Integrating Clinical Reasoning Into a Patient Decision Aid for People Making Conservative Kidney Management and Dialysis Decisions: A User-Centered Intervention Development Design

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 paper describes two studies underpinning the development of ‘The Yorkshire Dialysis and Conservative Care Decision Aid’. Study Design Study 1) cross-sectional study using in-depth interview methods 2) user-centered iterative design with multiple stakeholders. Setting & Participants Older adults with kidney failure and health professionals from three 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 UK and Denmark. Analytical Approach Thematic analysis was used to analyse the data. Results Three themes synthesised stakeholder responses: transition to a conservative kidney management pathway; clinical and social indicators for changing kidney care management; preparation for end-of-life care. Findings informed the patient decision aid content, 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. Limitations There was lack of ethnic diversity in the sample. Conclusions This resource utilises evidence of professionals’ clinical reasoning about kidney disease management, and people with kidney failure experience of making decisions between dialysis and conservative kidney management when planning their kidney care. Providing details of the research underpinning patient decision aid development demonstrates why the resources is able to enhance the health literacy, and support shared decision making conversations, of people making these difficult decisions.