Use of patient‐reported outcome measures and patient‐reported experience measures in renal units in Australia and New Zealand: A cross‐sectional survey study

Abstract

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.

Feasibility and acceptability of e-PROMs data capture and feedback among patients receiving haemodialysis in the Symptom monitoring WIth Feedback Trial (SWIFT) pilot: protocol for a qualitative study in Australia

“…A recent prospective cross-sectional survey of 79 dialysis units in Australia and New Zealand showed that 55 of 79 units (70%) collected PROMs or patient-reported experience measures. 14 The Integrated Palliative Outcome Scale-Renal (IPOS-Renal) was the most commonly reported instrument to measure symptoms (40% of units) and the EQ-5D-5L for the assessment of quality of life (24%). Insufficient time and staff resources were identified as the main barriers to collection of PROMs (19 out of 24 units (79%)).…”

Renal supportive care, palliative care and end‐of‐life care: Perceptions of similarities, differences and challenges across Australia and New Zealand

“…Such services should as a priority, according to renal clinicians, include symptom management given the well‐established significant symptom burden and resulting poor quality of life in patients with advanced renal disease 17‐19 . A recent cross sectional study described the utility of patient reported symptom measures used to directly inform clinical care in Australia and New Zealand and 65% of renal units routinely measured symptoms for patients with advanced renal disease 20 . Embedding consistent metrics of symptom measurement for patients in renal supportive care services could provide collaborative patient and service outcomes and research opportunities to improve understanding of how RSC improves quality of care.…”

Funnel plots of patient‐reported outcomes to evaluate health‐care quality: Basic principles, pitfalls and considerations

“…Furthermore, various outcomes can provide insight into health‐care quality and should be taken into account when evaluating hospital performances. Nowadays, patient‐reported outcomes (PROs; eg, health‐related quality of life [HRQOL] and symptom burden) are considered important health‐care outcomes and PRO measures (PROMs) are increasingly being implemented into routine care, including nephrological care 10‐13 . Therefore, the logical next step is to include PROs—in addition to clinical outcomes—in the process of health‐care quality evaluation.…”

“…For example: the hospital rates depicted in are increasingly being implemented into routine care, including nephrological care. [10][11][12][13] Therefore, the logical next step is to include PROs-in addition to clinical outcomes-in the process of health-care quality evaluation. However, incorporation of PROs and using funnel plots for PROs is accompanied with additional challenges.…”