Husain Syed Ali, Rubenstein Jordan A, Ramsawak Seshma, Huml Anne M, Yu Miko E, Maclay Lindsey M, Schold Jesse D, Mohan Sumit
Division of Nephrology, Department of Medicine, Columbia University Medical Center, New York, New York, USA.
Columbia University Renal Epidemiology Group, New York, New York, USA.
Kidney Int Rep. 2025 Jan 16;10(4):1122-1130. doi: 10.1016/j.ekir.2025.01.013. eCollection 2025 Apr.
In the United States (US), deceased donor kidney offers are most commonly declined by transplant centers on behalf of waitlisted candidates, without notifying them. We sought to understand patient and provider attitudes toward patient-facing organ offer reporting.
We conducted a cross-sectional survey of patients, nephrologists, and nephrology social workers on the National Kidney Foundation mailing list and the medical and surgical directors of US kidney transplant programs.
Among 755 patient respondents, 64% wanted to receive organ offer reports. Patients who wanted organ offer information were younger, more likely to be of a non-White race, and more likely to be on dialysis or on the waiting list. Of the patients, 87% reported that centers should be required to tell candidates about the offers they receive, and 62% reported that candidates should be informed after every offer. Among the 107 nephrology respondents, 73% reported that candidates should be provided with organ offer information and 88% reported that they would want to receive a copy of their patients' offer reports. Among 26 transplant program director respondents, 77% reported that candidates should not be notified of offers declined on their behalf. If organ offer reports were required, most program director respondents believed that they should include the reasons offers were declined and should not include offers for kidneys that were ultimately discarded.
Most patients and nephrology providers, but only a minority of transplant program directors, supported the sharing of patient-facing information about individual deceased donor kidney offers that were declined on candidates' behalf.
在美国，移植中心通常会代表等待名单上的候选人拒绝已故捐赠者的肾脏捐赠提议，且不通知他们。我们试图了解患者和医疗服务提供者对面向患者的器官捐赠提议报告的态度。
我们对国家肾脏基金会邮件列表上的患者、肾病学家和肾脏科社会工作者以及美国肾脏移植项目的内科和外科主任进行了横断面调查。
在755名患者受访者中，64%希望收到器官捐赠提议报告。希望获得器官捐赠信息的患者更年轻，更有可能是非白人种族，更有可能正在接受透析或在等待名单上。在这些患者中，87%报告称应要求中心告知候选人他们收到的提议，62%报告称每次提议后都应通知候选人。在107名肾病学受访者中，73%报告称应向候选人提供器官捐赠提议信息，88%报告称他们希望收到其患者的捐赠提议报告副本。在26名移植项目主任受访者中，77%报告称不应将代表候选人拒绝的提议通知他们。如果需要器官捐赠提议报告，大多数项目主任受访者认为报告应包括提议被拒绝的原因，且不应包括最终被丢弃的肾脏的提议。
大多数患者和肾病学提供者，但只有少数移植项目主任支持分享关于代表候选人拒绝的个别已故捐赠者肾脏提议的面向患者的信息。
