M HOWELL1,2, B SAUTENET, A JU1,2,A VIECELLI3,4, G WONG1,5, K HOWARD1 JC CRAIG1,2, A TONG1,2 FOR THE SONG-HD INITIATIVE
1Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; 3 School of Medicine, University of Queensland, Brisbane, Queensland; 4Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland; 5Centre for Transplant and Renal Research, Westmead Hospital, Sydney, Australia
Aim: To assess the relative importance of outcomes in transplantation, vascular access and fatigue in haemodialysis.
Background: Patients and health professionals have different perspectives of kidney disease and differ in their priorities for health outcomes. Priorities may also vary with age, experiences and cultural background.
Method: As part of the Standardised Outcomes in Nephrology initiative, preferences were elicited using Best-Worst Scaling tasks in three multi-language international surveys of patients/caregivers and health professionals. Surveys included 16 transplant, 12 vascular access and 11 fatigue in haemodialysis outcomes. Calculated preference scores range from 1 (least important) to 9 (most important).
Results: To date 607 patients/caregivers and 1,124 health professionals from 51 countries have participated. Differences in preferences between and within patient and health professional groups occurred for the majority of outcomes in transplantation, vascular access and fatigue for outcomes of varying consequence. For example hospitalisation was less important for transplant and dialysis patients compared to health professionals (respective preference scores of 1.2 [95%CI 0.94, 1.49], 2.14 [1.76, 2.51] for transplant and 4.75 [4.21, 5.28], 6.53 [6.20, 6.57] for vascular access) and death was substantially more important for health professionals (9.0:7.8 to 10.2) than for transplant patients/caregivers (5.1:4.6 to 5.7). Examples of differences between groups include life participation in fatigue which was most important for English-speaking patients (9.0:7.8 to 10.4), while for Spanish-speaking patients ‘dialysis fatigue’ was most important (9.0:7.0 to 11.0). Health professionals completing Chinese, Malay and English vascular access surveys had different preferences for hospitalisation, bleeding, oedema, pain and maturation.
Conclusion: Patients and health professionals have differing priorities for outcomes across transplantation, vascular access and fatigue. Furthermore differences occur within groups of patients and health professionals.