Background: Research aims to improve treatment and health outcomes for patients. Yet, research priorities are usually determined by clinicians, academics and funders; and there is little transparency in the prioritisation process.
Methods: A national priority setting partnership workshop was convened on the 7th February 2014. The 58 participants included patients with CKD (n = 23), caregivers (n = 7), nephrologists/surgeon (n = 16), nurses (n = 8), and allied health professionals and researchers (n = 4). In facilitated groups of 8–10, participants generated and “voted” on research questions in four CKD stages: early stage (non‐dialysis‐dependent) CKD, peritoneal dialysis, haemodialysis, and kidney transplantation. Votes were summed to identify the top 20 questions across all CKD stages which were then individually ranked by the participants.
Results: Eighty‐three research questions were formulated. The top five research questions were: (1) How effective are lifestyle programs such as diet, exercise and smoking cessation for preventing deterioration in kidney function in patients with early CKD? (2) What interventions can improve long‐term post‐transplant outcomes (drugs, lifestyle)? (3) What strategies will improve donor family consent to deceased donation taking different cultural groups into account? (4) What strategies help patients maintain work while on HD? (5) How can we improve and individualise drug therapy in terms of better management of side effects?
Conclusions: Priority questions were focussed on prevention, lifestyle, quality of life, and long‐term impact. Priority setting partnerships provide an opportunity for wide stakeholder engagement to explore and identify research priorities. The prioritised research questions can inform patient/consumer organisations, researchers, policy makers, and funding agencies in developing a CKD research agenda that is relevant to patients, caregivers, and health professionals.