Mr Dale Coghlan1, Professor Allison Jaure2,3, Professor Jonathan Craig1,3, Professor Germaine Wong2,3, Dr Nicole Scholes-Robertson2,3, on behalf of the BEAT-CKD Investigators
1Flinders University, Adelaide, Australia, 2Sydney School of Public Health, The University of Sydney, Sydney, Australia, 3Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Biography:
Dale is responsible for developing and coordinating a patient involvement framework within the BEAT-CKD network, ensuring the integration of perspectives and experiences of individuals living with kidney disease in all research activities. He provides administrative and operational support to project teams, overseeing the implementation and delivery of activities to achieve established milestones and deliverables.
Aim:
To evaluate approaches to research prioritisation in kidney disease and describe research priorities identified by patients, caregivers, clinicians, and policymakers
Background:
There are increasing efforts to set research priorities in kidney disease, particularly with the involvement of patients and caregivers, to help ensure that research addresses relevant and meaningful topics and questions. This study aims to evaluate approaches to research prioritisation in kidney disease and describe the research priorities of patients, their caregivers, healthcare providers, and policymakers.
Methods:
MEDLINE, EMBASE, PsycINFO, and CINAHL were searched up to January 2025 for studies identifying research priorities in kidney disease (including acute kidney injury (AKI), chronic kidney disease (CKD) stages 1–5, dialysis, and transplantation) of patients, caregivers, clinicians, researchers, or policymakers. We used REPRISE to assess the transparency of reporting and conducted a descriptive synthesis to analyse research priorities.
Results:
Thirty-four studies involving 3,659 participants from five countries were included. Twenty (59%) studies reported patient or caregiver involvement in priority-setting processes. Most studies used Delphi Technique, consensus panels, surveys, and/or workshops to form research priorities of which the process was described by 28 (72%) studies. The top priority research areas/topics most frequently identified included treatment-related topics such as symptom management, medications, and vascular access, secondary prevention, healthcare services, psychosocial support, and patient education. In pre-dialysis stages of CKD, there has been a shift from a biomedical focus (e.g. drug therapies, disease mechanisms) toward psychosocial and educational domains (e.g. secondary prevention, social support, patient knowledge, self-management).
Conclusion:
Involvement of patients and caregivers in research priority setting using prespecified, transparent processes is essential to support the translation of shared priorities into policy and practice in kidney disease.
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