Developing a Set of Core Patient‐Reported Outcomes for Kidney Replacement Therapy: A Modified Delphi Study
Jessica Nikolovski, Brendan Smyth, Shyamsundar Muthuramalingam, Stephen McDonald, Jessica Roydhouse, Olalekan Lee Aiyegbusi, Claudia Rutherford, Amy Luchterhand, Paolo Cardelli, Rachael L. Morton,ABSTRACT
Background
Patient‐reported outcome measures can highlight the impact of kidney failure and kidney replacement therapy on a person's health‐related quality of life and symptom burden. But their implementation is limited and heterogeneous within Australian and New Zealand kidney care.
Objective
Identify one generic health‐related quality of life and one kidney‐specific patient‐reported outcome measure suitable for inclusion within the Australia and New Zealand Dialysis and Transplant Registry, including the mode and location of administration, timing and frequency of completion, and data presentation format.
Design
A three‐phase modified Delphi study comprising two online surveys and a virtual consensus workshop.
Participants
Patients, carers, clinicians, researchers, and kidney registry staff from Australia, New Zealand and the United Kingdom.
Measurements
Participants voted on: their preferred patient‐reported outcome measures, the mode and location of administration, timing and frequency of completion, and how they would like the data presented at the individual and aggregated levels.
Results
Fifty‐three people consented to the study, 41 completed Survey #1, 43 completed Survey #2, and 30 attended the consensus workshop. The EuroQOL‐5 Dimensions‐5 Levels for generic health‐related quality of life and the Integrated Palliative care Outcome Scale‐Renal for kidney‐specific outcomes reached majority vote. Participants agreed on electronic completion at home or in the dialysis unit to allow for staff support if needed. Consensus was not reached on the frequency of administration; most voted for completion at the commencement of dialysis or transplant and 6‐monthly thereafter as a minimum.
Conclusion
The EuroQOL‐5 Dimensions‐5 Levels and the Integrated Palliative care Outcome Scale‐Renal were recommended for collection by the Australia and New Zealand Dialysis and Transplant Registry. These will enable standardised, meaningful assessments of patients' health outcomes and support continuous quality improvement across kidney care services bi‐nationally.