Australia’s largest dialysis trial puts patient symptoms at the centre of care

Australia’s largest-ever clinical trial involving people receiving dialysis due to kidney failure has demonstrated the power of registry-based research to reach thousands of patients across metropolitan, regional and remote communities while bringing patient-reported outcomes into routine care and research.

The Symptom monitoring WIth Feedback Trial (SWIFT) involved 2,412 people receiving haemodialysis across Australia and was conducted in collaboration with ANZDATA, the Australia and New Zealand Dialysis and Transplant Registry, a clinical quality registry based at SAHMRI. The trial was sponsored by the University of Sydney, run through the Sydney Clinical Trials Centre and funded by the National Health and Medical Research Council (NHMRC).

Led by Principal Investigator Professor Rachael Morton from the Sydney Clinical Trials Centre and National Clinical Lead Professor Stephen McDonald, ANZDATA Executive Officer at SAHMRI, the registry-based randomised trial used electronic patient-reported outcome measures to regularly capture symptoms and quality of life directly from people receiving haemodialysis, with feedback provided to clinicians and patients alongside evidence-based guidance for symptom management.

Professor McDonald says the study addresses an aspect of dialysis care that has historically received less attention despite being highly important to patients. “People receiving dialysis often experience a significant symptom burden, and those symptoms can have a major impact on their daily lives,” Prof McDonald said. “While clinicians naturally focus on keeping people well and managing the medical aspects of kidney failure, patients consistently tell us that symptoms and quality of life are among the issues that matter most to them.”

The study also demonstrated that collecting patient-reported outcome measures across a large and geographically diverse dialysis population is both practical and valuable. Professor McDonald says this has important implications for future research and patient care.

“A major outcome of this trial is that it proved it’s possible to routinely collect patient-reported outcome measures across a large and geographically diverse dialysis population,” Prof McDonald said. “The ability to collect this information at scale creates opportunities to use patient-reported outcomes as meaningful endpoints in future clinical trials and to better evaluate interventions that aim to improve patients’ day-to-day wellbeing.”

Professor Morton says the findings provide important lessons for health services looking to embed patient-reported outcomes into routine care. “We found symptom monitoring and feedback increased symptom conversations between nephrologists and their hemodialysis patients, but did not improve overall health-related quality of life, or fatigue,” Prof Morton said. “This tells us that collecting information is only one part of the solution. We also need systems, services and multidisciplinary models of care that can respond effectively when patients report symptoms.”

Professor McDonald says the trial highlighted the value of registry-based studies in delivering large-scale research in real-world settings. “ANZDATA played a central role in enabling this trial, demonstrating how registry infrastructure can be used to conduct large-scale national clinical trials,” Prof McDonald said. “Importantly, we were able to recruit patients from a diverse range of dialysis units, including regional and remote services and centres that were previously underrepresented.”

The study included strong participation from regional and remote areas, with centres such as Thursday Island in the Torres Strait, Singleton in New South Wales, Bairnsdale in Victoria and Whyalla in South Australia contributing to the research.

Professor Morton presented the results as a Late Breaking Abstract at the American Society of Nephrology in Denver, Colorado.