Life participation is a critically important outcome for kidney transplant recipients but it is inconsistently and infrequently measured in trials. We convened a consensus workshop on establishing a core outcome measure for life participation for use in all trials in kidney transplantation.
Twenty-five (43%) kidney transplant recipients/caregivers and 33 (57%) health professionals from eight countries participated. Transcripts were analyzed thematically.
Four themes were identified. Returning to normality illustrated the patients’ desires to fulfil their given role and re-establish a normal lifestyle. Recognizing the diverse meaning of ‘life’ explicitly acknowledged life participation as a subjective outcome that may refer to different activities for different patients. Capturing fluctuations in issues post-transplant recognized the long-term impact of transplantation and emphasized the need to consider time since receiving the transplant. Having a scientifically rigorous, feasible and meaningful measure would facilitate the consistent and frequent assessment of life participation in trials.
A simple and inexpensive core outcome measure for life participation will allow this important outcome to be consistently and meaningfully assessed in trials in kidney transplantation to inform decision-making and care of patients
1School of Public Health, The University of Sydney, Sydney, Australia;
2Centre for Kidney Research, Children's Hospital at Westmead, Westmead, Australia;
3Department of Medicine, The University of Chicago, Chicago, IL, United States;
4Northwestern University, Evanston, IL, United States;
5Mayo Clinic, Rochester, MN, United States;
6Department of Medicine, Stanford University School of Medicine, Stanford, CA, United States;
7Patient Family Partnership Council, Kidney Health Initiative, Chicago, IL, United States;
8University of Leuven, Leuven, Belgium;
9School of Social and Community Medicine, University of Bristol, Bristol, United Kingdom;
10The George Institute for Global Health, University of Oxford, Oxford, United Kingdom;
11School of Medicine, University of Alabama, Birmingham, AL, United States;
12Division of Nephrology, The Ottawa Hospital and University of Ottawa, Ottawa, ON, Canada;
13Seoul National University Hospital, Seoul, Korea;
14Department of Nephrology and Clinical Immunology, University Francois Rabelais, Tours, France.