Durand Marie-Anne, Bekker Hilary L, Casula Anna, Elias Robert, Ferraro Alastair, Lloyd Amy, van der Veer Sabine N, Metcalfe Wendy, Mooney Andrew, Thomson Richard G, Tomson Charles R V
The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, Hanover, NH, USA; Department of Psychology, University of Hertfordshire, Hatfield, UK.
Leeds Institute of Health Sciences , University of Leeds , Leeds , UK.
Clin Kidney J. 2016 Apr;9(2):252-9. doi: 10.1093/ckj/sfw003. Epub 2016 Mar 5.
Shared decision making is considered an important aspect of chronic disease management. We explored the feasibility of routinely measuring kidney patients' involvement in making decisions about renal replacement therapy (RRT) in National Health Service settings.
We disseminated a 17-item paper questionnaire on involvement in decision-making among adult patients with established kidney failure who made a decision about RRT in the previous 90 days (Phase 1) and patients who had been receiving RRT for 90-180 days (Phase 2). Recruitment rates were calculated as the ratio between the number of included and expected eligible patients (I : E ratio). We assessed our sample's representativeness by comparing demographics between participants and incident patients in the UK Renal Registry.
Three hundred and five (Phase 1) and 187 (Phase 2) patients were included. For Phase 1, the I : E ratio was 0.44 (range, 0.08-2.80) compared with 0.27 (range, 0.04-1.05) in Phase 2. Study participants were more likely to be white compared with incident RRT patients (88 versus 77%; P < 0.0001). We found no difference in age, gender or social deprivation. In Phases 1 and 2, the majority reported a collaborative decision-making style (73 and 69%), and had no decisional conflict (85 and 76%); the median score for shared decision-making experience was 12.5 (Phase 1) and 10 (Phase 2) out of 20.
Our study shows the importance of assessing the feasibility of data collection in a chronic disease context prior to implementation in routine practice. Routine measurement of patient involvement in established kidney disease treatment decisions is feasible, but there are challenges in selecting the measure needed to capture experience of involvement, reducing variation in response rate by service and identifying when to capture experience in a service managing people's chronic disease over time.
共同决策被认为是慢性病管理的一个重要方面。我们探讨了在国民医疗服务体系环境中常规测量肾病患者参与肾脏替代治疗（RRT）决策的可行性。
我们发放了一份包含17个条目的纸质问卷，调查对象为在过去90天内对RRT做出决策的成年慢性肾衰竭患者（第一阶段）以及已接受RRT 90 - 180天的患者（第二阶段）。招募率计算为纳入患者数量与预期符合条件患者数量的比值（I : E比值）。我们通过比较参与者与英国肾脏登记处新发病例患者的人口统计学特征来评估样本的代表性。
纳入了305名（第一阶段）和187名（第二阶段）患者。第一阶段的I : E比值为0.44（范围为0.08 - 2.80），第二阶段为0.27（范围为0.04 - 1.05）。与新发病例的RRT患者相比，研究参与者更有可能是白人（88%对77%；P < 0.0001）。我们发现年龄、性别或社会剥夺方面没有差异。在第一阶段和第二阶段，大多数患者报告采用协作式决策方式（分别为73%和69%），并且没有决策冲突（分别为85%和76%）；共同决策经验的中位数得分在20分制中第一阶段为12.5分，第二阶段为10分。
我们的研究表明在常规实践中实施之前，在慢性病背景下评估数据收集可行性的重要性。常规测量患者参与慢性肾病治疗决策的情况是可行的，但在选择用于捕捉参与体验的测量方法、减少不同服务间的应答率差异以及确定在一个长期管理人们慢性病的服务中何时捕捉体验方面存在挑战。
