Traino Heather M, Nonterah Camilla W, Gupta Gaurav, Mincemoyer Jodi
Department of Social and Behavioral Sciences, Temple University, Philadelphia, PA, USA
Department of Psychology, Virginia Commonwealth University (VCU), Richmond, VA, USA.
Prog Transplant. 2016 Mar;26(1):47-54. doi: 10.1177/1526924816633943.
Past research suggests the information exchanged from transplant centers to potential living kidney donors is, in many cases, suboptimal. The purpose of this study was to assess donors' perceptions of the information provided while considering living donation.
Semistructured telephone interviews conducted with 81 past living donors seen at 1 mid-Atlantic transplant center assessed the extent to which living kidney donors deemed Centers for Medicare and Medicaid Services (CMS)-mandated information useful to making a decision about donation and to which more information was or would have been desired before donating. Understanding of and satisfaction with the information was also assessed.
Participants were primarily white (67.9%), females (67.9%), with an average age of 57.8 years. Perceived usefulness ranged from a mean of 3.1 for the confidentiality of the transplant center's communication to 4.1 for postoperative care and short-term medical risks of donation. Donors of minority descent as well as those with more education and less income found the information provided most useful. Few donors desired additional information about the right to opt out of (8.6%) or decline (13.6%) donation; however, most wanted more information regarding the risk of being refused health, disability and/or life insurance after donating (77.8%), and insurance coverage for future health problems (66.7%).
This study revealed limited usefulness of certain CMS-mandated topics and a desire for additional information about donation. Efforts to standardize the informed consent process should incorporate donors' perspectives as to the specific topics, quantity of information, and the mode of communication found most useful when considering living donation.
过去的研究表明，在许多情况下，移植中心与潜在的活体肾捐赠者之间交流的信息并不理想。本研究的目的是评估捐赠者在考虑活体捐赠时对所提供信息的看法。
对在大西洋中部一个移植中心接受过治疗的81位既往活体捐赠者进行了半结构化电话访谈，评估了活体肾捐赠者认为医疗保险和医疗补助服务中心（CMS）规定的信息对做出捐赠决定的有用程度，以及在捐赠前还需要或希望获得哪些更多信息。同时还评估了对这些信息的理解和满意度。
参与者主要为白人（67.9%）、女性（67.9%），平均年龄57.8岁。感知有用性的评分范围从移植中心沟通保密性的平均3.1分到术后护理和捐赠短期医疗风险的4.1分。少数族裔捐赠者以及受教育程度较高、收入较低的捐赠者认为所提供的信息最有用。很少有捐赠者希望获得更多关于退出（8.6%）或拒绝（13.6%）捐赠权利的信息；然而，大多数人希望获得更多关于捐赠后被拒绝健康、残疾和/或人寿保险风险的信息（77.8%），以及未来健康问题的保险覆盖范围信息（66.7%）。
本研究揭示了某些CMS规定主题的有用性有限，以及捐赠者对更多捐赠信息的需求。标准化知情同意程序的努力应纳入捐赠者对于在考虑活体捐赠时最有用的具体主题、信息量和沟通方式的观点。
