULTS: Of the eight women, six had selected to undergo either prophylactic hysterectomy or oophorectomy: 5 decided yes to RRGS; 1 decided no; 2 were undecided. Thematic analysis found that the key factors affecting women\'s decisions around prophylactic surgery were cancer risk, surgical menopause, and psychological readiness. To make an informed decision, women relied most heavily on information provided by healthcare professionals (e.g. doctors, genetic counselors) and family members with prior cancer experience. However, some women reported that they did not feel adequately informed enough to make a decision and identified COVID-19 as a significant barrier affecting access to information.
CONCLUSIONS: This qualitative study revealed the key sources of information influencing attitudes regarding RRGS and how women consulted different sources of information to reach a decision. Results underscore the need for greater attention to women\'s information needs in the context of psychological readiness, particularly amidst the pandemic. Research involving a larger sample size may help to better inform how support can be provided to individuals with BRCA and LS mutations considering RRGS.
摘要:
背景:降低风险的妇科手术(RRGS)是一种预防性程序,可用于BRCA1,BRCA2和Lynch综合征(LS)突变携带者,以降低患妇科癌症的风险。进行这项研究是为了更好地了解患者的信息需求,并评估患者在围绕RRGS的决策过程中如何权衡不同的信息来源。
方法:本研究采用定性的方法来了解女性对RRGS的看法。几乎对8名妇女进行了半结构化访谈。提供RRGS的女性年龄在35至70岁之间,他们说英语,并且具有可识别的BRCA或LS突变。通过不断的比较分析对访谈数据进行编码,以制定主题。
结果:在8位女性中,6人选择接受预防性子宫切除术或卵巢切除术:5人决定接受RRGS;1人决定不接受RRGS;2人尚未决定.专题分析发现,影响妇女决定预防性手术的关键因素是癌症风险,手术更年期,和心理准备。做出明智的决定,妇女最依赖医疗保健专业人员提供的信息(如医生、遗传咨询师)和有癌症经验的家庭成员。然而,一些女性报告称,她们没有充分了解信息,无法做出决定,并认为COVID-19是影响信息获取的重要障碍.
结论:这项定性研究揭示了影响RRGS态度的关键信息来源,以及女性如何咨询不同的信息来源以做出决定。结果强调,在心理准备的背景下,需要更多地关注女性的信息需求,尤其是在大流行期间。涉及更大样本量的研究可能有助于更好地告知如何为考虑RRGS的BRCA和LS突变的个体提供支持。
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