Patient-Centered Research and Outcomes in Cancer and Kidney Transplantation

Ellen Dobrijevic; Nicole Scholes-Robertson; Chandana Guha; Martin Howell; Allison Jauré; Germaine Wong; Anita van Zwieten

doi:10.1016/j.semnephrol.2024.151499

Patient-Centered Research and Outcomes in Cancer and Kidney Transplantation

Semin Nephrol. 2024 Mar 26:151499. doi: 10.1016/j.semnephrol.2024.151499. Online ahead of print.

Authors

Ellen Dobrijevic¹, Nicole Scholes-Robertson², Chandana Guha³, Martin Howell⁴, Allison Jauré³, Germaine Wong⁵, Anita van Zwieten³

Affiliations

¹ Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia. Electronic address: ellen.dobrijevic@health.nsw.gov.au.
² Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia; Rural and Remote Health NT, Flinders University, Alice Springs, Australia.
³ Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia.
⁴ Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia; Menzies Centre for Health Policy and Economics, The University of Sydney, Sydney, Australia.
⁵ Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia; Centre for Transplant and Renal Research, Westmead Hospital, Westmead, Australia.

PMID: 38538454
DOI: 10.1016/j.semnephrol.2024.151499

Abstract

Cancer has been identified by kidney transplant recipients as a critically important outcome. The co-occurrence of cancer and kidney transplantation represents a complex intersection of diseases, symptoms, and competing priorities for treatments. Research that focuses on biochemical parameters and clinical events may not capture the priorities of patients. Patient-centered research can improve the relevance and efficiency of research and is particularly pertinent in the setting of cancer and kidney transplantation to facilitate shared decision-making in complex clinical situations. In addition, patient-reported outcomes can facilitate the assessment of patients' experiences, symptom burden, treatment side effects, and quality of life. This review discusses patient-centered research in the context of kidney transplantation and cancer, including consumer involvement in research and patient-centered outcomes and their measures and inclusion in core outcome sets.

Keywords: Cancer; kidney transplantation; patient-centered research; patient-reported outcome measures; patient-reported outcomes.

Publication types

Review