Related Experiment Video
Updated: Feb 26, 2026
Digital Home-Monitoring of Patients after Kidney Transplantation: The MACCS Platform
Published on: April 12, 2021
Toward Establishing Core Outcome Domains For Trials in Kidney Transplantation: Report of the Standardized Outcomes in
Allison Tong1, John Gill, Klemens Budde
11 Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia. 2 Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. 3 Division of Nephrology, University of British Columbia, Vancouver, BC, Canada. 4 Department of Nephrology, Charité-Universitätsmedizin Berlin, Germany. 5 Transplant Unit, University of Edinburgh, Edinburgh, United Kingdom. 6 Renal Division, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, United States. 7 ESRD Network 18, Los Angeles, CA. 8 Clinique Universitaire de Nephrologie, CHU Michallon, Grenoble, France. 9 Centre for Transplant and Renal Research, Westmead Hospital, NSW, Westmead, Australia. 10 Department of Medicine, The University of Chicago, Chicago, IL. 11 Department of Surgery, University of Minnesota, Minneapolis, MN. 12 School of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom. 13 Department of Nephrology and Clinical Immunology, University Francois Rabelais, Tours Hospital, Tours, France. 14 INSERM, U1246, Tours, Franc Tours, France. 15 Department of Nephrology, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Los Angeles, CA. 16 William B. Schwartz Division of Nephrology, Tufts Medical Center, Boston, MA. 17 Jockey Club Nephrology & Urology Centre, Princess Margaret Hospital, Hong Kong. 18 The University of Hong Kong, Queen Mary Hospital, Hong Kong. 19 Department of Nephrology, Monash Medical Centre, Melbourne, Australia. 20 Depatment of Renal Medicine, Singapore General Hospital, Singapore.
Background:
Treatment decisions in kidney transplantation requires patients and clinicians to weigh the benefits and harms of a broad range of medical and surgical interventions, but the heterogeneity and lack of patient-relevant outcomes across trials in transplantation makes these trade-offs uncertain, thus, the need for a core outcome set that reflects stakeholder priorities.
Methods:
We convened 2 international Standardized Outcomes in Nephrology-Kidney Transplantation stakeholder consensus workshops in Boston (17 patients/caregivers; 52 health professionals) and Hong Kong (10 patients/caregivers; 45 health professionals). In facilitated breakout groups, participants discussed the development and implementation of core outcome domains for trials in kidney transplantation.
Results:
Seven themes were identified. Reinforcing the paramount importance of graft outcomes encompassed the prevailing dread of dialysis, distilling the meaning of graft function, and acknowledging the terrifying and ambiguous terminology of rejection. Reflecting critical trade-offs between graft health and medical comorbidities was fundamental. Contextualizing mortality explained discrepancies in the prioritization of death among stakeholders-inevitability of death (patients), preventing premature death (clinicians), and ensuring safety (regulators). Imperative to capture patient-reported outcomes was driven by making explicit patient priorities, fulfilling regulatory requirements, and addressing life participation. Specificity to transplant; feasibility and pragmatism (long-term impacts and responsiveness to interventions); and recognizing gradients of severity within outcome domains were raised as considerations.
Conclusions:
Stakeholders support the inclusion of graft health, mortality, cardiovascular disease, infection, cancer, and patient-reported outcomes (ie, life participation) in a core outcomes set. Addressing ambiguous terminology and feasibility is needed in establishing these core outcome domains for trials in kidney transplantation.
More Related Videos
Related Concept Videos
01:30Acute Kidney Injury IV: Diagnostic Studies and Prevention
01:29Acute Kidney Injury III: Clinical Manifestations
01:22Acute Kidney Injury I: Introduction
01:28Kidney Transplant I: Introduction
01:24Chronic Kidney Disease II: Clinical Manifestations
01:20Acute Kidney Injury V: Interprofessional Care