Identifying Research Priorities in CKD: Workshop with Patients, Caregivers, and Health Professionals

Background: Involving all stakeholders, especially patients and caregivers in health research priority settings ensures limited health resources are directed towards areas that matter most to end-users, which can improve the relevance, quality, outcomes assessments, and implementation of research. Our aim was to identify the shared research priorities for chronic kidney disease (CKD) among key stakeholders including patients, caregivers, clinicians/researchers/policy makers and research funders in Australia and New Zealand. Methods: The prioritisation process was adapted from the James Lind Alliance Priority Setting Partnership methodology. The facilitators interview guide for the workshop was informed by a systematic review of prioritisation in CKD and a pre-workshop survey that included a ranking exercise and ability to raise new research questions. A 4-hour workshop was held in-person (Sydney, Adelaide, Brisbane) and by videoconference. Participants ranked the top 5 across categories including non–dialysis-dependent CKD, peritoneal dialysis (PD), Hemodialysis (HD), and transplantation (Tx). They then ranked the top 10 research questions across all categories. Results: In total, 101 (patients/caregivers n=37, clinicians n=48, policy makers n=16) participated in the workshop. According to the ranking exercises, the top 5 overall priority research questions across all CKD stages, and in order of priority included: 1) Health promotion programs for the community to prevent CKD, 2) Effectiveness of lifestyle programs to prevent decline of Kidney function in CKD, 3) Interventions that maximise patient graft survival in transplantation, 4) Strategies to improve equity of access to kidney transplantation and 5) New technologies to improve the donor organ supply for transplantation. Conclusion: The top research priorities related to prevention of CKD in the community, and how effective are lifestyle programs for prevention of deterioration of early CKD. This will inform the shared research agenda for patients, caregivers, researchers, health professionals, policy makers and funding agencies in CKD.