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Perspectives of 281 patients with Mayer-Rokitansky-Küster-Hauser Syndrome on uterine transplantation
Fertility and Sterility ( IF 6.6 ) Pub Date : 2021-01-01 , DOI: 10.1016/j.fertnstert.2020.10.044
Nicole Fischer 1 , Helen Xun 2 , Amy Lossie 3 , Darya Fadavi 2 , Halley Darrach 2 , Pooja Yesantharao 2 , Franca Kraenzlin 2 , Bhuchitra Singh 1 , Justin M Sacks 4 , James H Segars 1
Affiliation  

OBJECTIVES To investigate the personal, ethical, and financial perspectives of individuals with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), a congenital uterine factor infertility condition, regarding uterine transplantation (UTx). DESIGN Cross-sectional, quantitative survey. SETTING A 60-item anonymous electronic questionnaire was disseminated via social media sites. PATIENTS International members of the Beautiful You MRKH Foundation. INTERVENTIONS None. MAIN OUTCOME MEASURES The survey contained UTx educational materials followed by questions assessing participants' baseline knowledge, global perceptions, financial concerns, and ethical considerations regarding UTx. RESULTS We received 281 responses, with a mean participant age of 28.2 ± 9.8 years. After reviewing the education material, most participants considered receiving a UTx (73%), believed that it should be an option for all women with uterine factor infertility (86%), and believed that it should be covered by health insurance (78%). Respondents perceived the benefits of the procedure to outweigh the risks (67%) and considered it to be an ethical procedure (82%). Almost one-half (49%) were willing to spend more than $10,000 out of pocket to receive the procedure. When asked to rank the risk of UTx to self, donor, and fetus in order of personal importance, 21% ranked their own safety last. CONCLUSION There is a profound desire in the MRKH community for UTx to become more widely available and affordable. MRKH patients may represent a vulnerable population requiring special considerations for informed consent and rigorous evaluation for UTx. Providers caring for MRKH patients should be prepared to provide education about UTx and to thoughtfully engage with news and media outlets to communicate evidence-supported information.

中文翻译:

Mayer-Rokitansky-Küster-Hauser综合征281例子宫移植观察

目的 调查 Mayer-Rokitansky-Küster-Hauser 综合征 (MRKH)(一种先天性子宫因素不孕症)患者在子宫移植 (UTx) 方面的个人、伦理和财务观点。设计 横断面、定量调查。设置 60 项匿名电子问卷通过社交媒体网站发布。美丽的你 MRKH 基金会的患者国际成员。干预 无。主要结果指标 该调查包含 UTx 教育材料,然后是评估参与者关于 UTx 的基线知识、全球认知、财务问题和道德考虑的问题。结果 我们收到了 281 份回复,参与者的平均年龄为 28.2 ± 9.8 岁。在查看了教育材料后,大多数参与者考虑接受 UTx (73%),认为它应该是所有患有子宫因素不孕症的女性的一个选择(86%),并认为它应该被医疗保险覆盖(78%)。受访者认为该程序的好处大于风险 (67%) 并认为它是一种合乎道德的程序 (82%)。近一半 (49%) 的人愿意自掏腰包花费超过 10,000 美元来接受手术。当被要求按照个人重要性对自己、捐赠者和胎儿的 UTx 风险进行排序时,21% 的人将自己的安全排在最后。结论 MRKH 社区迫切希望 UTx 变得更广泛可用且价格合理。MRKH 患者可能代表需要特别考虑知情同意和对 UTx 的严格评估的弱势群体。
更新日期:2021-01-01
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