Winterbottom Anna, Mooney Andrew, Russon Lynne, Hipkiss Vicki, Ziegler Lucy, Finderup Jeanette, Williams Richard, Bekker Hilary L
Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, United Kingdom.
Adult Renal Services, St James University Hospital, Leeds, United Kingdom.
Kidney Med. 2025 Feb 24;7(5):100984. doi: 10.1016/j.xkme.2025.100984. eCollection 2025 May.
RATIONALE & OBJECTIVE: For older adults with kidney failure, conservative kidney management can provide better quality of life, less treatment burden, and for some, the same length of life benefit. Patient decision making around kidney treatments is complex and emotionally demanding for both patients and health professionals. Resources provided by kidney units about dialysis and conservative kidney management options are frequently not sufficient to support people making reasoned decisions between options. This article describes 2 studies underpinning the development of the Yorkshire Dialysis and Conservative Care Decision Aid.
Study 1: cross-sectional study using in-depth interview methods; study 2: user-centered iterative design with multiple stakeholders.
SETTING & PARTICIPANTS: Older adults with kidney failure and health professionals from 3 kidney units in the North of England. Resource development included input from co-applicants, patient and public involvement team, multidisciplinary health professionals, and academics in the United Kingdom and Denmark.
Thematic analysis was used to analyze the data.
Three themes synthesized stakeholder responses: transition to a conservative kidney management pathway, clinical and social indicators for changing kidney care management, and preparation for end-of-life care. The findings informed the patient decision aid content, which was structured with reference to international guidance. There were 16 iterations of the patient decision aid addressing multiple-stakeholder evaluations. People with kidney failure, family members, and kidney professionals agreed the final resource provides accurate, balanced, accessible, and relevant information supporting engagement with the decision between conservative kidney management care and dialysis within the kidney care pathway in the context of their everyday life.
There was a lack of ethnic diversity in the sample.
People with kidney failure must choose between dialysis and conservative kidney management when planning their kidney care. Development of this resource used evidence of professionals' clinical reasoning about kidney disease management. Providing details of the research underpinning patient decision aid development demonstrates why the resource can enhance health literacy and supports shared decision making conversations with people making these difficult decisions.
对于老年肾衰竭患者，保守肾脏管理可提供更好的生活质量、减轻治疗负担，且对部分患者而言，能带来相同的寿命获益。患者围绕肾脏治疗的决策过程复杂，对患者和医疗专业人员来说都情感上要求很高。肾脏科室提供的有关透析和保守肾脏管理选项的资源往往不足以支持人们在不同选项之间做出合理决策。本文介绍了两项为约克郡透析与保守治疗决策辅助工具的开发提供支撑的研究。
研究1：采用深度访谈方法的横断面研究；研究2：多利益相关者参与的以用户为中心的迭代设计。
来自英格兰北部3个肾脏科室的老年肾衰竭患者和医疗专业人员。资源开发纳入了共同申请人、患者及公众参与团队、多学科医疗专业人员以及英国和丹麦学者的意见。
采用主题分析法对数据进行分析。
三个主题综合了利益相关者的反馈：向保守肾脏管理路径的转变、改变肾脏护理管理的临床和社会指标以及临终护理准备。这些发现为患者决策辅助工具的内容提供了依据，该工具参考国际指南进行构建。患者决策辅助工具进行了16次迭代以应对多利益相关者的评估。肾衰竭患者、家庭成员和肾脏专业人员一致认为，最终资源提供了准确、平衡、易懂且相关的信息，有助于在日常生活背景下，就肾脏护理路径中保守肾脏管理护理和透析之间的决策进行参与。
样本中缺乏种族多样性。
肾衰竭患者在规划肾脏护理时必须在透析和保守肾脏管理之间做出选择。该资源的开发利用了专业人员对肾脏疾病管理的临床推理证据。详细介绍患者决策辅助工具开发背后的研究，说明了该资源为何能够提高健康素养，并支持与面临这些艰难决策的人们进行共同决策对话。
