A JU1,2, M JOSEPHSON3, S JOWSEY-GREGOIRE4, J TAN5, Q TAYLOR6, K FOWLER7, F DOBBELS8, F CASKEY9, V JHA10, J LOCKE11, G KNOLL12, C AHN13, C HANSON1,2, K MANERA1,2, B SAUTENET14, J CRAIG1,2, A TONG1,2
1The University Of Sydney, Sydney, Australia, 2Centre for Kidney Research, Westmead, Australia , 3University of Chicago Medicine, Chicago, United States, 4Northwestern University , Evanston, United States , 5Mayo Clinic, Rochester, United States , 6Stanford University School of Medicine, Stanford, United States , 7Patient Family Partnership Council, Kidney Health Initiative , Chicago, United States , 8KU Leuven , Leuven, Belgium, 9University of Bristol, Bristol, United Kingdom, 10The George Institute for Global Health, Oxford, United Kingdom, 11University of Alabama, Birmingham, United States , 12The Ottawa Hospital and University of Ottawa, Ottawa, Canada , 13Seoul National University Hospital, Seoul, South Korea , 14University Francois Rabelais , Tours, France
Background: 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.
Methods: Twenty-five (43%) kidney transplant recipients/caregivers and 33 (57%) health professionals from eight countries participated. Transcripts were analyzed thematically.
Results: 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.
Conclusions: 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
PhD student working on patient-reported outcome measures for fatigue in haemodialysis and life participation in kidney transplantation.