Ms CHANDANA GUHA1,2, Dr ANITA VAN ZWIETEN1,2, Ms RABIA KHALID1,2, Dr SIAH KIM1,2, Dr AMANDA WALKER3, Dr ANNA FRANCIS4,5,6, Dr MADELEINE DIDSBURY1, Prof ARMANDO TEIXEIRA-PINTO1,2, Dr BELINDA BARTON7, Dr CHANEL PRESTIDGE8, Dr EMILY LANCSAR9, Dr FIONA MACKIE10,11, Mr JOSEPH KWON12, Prof KIRSTEN HOWARD1,13, Dr KYLIE-ANN MALLIT1,2, Dr MARTIN HOWELL1,2, Prof ALLISON JAURE1,2, Dr ALISON HAYES1, Dr RAKHEE RAGHUNANDAN1, Prof STAVROS PETROU12, Prof SUNCICA LAH14, Prof STEVEN MCTAGGART4,6, Prof JONATHAN C CRAIG15, Prof GERMAINE WONG1,2
1Sydney School of Public Health, The University of Sydney, Camperdown, Australia, 2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia, 3Royal Children’s Hospital, Melbourne, Australia, 4School of Medicine, University of Queensland, Brisbane, Australia, 5Centre for Kidney Disease Research, Translational Research Institute, Brisbane, Australia, 6Child and Adolescent Renal Service, Queensland Children’s Hospital, Brisbane, Australia, 7The Children’s Hospital at Westmead and Paediatrics and Child Health (CHERI), University of Sydney, Sydney, Australia, 8Starship Children’s Hospital, Auckland, New Zealand, 9Department of Health Services Research and Policy, Australian National University, Canberra, Australia, 10Sydney Children’s Hospital, Randwick, Australia, 11School of Women’s and Child Health, University of New South Wales, Randwick, Australia, 12Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, England, 13Menzies Centre for Health Policy & Economics, School of Public Health, University of Sydney, Sydney, Australia, 14School of Psychology, University of Sydney, Sydney, Australia, 15College of Medicine and Public Health, Flinders University, Adelaide, Australia
Background and Aim
Children with chronic kidney disease (CKD) frequently experience debilitating symptoms and morbidities impacting their quality of life over their life course. This study explores the trajectory of health-related quality of life (HRQoL) over time in children with stage 1-5, those receiving dialysis and transplant recipients at baseline.
Methods
This analysis uses data from the Kids with CKD (KCAD) study where 377 children (aged 6-18 years) with CKD stages 1-5, dialysis, or transplant, were followed biennially for four years. Multi Attribute Utility (MAU) scores were measured at baseline, 2- and 4-years using the Health Utilities Index Mark 3. A multivariable linear mixed model was used to assess the trajectories of the HRQoL.
Results
Overall, there were 199 children with CKD stages 1-5, 43 on dialysis and 135 kidney transplant recipients at baseline. Over half (18, 51%) of the children on dialysis received a kidney transplant by the end of year 4, but the CKD status/treatment modality of most other children remained unchanged. An interaction between CKD stage at baseline and follow-up time (p=0.01), indicated the slopes of the HRQoL scores differed between children by CKD stage. Compared to transplant recipients, the MAU scores increased by 0.05 (0.01 to 0.09) per year in children treated with dialysis at baseline, but the scores remained unchanged for children with CKD stages 1-5 (-0.003, -0.02 to 0.02).
Conclusion
Children treated with dialysis had improvements in their utility scores that may have been driven by the transition from dialysis to transplantation. The HRQoL for the rest remained stable over four years. Efforts to improve the transplantation rates and access to transplantation should be made for children with CKD.
Biography:
Chandana Guha is a consumer representative with the Sydney School of Public Health, University of Sydney and has commenced a PhD in 2021. As mother of a daughter now 26 years of age who was diagnosed with chronic kidney disease (CKD) at 2 years and transplanted at 10 years of age, Chandana is passionate about research that translates into policy and practice to address the needs and priorities of consumers. Her key research interest is to develop a program of work that integrates lived experiences of consumer in developing interventions for children and the elderly with CKD to improve outcomes.