Impact of education on APOL1 testing attitudes among prospective living kidney donors.

Impact of education on APOL1 testing attitudes among prospective living kidney donors.
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DOI:
10.1111/ctr.14516
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发表时间:
2022-01
影响因子:
2.1
通讯作者:
--
中科院分区:
医学3区
文献类型:
--
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目前尚不清楚如何提供潜在的活体捐赠者有关APOL1的信息,包括测试的好处和缺点,影响他们的测试愿望。在这项研究中,我们调查了102名参与者,他们自报非洲血统和肾脏疾病家族史阳性,从我们的肾脏病候诊室招募。我们评估了对APOL1测试的看法之前和之后介绍了一组潜在的好处和测试的缺点,并量化了自我报告的影响水平的个人利益和缺点对参与者的愿望进行测试,在拟议的背景下的活体捐赠。大多数参与者(92%)知道器官捐赠,超过一半(56%)考虑过活体捐赠。虽然我们发现,在研究结束时,在介绍APOL 1检测的潜在益处和缺点后,反应没有显著变化,但在所有参与者中,“意识到直系亲属中肾脏疾病的潜在风险”是平均影响最大的益处(3.3±1.4),而平均影响最大的缺点(2.9±1.5)是“一些移植中心可能不允许您捐赠给亲人”。这项研究提供了对未来活体捐赠者优先事项的见解,并建议关注信息如何影响家庭成员可能会强烈影响测试的愿望。它还强调了需要更多的社区参与,以更深入地了解影响APOL1测试决策的优先事项。
It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants’ desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, “becoming aware of the potential risk of kidney disease among your immediate family” was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was “some transplant centers may not allow you to donate to a loved one”. This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.
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