School of Medical and Health Sciences, Bangor University, Bangor, UK
Department of Nephrology, Cardiff and Vale University Health Board, Cardiff, UK.
BMJ Open. 2021 Nov 29;11(11):e053937. doi: 10.1136/bmjopen-2021-053937.
To explore how people with chronic kidney disease who are pre-dialysis, family members and healthcare professionals together navigate common shared decision-making processes and to assess how this impacts future treatment choice.
Coproductive qualitative study, underpinned by the Making Good Decisions in Collaboration shared decision-model. Semistructured interviews with a purposive sample from February 2019 - January 2020. Interview data were analysed using framework analysis. Coproduction of logic models/roadmaps and recommendations.
Five Welsh kidney services.
95 participants (37 patients, 19 family members and 39 professionals); 44 people supported coproduction (18 patients, 8 family members and 18 professionals).
Shared decision-making was too generic and clinically focused and had little impact on people getting onto home dialysis. Preferences of where, when and how to implement shared decision-making varied widely. Apathy experienced by patients, caused by lack of symptoms, denial, social circumstances and health systems issues made future treatment discussions difficult. Families had unmet and unrecognised needs, which significantly influenced patient decisions. Protocols containing treatment hierarchies and standards were understood by professionals but not translated for patients and families. Variation in dialysis treatment was discussed to match individual lifestyles. Patients and professionals were, however, defaulting to the perceived simplest option. It was easy for patients to opt for hospital-based treatments by listing important but easily modifiable factors.
Shared decision-making processes need to be individually tailored with more attention on patients who could choose a home therapy but select a different option. There are critical points in the decision-making process where changes could benefit patients. Patients need to be better educated and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. There needs to be more awareness of the costs and benefits of the various treatment options when making decisions.
探索透析前的慢性肾脏病患者、家属和医疗保健专业人员如何共同参与常见的共同决策过程，并评估这如何影响未来的治疗选择。
以共同决策模式下的协作性决策制定为基础的合作性定性研究。2019 年 2 月至 2020 年 1 月，对来自五个威尔士肾脏服务机构的特定人群进行半结构式访谈。采用框架分析法对访谈数据进行分析。共同制定逻辑模型/路线图和建议。
五个威尔士肾脏服务机构。
95 名参与者（37 名患者、19 名家属和 39 名专业人员）；44 人支持共同决策（18 名患者、8 名家属和 18 名专业人员）。
共同决策过于笼统且以临床为重点，对人们接受家庭透析的影响很小。对在哪里、何时以及如何实施共同决策的偏好差异很大。由于缺乏症状、否认、社会环境和卫生系统问题，患者感到冷漠，这使得未来的治疗讨论变得困难。家庭的需求未得到满足且未被认识到，这对患者的决策有重大影响。专业人员理解包含治疗层次和标准的方案，但未将其翻译给患者和家属。根据个人生活方式讨论了透析治疗的变化。但是，患者和专业人员默认选择了被认为最简单的选择。患者很容易通过列出重要但易于改变的因素选择医院治疗。
共同决策过程需要根据个人情况进行定制，更多地关注那些可以选择家庭治疗但选择不同选择的患者。在决策过程中有一些关键节点，在这些节点上做出改变可能会使患者受益。需要对患者进行更好的教育，并对其先入为主的想法和误解进行温和的挑战。医疗保健专业人员需要更新他们的知识，以便提供最佳的建议和指导。在做出决策时，需要更多地了解各种治疗选择的成本和收益。
