Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology – Kidney Transplantation (SONG-Tx) Consensus Workshop Report.

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BackgroundLife 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.MethodsTwenty-five (43%) kidney transplant recipients/caregivers and 33 (57%) health professionals from eight countries participated. Transcripts were analyzed thematically.ResultsFour 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.ConclusionsA 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

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