Hegerty K1, Tong A2,3, Wolley M4, Baumgart A2, Welch A5, Robison L5, Kerr P6, Roberts M7, Johnson D1,5, Hawley C1,5, Viecelli A1,5
1Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia, 2Sydney School of Public Health, The University of Sydney, Sydney, Australia, 3Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia, 4Department of Nephrology, Royal Brisbane and Women’s Hospital, Brisbane, Australia, 5Australasian Kidney Trials Network, CHSR, University of Queensland, Brisbane, Australia, 6Department of Nephrology, Monash Medical Centre, Melbourne, Australia, 7Eastern Health Clinical School, Monash University, Melbourne, Australia
Aim: This patient workshop aimed to describe consumer views on key outcomes of interest to inform trial design for a multinational randomised controlled trial comparing safety, clinical and cost efficacy of standard vs incremental haemodialysis.
Background: Haemodialysis is burdensome, costly and associated with poor quality of life. Starting haemodialysis incrementally at 2 sessions per week may benefit residual kidney function and quality of life whilst remaining safe and cost-effective.
Methods: We convened two 60-minute online workshops in Australia with patients and caregivers to identify key outcomes of interest from a list provided relating to initiation of dialysis using an incremental dialysis approach. New suggestions for key outcomes of interest were also included during the workshop. A points system was used to prioritize outcomes. We identified safety concerns and descriptive themes from the patient’s priorities regarding initiation of dialysis.
Results: This workshop involved 31 attendees (1 caregiver and 30 patients). Patients were currently, previously or soon to be dialysis dependent. All participants agreed that incremental dialysis would be preferred. The top five outcomes of interest were quality of life (56 points), residual kidney function (27 points), mortality (16 points), fluid overload (12.5 points) and ability to work (10 points). Four key themes were identified which underpinned the prioritised outcomes of interest when commencing haemodialysis: unpreparedness and pressure to adapt, disruption to daily living, threats to safety and hope/future planning.
Conclusions: The concept of incremental haemodialysis is viewed favourably by patients with kidney failure, who considered enriched quality of life as the most important outcome to study. Clinical trials in dialysis must be informed by patient perspectives on key outcomes, trial design, safety and acceptability of intervention.
Katharine has recently Fellowed with the RACP in Nephrology and is currently completing a clinical fellowship in renal transplantation at the Princess Alexandra Hospital. She will commence full-time PhD in 2022 working on the INCH-HD trial through the Australasian Kidney Trials Network. She enjoys all aspects of Nephrology but has a particular interest in renal transplantation.