title: Research Priorities in CKD: Report of a National Workshop Conducted in Australia.
abstract: 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.
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia. Electronic address: allison.tong@sydney.edu.au.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.affiliation: Crowe Associates Ltd, Oxon, United Kingdom.
authors.forename: Sally
authors.initials: S
authors.lastname: Crowe
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
authors.forename: Shingisai
authors.initials: S
authors.lastname: Chando
authors.affiliation: Menzies School of Health Research, Charles Darwin University, Darwin, Northern Territory, Australia.
authors.forename: Alan
authors.initials: A
authors.lastname: Cass
authors.affiliation: Royal Prince Alfred Hospital, Sydney, New South Wales, Australia.
authors.forename: Steve J
authors.initials: SJ
authors.lastname: Chadban
authors.affiliation: Centre for Transplant and Renal Research, Westmead Hospital, Sydney, New South Wales, Australia.
authors.forename: Jeremy R
authors.initials: JR
authors.lastname: Chapman
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Department of Nephrology, Concord Hospital, Sydney, New South Wales, Australia; Renal and Metabolic Division, The George Institute, Sydney, New South Wales, Australia.
authors.forename: Martin
authors.initials: M
authors.lastname: Gallagher
authors.affiliation: Queensland School of Medicine, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia; Translational Research Institute, Brisbane, Australia; Metro South and Ipswich Nephrology and Transplant Services (MINTS), Brisbane, Australia.
authors.forename: Carmel M
authors.initials: CM
authors.lastname: Hawley
authors.affiliation: Centre for Health Communication and Participation, La Trobe University, Melbourne, Victoria, Australia.
authors.forename: Sophie
authors.initials: S
authors.lastname: Hill
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Howard
authors.affiliation: Queensland School of Medicine, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia; Translational Research Institute, Brisbane, Australia; Metro South and Ipswich Nephrology and Transplant Services (MINTS), Brisbane, Australia.
authors.forename: David W
authors.initials: DW
authors.lastname: Johnson
authors.affiliation: Monash Medical Centre and Monash University, Clayton, Victoria, Australia.
authors.forename: Peter G
authors.initials: PG
authors.lastname: Kerr
authors.affiliation: Centre for Health Services Research, The University of Western Australia, Perth, Western Australia, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: McKenzie
authors.affiliation: Monash Medical Centre and Monash University, Clayton, Victoria, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Parker
authors.affiliation: Renal and Metabolic Division, The George Institute, Sydney, New South Wales, Australia.
authors.forename: Vlado
authors.initials: V
authors.lastname: Perkovic
authors.affiliation: Centre for Health Communication and Participation, La Trobe University, Melbourne, Victoria, Australia.
authors.forename: Kevan R
authors.initials: KR
authors.lastname: Polkinghorne
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Renal Division, Kolling Institute, Sydney, New South Wales, Australia.
authors.forename: Carol
authors.initials: C
authors.lastname: Pollock
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Diaverum Medical Scientific Office and Diaverum Academy, Lund, Sweden; Division of Nephrology and Transplantation, Amedeo Avogadro University of Eastern Piedmont, Bari, Italy; Department of Translational Medicine (Italy), University of Bari, Mario Negri Sud Foundation, Bari, Italy.
authors.forename: Giovanni F M
authors.initials: GF
authors.lastname: Strippoli
authors.affiliation: Department of Medicine, University of Ottawa, Ottawa, Canada.
authors.forename: Peter
authors.initials: P
authors.lastname: Tugwell
authors.affiliation: Department of Renal Medicine, The Alfred Hospital, Melbourne, Victoria, Australia.
authors.forename: Rowan G
authors.initials: RG
authors.lastname: Walker
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia; Centre for Transplant and Renal Research, Westmead Hospital, Sydney, New South Wales, Australia.
authors.forename: Angela C
authors.initials: AC
authors.lastname: Webster
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia; Centre for Transplant and Renal Research, Westmead Hospital, Sydney, New South Wales, Australia.
authors.forename: Germaine
authors.initials: G
authors.lastname: Wong
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D017028:Caregivers; D032921:Consensus; D005260:Female; D006282:Health Personnel; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D051436:Renal Insufficiency, Chronic / Q000628:therapy*; D012106:Research; D012108:Research Personnel; D055815:Young Adult
keywords: Kidney Health Australia (KHA); Research; caregiver; chronic kidney disease (CKD); clinical research; disease prevention; funding decisions; health care worker; patient; patient-centered care; priority setting; quality of life; renal replacement therapy; resource allocation; stakeholder