Aim: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly used in research to quantify how patients feel and function, and their experiences of care, however, knowledge of their utilization in routine nephrology is limited. Methods: The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) PROMs working group conducted a prospective cross-sectional survey of PROMs/PREMs use among renal ‘parent hospitals’. One survey per hospital was completed (August–November 2017). Descriptive statistics reported type and frequency of measures used and purpose of use. Results: Survey response rate was 100%. Fifty-five of 79 hospitals (70%) used at least one PROMs or PREMs for specific patient groups. PROMs were more likely to be collected from patients receiving comprehensive conservative care (45% of hospitals) than dialysis patients (32%, 31% and 28% of hospitals for home haemodialysis, peritoneal dialysis and facility dialysis, respectively). Few renal transplanting hospitals (3%) collected PROMs. The Integrated Palliative Outcome Scale-Renal (IPOS-Renal) (40% of units), and the Euro-Qol (EQ-5D-5 L) (25%), were most frequently used. The main reason for collecting PROMs was to inform clinical care (58%), and for PREMs was to fulfil private dialysis/hospital provider requirements (25%). The most commonly reported reason for not using PROMs in 24 hospitals was insufficient staff resources (79%). Sixty-two hospitals (78%) expressed interest in participating in a registry-based PROMs trial. Conclusion: Many renal hospitals in Australia and New Zealand collect PROMs and/or PREMs as part of clinical care with use varying by treatment modality. Resources are a key barrier to PROMs use.
- chronic renal insufficiencychronic renal insufficiency
- patient-reported outcome measures
- quality of life
ASJC Scopus subject areas