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Factors associated with decision-making on prophylactic hysterectomy and attitudes towards gynecological surveillance among women with Lynch syndrome (LS): a descriptive study.
Familial Cancer ( IF 1.8 ) Pub Date : 2020-01-29 , DOI: 10.1007/s10689-020-00158-5
Mari H Kalamo 1 , J U Mäenpää 1, 2 , T T Seppälä 3 , J P Mecklin 4, 5 , H Huhtala 2 , K Sorvettula 2 , K Pylvänäinen 6 , S Staff 1, 2
Affiliation  

To prevent endometrial carcinoma in Lynch syndrome (LS), regular gynecological surveillance visits and prophylactic surgery are recommended. Previous data have shown that prophylactic hysterectomy is an effective means of cancer prevention, while the advantages and disadvantages of surveillance are somewhat unclear. We aimed to evaluate female LS carriers’ attitudes towards regular gynecological surveillance and factors influencing their decision-making on prophylactic surgery that have not been well documented. Pain experienced during endometrial biopsies was also evaluated. Postal questionnaires were sent to LS carriers undergoing regular gynecological surveillance. Questionnaires were sent to 112 women with LS, of whom 76 responded (68%). Forty-two (55%) had undergone prophylactic hysterectomy by the time of the study. The majority of responders (64/76; 84.2%) considered surveillance appointments beneficial. Pain level during endometrial biopsy was not associated with the decision to undergo prophylactic surgery. The level of satisfaction the women had with the information and advice provided during surveillance was significantly associated with the history of prophylactic hysterectomy (satisfaction rate of 73.2% versus 31.8% of nonoperated women, p = 0.003). The women who had undergone prophylactic surgery were older than the nonoperated women both at mutation testing (median of 42.3 years versus 31.6 years, p < 0.001) and at the time of the study (median of 56.9 years versus 46.0 years, respectively, p < 0.001). Women with LS pathogenic variants have positive experiences with gynecological surveillance visits, and their perception of the quality of the information and advice obtained plays an important role in their decision-making concerning prophylactic surgery.

中文翻译:

预防性子宫切除术决策相关因素和对Lynch综合征(LS)妇女的妇科监测态度:一项描述性研究。

为了预防Lynch综合征(LS)的子宫内膜癌,建议定期进行妇科监护访视和预防性手术。以前的数据表明,预防性子宫切除术是预防癌症的有效手段,而监视的优缺点尚不清楚。我们旨在评估女性LS携带者对常规妇科监测的态度以及影响其预防性手术决策的因素,这些文献尚未得到充分记录。还评估了子宫内膜活检过程中经历的疼痛。将邮政调查表发送给接受定期妇科监护的LS携带者。向112名患有LS的妇女发送了问卷,其中76名作出了回应(68%)。截至研究时,四十二(55%)人接受了预防性子宫切除术。大多数响应者(64/76; 84.2%)认为监视任命是有益的。子宫内膜活检过程中的疼痛水平与进行预防性手术的决定无关。妇女对监测过程中提供的信息和建议的满意程度与预防性子宫切除术的历史显着相关(满意度为73.2%,非手术妇女为31.8%,p  = 0.003)。谁经历了预防性手术的妇女比非手术的女性都在突变检测(的42.3年中位数与31.6年,老年p  <0.001),并在研究的时间(相对于46.0年,分别56.9年平均p  < 0.001)。患有LS致病变异的妇女在妇科监护访视方面具有积极的经验,她们对所获得信息和建议的质量的了解在其有关预防性手术的决策中起着重要作用。
更新日期:2020-01-29
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