Identifying Key Outcomes for Optimal CKD Management: A UK-Based Delphi Study

Background: Effective self-management is crucial for people with chronic kidney disease (CKD). Robust evaluation of resources to support self-management in research and clinical practice settings should be based on outcomes that are meaningful and valued by stakeholders. This study aimed to establish stakeholder consensus on priority outcomes for CKD self-management. Methods: A 3-round online Delphi survey was conducted. Invited participants included CKD patients, relatives, carers, healthcare professionals and policy-makers. Round 1: Participants were asked to describe in free text their top three most important outcomes for non-dialysis CKD self-management. Responses were analysed using conventional content analysis to generate items for consideration by participants in subsequent rounds. Round 2: Participants rated each item on a 9-point Likert scale. Items scoring ≥70% at 7-9 (critically important) progressed to Round 3. Round 3: Participants ranked items in order of importance to reach a consensus. A ranking-weighted score was used to identify highly ranked outcomes Results: 64 patients/relatives and 69 kidney professionals contributed to Round 1. 28 outcome items were identified and categorised into 5 themes: ‘Clinical’, ‘Behaviour and self-care’, ‘Knowledge, skills and confidence to manage own health’, ‘Healthcare usage’ and ‘Psychological and social factors’. In Round 2, 44 patients/relatives and 53 kidney professionals participated. Three items did not meet the progression criteria and were subsequently removed (2 items from ‘Healthcare usage’ category and 1 from ‘Psychological and social factors’). In Round 3, 25 patients/relatives and 37 kidney professionals participated. The top three ranked items were: 1) Prevent or slow the decline of kidney function; 2) Feeling more in control of own health and kidney disease, feeling empowered and independent; and 3) Improve life expectancy. Conclusion: All the items identified as the top three priority outcomes of self-management by patient and professional participants fell into the "Clinical" or "Knowledge, Skills and Confidence" themes. Identification of these key outcomes will be important for future resource design, clinical trials, healthcare service assessment, and strategies to support the commissioning and uptake of self-management resources.