RL MORTON1, N LIOUFAS2,3, K DANSIE4,5, S PALMER6, M JOSE7,R RAJ8, A SALMON9, M SYPEK4,10, A TONG11, M LUDLOW12, N BOUDVILLE13, S MACDONALD4,5,14
1NHMRC Clinical Trials Centre, The University of Sydney, Camperdown, Australia, 2Department of Nephrology, Western Health, Sunshine Hospital, St Albans, Australia, 3Western Clinical School, School of Medicine, The University of Melbourne, Melbourne, Australia, 4Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), Adelaide, Australia, 5University of Adelaide, Adelaide, Australia, 6University of Otago Christchurch , Christchurch, New Zealand, 7School of Medicine, University of Tasmania , , Australia, 8Launceston General Hospital, Launceston, Australia, 9Renal Service, Waitemata District Health Board, Auckland, New Zealand, 10Department of Nephrology, Royal Melbourne Hospital, Melbourne, Australia, 11Sydney School of Public Health, Sydney Medical School, The University of Sydney,, Camperdown, , Australia, 12Kidney Health Australia, Adelaide , Australia, 13Sir Charles Gairdner hospital, Perth, Australia, 14Central and Northern Renal Transplant Service, Royal Adelaide hospital, Adelaide, Australia
Aim: The Australia New Zealand Dialysis and Transplant registry (ANZDATA) PROMs Working Group sought to characterise current practices for measurement and use of PROMs in Australian and New Zealand renal units and gauge interest in registry-based PROMs collection.
Background: Patient-reported outcome measures (PROMs) are increasingly used in research studies to quantify how patients feel and function, but their use in routine nephrology care is infrequently described.
Methods: Cross-sectional survey of Australia/New Zealand ‘parent’ renal units. One survey per unit was completed via email or telephone interview (August–November 2017). Descriptive statistics and regression models determined the factors associated with PROMs collection, treatment groups measured, instruments used and purpose for collection.
Results: Survey response rate was 100%. Thirty-nine of 79 units (49%) ascertained at least one PROM, strongly associated with the unit’s jurisdiction (p<0.001) and public versus private status (p<0.001). PROMs were more likely to be ascertained among patients receiving conservative care (45% of units) than dialysis patients (32%, 31% and 28% of units for home haemodialysis, peritoneal dialysis and facility dialysis, respectively) or transplant patients (3%). The Palliative Outcome Scale instruments (IPOS-Renal and POS-S) (65% of units), and the Euro-Qol (EQ-5D-5L) (25%) were most frequently used. The main reason for collecting PROMs was to inform clinical care (58%). The most commonly reported reason for not using PROMs was insufficient staff resources (79%). Sixty-two units (78%) expressed interest in participating in a registry-based PROMs trial.
Conclusions: Approximately half the renal units in Australia and New Zealand collect PROMs as part of clinical care with use varying by treatment modality. Resources are a key barrier to ongoing PROMs collection. There is considerable interest in a registry-based PROMs trial.
Associate Professor Rachael Morton, MScMed(Clin Epi)(Hons), PhD, is Director of Health Economics at the NHMRC Clinical Trials Centre, University of Sydney. She is an academic health economist and clinical trialist with research interests in patient reported outcomes and economic evaluation of interventions in chronic kidney disease and cancer. A/Prof Morton leads the ANZDATA PROMs Working Group, and is an Executive member of the ANZSN Dialysis Advisory Committee. She has over 100 publications and currently holds an NHMRC Translating Research Into Practice (TRIP) Fellowship to embed patient reported outcomes into clinical quality registries.