IDENTIFYING RESEARCH PRIORITES IN CHRONIC KIDNEY DISEASE: A WORKSHOP WITH PATIENTS,CAREGIVERS AND HEALTH PROFESSIONALS

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IDENTIFYING RESEARCH PRIORITES IN CHRONIC KIDNEY DISEASE: A WORKSHOP WITH PATIENTS,CAREGIVERS AND HEALTH PROFESSIONALS

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Co-author 1

Nicole Scholes-Robertson nicole.scholes-robertson@sydney.edu.au The University of Sydney Sydney School of Public Health Sydney Australia * The Childrens Hospital at Westmead The Centre for Kidney Research Sydney Australia

Co-author 2

Dale Coghlan dale.coghlan@flinders.edu.au Flinders University cFaculty of Mediine and Public Health Adelaide Australia -

Co-author 3

Allison Jaure allison.jaure@sydney.edu.au The University of Sydney Sydney School of Public Health Sydney Australia - The Childrens Hospital at Westmead The Centre For Kidney Research Sydney Australia

Co-author 4

Chandana Guha chandana.guha@sydney.edu.au The University of Sydney Sydney School of Public helath Sydney Australia -

Co-author 5

Jonathan Craig jonathan.craig@flinders.edu.au Flinders University Faculty of Medicine and Public Health Adelaide Australia -

Co-author 6

Shilpanjali Jesudason Shilpa.Jesudason@sa.gov.au Royal Adelaide Hospital Central and Northern Adelaide Renal and Transplantation Service (CNARTS) Adelaide Australia -

Co-author 7

Germaine Wong germaine.wong@health.nsw.gov.au The University of Sydney Sydney School of Public Health Sydney Australia -

Co-author 8

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Introduction

Health research priority setting that involves patients and caregivers can help to ensure that resources are directed towards areas that matter most to end-users, which may strengthen the uptake and impact of evidence on patient and healthcare outcomes. The aims of this project are 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

We conducted a prioritisation workshop - simultaneously in-person (Sydney, Adelaide, Brisbane) and online with patients, caregivers and health professionals from Australia and New Zealand who ranked the top 5 priority research questions (based on a systematic review and survey) for CKD (not requiring kidney replacement therapy), peritoneal dialysis (PD), haemodialysis (HD) and transplantation, and the top five overall research questions from all CKD areas.

Results

A total of 101 participants contributed to the study, including 37 patients/caregivers n=37, 48 clinicians and 16 policymakers. Following two rounds of prioritization ranking, the leading research priorities for individuals with CKD not yet requiring dialysis were CKD prevention and prevention of kidney function deterioration. Among those receiving dialysis, interventions to support mental health consistently emerged as a key priority across both HD and PD groups. Participants treated with PD also identified improving the uptake and sustainability of home dialysis as an important research area. At the same time, those on HD emphasized the importance of improving the overall quality of life through research aimed at shared decision making, mental health and fatigue. In the domains of kidney transplantation, stakeholders ranked “interventions to maximize patient and graft survival” as the highest priority, followed closely by “interventions can improve the rates of deceased and living kidney donation?”

Conclusion

The top overall research priorities overall related to prevention of CKD and preventing deterioration of CKD through health promotion and lifestyle programs. For HD, the top questions related to shared decision making, mental health and fatigue, whilst for PD they were to do with teaching PD, mental health and caregiver burden. These prioritised research questions will inform the shared research agenda for patients, caregivers, researchers, health professionals, policy makers and funding agencies in CKD.

Kewords