Gibbons Andrea, Cinnirella Marco, Bayfield Janet, Wu Diana, Draper Heather, Johnson Rachel J, Tomson Charles R V, Forsythe John L R, Metcalfe Wendy, Fogarty Damian, Roderick Paul, Ravanan Rommel, Oniscu Gabriel C, Watson Christopher J E, Bradley J Andrew, Bradley Clare
Health Psychology Research Unit, Royal Holloway University of London, Egham, UK.
Department of Psychology, Royal Holloway University of London, Egham, UK.
BMJ Open. 2017 Jan 27;7(1):e013896. doi: 10.1136/bmjopen-2016-013896.
To explore how patients who are wait-listed for or who have received a kidney transplant understand the current UK kidney allocation system, and their views on ways to allocate kidneys in the future.
Qualitative study using semistructured interviews and thematic analysis based on a pragmatic approach.
10 deceased-donor kidney transplant recipients, 10 live-donor kidney transplant recipients, 12 participants currently wait-listed for a kidney transplant and 4 participants whose kidney transplant failed.
Semistructured telephone interviews conducted with participants in their own homes across the UK.
Three main themes were identified: uncertainty of knowledge of the allocation scheme; evaluation of the system and participant suggestions for future allocation schemes. Most participants identified human leucocyte anitgen matching as a factor in determining kidney allocation, but were often uncertain of the accuracy of their knowledge. In the absence of information that would allow a full assessment, the majority of participants consider that the current system is effective. A minority of participants were concerned about the perceived lack of transparency of the general decision-making processes within the scheme. Most participants felt that people who are younger and those better matched to the donor kidney should be prioritised for kidney allocation, but in contrast to the current scheme, less priority was considered appropriate for longer waiting patients. Some non-medical themes were also discussed, such as whether parents of dependent children should be prioritised for allocation, and whether patients with substance abuse problems be deprioritised.
Our participants held differing views about the most important factors for kidney allocation, some of which were in contrast to the current scheme. Patient participation in reviewing future allocation policies will provide insight as to what is considered acceptable to patients and inform healthcare staff of the kinds of information patients would find most useful.
探讨等待肾移植或已接受肾移植的患者如何理解当前英国的肾脏分配系统，以及他们对未来肾脏分配方式的看法。
采用基于实用方法的半结构化访谈和主题分析的定性研究。
10名 deceased-donor 肾移植受者、10名活体供肾肾移植受者、12名目前正在等待肾移植的参与者以及4名肾移植失败的参与者。
在英国各地参与者家中进行半结构化电话访谈。
确定了三个主要主题：分配方案知识的不确定性；对该系统的评估以及参与者对未来分配方案的建议。大多数参与者将人类白细胞抗原匹配视为决定肾脏分配的一个因素，但他们对自己知识的准确性往往不确定。在缺乏能够进行全面评估的信息的情况下，大多数参与者认为当前系统是有效的。少数参与者担心该方案中总体决策过程缺乏透明度。大多数参与者认为，年龄较小且与供体肾脏匹配度更高的人在肾脏分配中应被优先考虑，但与当前方案不同的是，对于等待时间更长的患者，应给予较低的优先级。还讨论了一些非医学主题，例如受抚养子女的父母是否应在分配中被优先考虑，以及有药物滥用问题的患者是否应被降低优先级。
我们的参与者对肾脏分配的最重要因素持有不同观点，其中一些与当前方案不同。患者参与审查未来的分配政策将有助于了解患者认为可接受的内容，并让医护人员了解患者认为最有用的信息类型。
