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Developing a Set of Core Patient-Reported Outcomes for Kidney Replacement Therapy: A Modified Delphi Study
Jessica Nikolovski1, Brendan Smyth1,2, Shyamsundar Muthuramalingam3
1NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia.
Journal of Renal Care
|July 1, 2026
Summary
Patient-reported outcome measures like EuroQOL-5 Dimensions-5 Levels and Integrated Palliative care Outcome Scale-Renal are recommended for the Australia and New Zealand Dialysis and Transplant Registry. These tools will improve patient outcome assessments in kidney care.
Area of Science:
- Nephrology
- Health Services Research
- Patient-Reported Outcomes
Background:
- Patient-reported outcome measures (PROMs) are crucial for understanding the impact of kidney failure and treatment on quality of life.
- However, their use in Australian and New Zealand kidney care is inconsistent.
Purpose of the Study:
- To identify suitable generic and kidney-specific PROMs for the Australia and New Zealand Dialysis and Transplant Registry.
- To determine optimal administration methods, timing, and data presentation for these PROMs.
Main Methods:
- A modified Delphi study involving online surveys and a virtual consensus workshop.
- Participants included patients, carers, clinicians, researchers, and registry staff from Australia, New Zealand, and the UK.
Main Results:
- The EuroQOL-5 Dimensions-5 Levels (generic) and Integrated Palliative care Outcome Scale-Renal (kidney-specific) were selected.
- Electronic administration at home or dialysis units was preferred, with support available.
- Consensus on frequency was not reached, but most preferred baseline and 6-monthly completion.
Conclusions:
- EuroQOL-5 Dimensions-5 Levels and Integrated Palliative care Outcome Scale-Renal are recommended for the Australia and New Zealand Dialysis and Transplant Registry.
- Standardized PROM collection will enhance patient outcome assessment and support quality improvement in bi-national kidney care.
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