What I wish I'd known before surgery: BRCA carriers' perspectives after bilateral salipingo-oophorectomy
What I wish I'd known before surgery: BRCA carriers' perspectives after bilateral salipingo-oophorectomy
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DOI：
10.1007/s10689-010-9384-z
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发表时间：
2011-03-01
期刊：
影响因子：
2.2
通讯作者：
Matloff, Ellen T.
中科院分区：
文献类型：
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作者：
Bonadies, Danielle Campfield;Moyer, Anne;Matloff, Ellen T.
我们回顾性研究了有预防性双侧卵巢切除术 (PBSO) 病史的 BRCA 携带者：(1) 他们的术后症状，(2) 他们与医疗保健提供者就可能的手术副作用进行术前对话的回忆，以及 (3) 他们认为在手术前获得哪些信息会有所帮助。通过耶鲁大学癌症遗传咨询项目接受 PBSO 治疗的女性 BRCA 携带者被邀请参加一份调查问卷，该调查问卷评估了她们对术前收到的信息的回忆，并与她们术后的知识和与更年期、认知变化、生育能力丧失、癌症风险、骨质疏松症、心脏病、血管舒缩症状、泌尿生殖症状、性行为和身体形象相关的症状进行比较。调查问卷还收集了参与者关于他们进行 PBSO 的决定、他们希望在手术前了解什么、对其他考虑进行此项手术的 BRCA 携带者的建议以及对为女性提供有关 PBSO 咨询的医疗保健提供者的建议。 290 名女性 BRCA 携带者受邀参加，其中 113 名（39.0%）表示有兴趣。其中，99 人 (87.6%) 返回了调查问卷，98 人 (86.7%) 的回复纳入了分析。 PBSO 的平均年龄为 45.5 岁（范围：32-63 岁）。五种最常见的“频繁”或“非常频繁”的术后症状是：阴道干燥（52.1%）、性兴趣改变（50.0%）、睡眠障碍（46.7%）、性生活改变（43.9）和潮热（42.9%）。大多数女性会发现了解更多关于该手术对其性生活的影响（59.2%）、性咨询的可用性（57.1%）以及冠心病风险（57.1%）的信息是有帮助的。这项研究表明，虽然医疗保健提供者正在讨论 PBSO 的某些副作用，但接受该手术的女性还有其他需要解决的问题。该信息深入了解考虑 PBSO 的 BRCA 携带者的信息需求。
We retrospectively studied BRCA carriers with a history of prophylactic bilateral salingo-oophorectomy (PBSO) regarding: (1) their post-operative symptoms, (2) their recollection of pre-operative conversations with their health care providers regarding possible surgical side-effects and (3) what information they would have found helpful to have before surgery. Female BRCA carriers seen through the Yale Cancer Genetic Counseling Program who had PBSO were invited to participate in a questionnaire that assessed their recall of information they received pre-operatively compared with their post-operative knowledge and symptoms related to menopause, cognitive changes, loss of fertility, cancer risks, osteoporosis, heart disease, vasomotor symptoms, urogenital symptoms, sexuality and body image. The questionnaire also elicited written feedback from participants regarding their decision to have PBSO, what they wished they had known before surgery, advice for other BRCA carriers considering this surgery and advice for health care providers who counsel women about PBSO. Two hundred and ninety female BRCA carriers were invited to participate and 113 (39.0%) indicated they were interested. Of those, 99 (87.6%) returned their questionnaire and 98 (86.7%) responses were included in the analysis. The mean age at PBSO was 45.5 years (range: 32-63 years). The five most common "frequent" or "very frequent" post-surgical symptoms were: vaginal dryness (52.1%), changes in interest in sex (50.0%), sleep disturbances (46.7%), changes in sex life (43.9) and hot flashes (42.9%). The majority of women would have found it helpful to have more information regarding the impact of this surgery on their sex life (59.2%), the availability of sex counseling (57.1%) and the risk of coronary heart disease (57.1%). This study illustrates that while health care providers are discussing selected side effects of PBSO, women undergoing this surgery have other concerns that should be addressed. This information provides insights into the informational needs of BRCA carriers considering PBSO.