Bartling Tim, Oedingen Carina, Kohlmann Thomas, Schrem Harald, Krauth Christian
Institute of Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Hannover, Germany.
Center for Health Economics Research Hannover (CHERH), Hannover, Germany.
Patient Prefer Adherence. 2022 Aug 30;16:2375-2385. doi: 10.2147/PPA.S372603. eCollection 2022.
The gap between the supply and demand for deceased donor organs is increasing worldwide, while patients on waiting lists for organ transplantation die. This situation requires ethical donor organ allocation rules. The patients' perspective on donor organ allocation rules offers a highly relevant and unique perspective that may differ from the perspectives of physicians and the general public.
Semi-structured telephone interviews were conducted with the regional group coordinators of the federal self-help organization for organ transplanted patients and their relatives in Germany in early 2021. Twelve interviews were conducted with patients and relatives of transplantation patients who received transplants for the affected organs including the lungs, heart, kidney, and liver. Transcripts were analyzed using the deductive framework method which was based on an earlier study. All criteria were reported following the COREQ statement.
Participants emphasized aspects of "medical urgency" and "effectiveness/benefit" of transplantation and associated trade-offs as well as the recipient's responsibility for organ failure ("own fault"), the appreciation for the gifted graft and the patient's capability of taking care of it ("appreciation/responsibility"). Patients acknowledged that urgent patients should be prioritized and they showed a clear preference toward allocation rules that strive to maximize both the life years and quality of life gained by transplantation.
The patients' perspective is unique in that patients agree on certain rules for allocation and share many preferences, but also have a hard time finding clear cutoff points when considering selecting a participant for allocation. Patient representatives should therefore be consulted in the debate on donor organ allocation rules.
在全球范围内，已故捐赠者器官的供需差距正在扩大，而等待器官移植的患者却在死亡。这种情况需要符合伦理的捐赠器官分配规则。患者对捐赠器官分配规则的看法提供了一个高度相关且独特的视角，可能与医生和公众的视角不同。
2021年初，对德国联邦器官移植患者自助组织及其亲属的地区小组协调员进行了半结构化电话访谈。对接受包括肺、心脏、肾脏和肝脏等受影响器官移植的患者及其亲属进行了12次访谈。使用基于早期研究的演绎框架法对访谈记录进行了分析。所有标准均按照COREQ声明进行报告。
参与者强调了移植的“医疗紧迫性”和“有效性/益处”以及相关的权衡取舍，以及接受者对器官衰竭的责任（“自身过错”）、对捐赠器官的感激之情以及患者照顾它的能力（“感激/责任”）。患者承认应优先考虑紧急患者，并且他们明确倾向于那些努力使移植所获得的生命年数和生活质量最大化的分配规则。
患者的观点具有独特性，即患者在某些分配规则上达成一致并分享许多偏好，但在考虑选择分配对象时也难以找到明确的界限。因此，在关于捐赠器官分配规则的辩论中应征求患者代表的意见。
