Winterbottom Anna, Bekker Hilary L, Conner Mark, Mooney Andrew
Senior Research Fellow, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Health Expect. 2014 Oct;17(5):710-23. doi: 10.1111/j.1369-7625.2012.00798.x. Epub 2012 Jul 2.
Patients with chronic kidney disease (CKD) are encouraged to make an informed decision about dialysis. Survival rates for dialysis are equivalent yet there is wide variation in peritoneal dialysis uptake in the adult UK population. It is unclear how much is attributable to variations in patients' preferences. Kidney function usually declines over months and years; few studies have addressed how a chronic illness context affects choice. This study describes patients' decision making about dialysis and understands how the experience of CKD is associated with treatment choice.
Survey employing interview methods explored 20 patients' views and experiences of making their dialysis choice. Data were analysed using thematic framework analysis to provide descriptive accounts of how patients experienced their illness and made treatment decisions.
Patients talked about challenges of living with CKD. Patients were provided with lots of information about treatment options in different formats. Patients did not distinguish between different types of dialysis and/or have an in-depth knowledge about options. Patients did not talk about dialysis options as a choice but rather as a treatment they were going to have.
Most patients perceived their choice as between 'dialysis' and 'no dialysis'. They did not perceive themselves to be making an active choice. Possibly, patients feel they do not need to engage with the decision until symptomatic. Despite lots of patient information, there were more opportunities to encounter positive information about haemodialysis. A more proactive approach is required to enable patients to engage fully with the dialysis treatment options.
鼓励慢性肾脏病(CKD)患者对透析做出明智的决定。透析的生存率相当,但英国成年人群体中腹膜透析的接受率差异很大。尚不清楚有多少可归因于患者偏好的差异。肾功能通常会在数月乃至数年中逐渐下降;很少有研究探讨慢性病背景如何影响选择。本研究描述了患者关于透析的决策过程,并了解CKD的经历如何与治疗选择相关联。
采用访谈方法进行的调查探讨了20名患者对透析选择的看法和经历。使用主题框架分析对数据进行分析,以描述患者如何体验其疾病并做出治疗决策。
患者谈到了患有CKD的挑战。患者以不同形式获得了大量关于治疗选择的信息。患者没有区分不同类型的透析和/或对各种选择没有深入了解。患者没有将透析选择视为一种选择,而是将其视为他们将要接受的一种治疗。
大多数患者认为他们的选择是在“透析”和“不透析”之间。他们不认为自己在做出积极的选择。可能是患者觉得在出现症状之前不需要参与决策。尽管有大量的患者信息,但有更多机会接触到关于血液透析的正面信息。需要采取更积极主动的方法,使患者能够充分参与透析治疗选择。