Special Report
Research Priorities in CKD: Report of a National Workshop Conducted in Australia

https://doi.org/10.1053/j.ajkd.2015.02.341Get rights and content

Research aims to improve health outcomes for patients. However, the setting of research priorities is usually performed by clinicians, academics, and funders, with little involvement of patients or caregivers and using processes that lack transparency. A national workshop was convened in Australia to generate and prioritize research questions in chronic kidney disease (CKD) among diverse stakeholder groups. Patients with CKD (n = 23), nephrologists/surgeons (n = 16), nurses (n = 8), caregivers (n = 7), and allied health professionals and researchers (n = 4) generated and voted on intervention questions across 4 treatment categories: CKD stages 1 to 5 (non–dialysis dependent), peritoneal dialysis, hemodialysis, and kidney transplantation. The 5 highest ranking questions (in descending order) were as follows: How effective are lifestyle programs for preventing deteriorating kidney function in early CKD? What strategies will improve family consent for deceased donor kidney donation, taking different cultural groups into account? What interventions can improve long-term post-transplant outcomes? What are effective interventions for post hemodialysis fatigue? How can we improve and individualize drug therapy to control post-transplant side effects? Priority questions were focused on prevention, lifestyle, quality of life, and long-term impact. These prioritized research questions can inform funding agencies, patient/consumer organizations, policy makers, and researchers in developing a CKD research agenda that is relevant to key stakeholders.

Section snippets

Context

Australia is among the world’s 20 largest economies, with a gross domestic product of approximately US $1 trillion. In the Australian health care system, some services are funded by the government and others are funded by private health insurance. Medicare is the Australian government’s universal health insurance scheme and provides free or subsidized treatment to patients in public hospitals. Costs of dialysis and kidney transplantation are covered by Medicare. However, patients may choose to

Discussion

An Australian priority-setting partnership involving patients, caregivers, policy makers, clinicians, and researchers was convened in February 2014 to elicit shared research priorities for CKD. Priorities were focused on prevention, lifestyle, quality of life, and long-term impact of disease and treatment. For stages 1 to 5 CKD (non–dialysis dependent), the prioritized questions were centered on lifestyle interventions to prevent disease progression, education to improve self-management and

Conclusion

Priority-setting partnerships provide an opportunity for participative democratic approaches to research question generation44 and for wide stakeholder engagement to explore and identify research priorities. Prioritized research questions can inform patient/consumer organizations, researchers, policy makers, and funding agencies in developing a shared CKD research agenda that is relevant to all stakeholders.

Acknowledgements

A full list of those involved in the priority-setting partnership workshop follows. Guests: Prof Chris Baggoley (Chief Medical Officer, Australian Government) and Dr Davina Ghersi (National Health and Medical Research Council). Participants: Adam Martin, Alan Cass, Amber Eggersdorff, Balaji Hiremagalur, Barbara Swift, Bill Handke, Carmel Hawley, Carol Pollock, Cheryl Hyde, Cynthia Morisey, Daniel Ussher, Daniella Dickenson, Dianna Fornasier, Fabian Marsden, Filomena Diaz, Gary Goodship,

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