Abstract

Abstract Background and Aims It is important for people living with Chronic Kidney Disease (CKD) to develop the knowledge, skills, and confidence (patient activation) to effectively self-manage their health in partnership with their healthcare team. Resources intended to educate and support self-management should be subject to robust evaluation to provide the evidence base for clinical implementation. Trials in both research and clinical practice settings should include outcomes which are meaningful and valued by all users, but these are not known for CKD education and self-management interventions. We carried out a Delphi survey to identify the priorities valued by both CKD patients and healthcare professionals (HCPs) in the UK. Method Kidney patients and multidisciplinary kidney HCPs based in the UK were invited to complete two sequential rounds of an online Delphi survey. People with CKD and their significant others (SOs) were invited via social media, and HCPs via direct email. For Round One, participants were asked to identify in their own words the 3 potential benefits (outcomes) for CKD self-management that they personally considered to be most important. These free-text responses were collated and analysed inductively using conventional content analysis to identify dominant themes and constituent items. In Round Two, participants were asked to rate each of these items on a 9-point Likert scale from 1 (least important) to 9 (most important), and overall median ratings were calculated for each theme. Results 135 participants contributed to Round One: 47% (64) CKD patients/SOs; 51% (69) kidney HCPs; 2 individuals identified in both groups. 58% of HCPs who were invited by email agreed to take part. Round One analysis identified 28 outcome items which fell into 5 main themes: clinical; knowledge, skills, and confidence to manage own health; behaviour and self-care; psychological and social factors; healthcare usage. 69% (44) of invited CKD patients/SOs and 77% (53) HCPs took part in Round Two. Table 1 shows the median ratings for each theme. The highest-ranked overall and for both groups was “clinical”, while “healthcare usage” was ranked the lowest. Conclusion Our UK Delphi survey has identified a range of potential benefits for successful self-management in non-dialysis CKD, which were categorised into 5 main themes. Clinical outcomes such as improving blood pressure management or avoiding progression to end stage kidney disease were the top priority for both CKD patient/SO and HCP participants. Aspects of patient activation (knowledge, skills, and confidence to manage health) were also rated as important by both groups. This Delphi survey identified which benefits kidney patients and HCPs value most from effective CKD education and self-management. It is important that the views of intended users of new interventions are consulted throughout the development process to ensure that the product meets their needs and expectations. The information we present here is vital for the successful design, evaluation and implementation of interventions and support tools to educate people with CKD and enable them to improve self-management behaviours.

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