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

Ju, Angela1,2; Josephson, Michelle A3; Jowsey-Gregoire, Sheila4; Tan, Jane5; Taylor, Quinetta6; Flower, Kevin7; Dobbels, Fabienne8; Caskey, Fergus9; Jha, Vivekanand10; Locke, Jayme11; Knoll, Greg12; Ahn, Curie13; Hanson, Camilla S1,2; Manera, Karine1,2; Sautenet, Benedicte14; Craig, Jonathan C1,2; Tong, Allison1,2

doi: 10.1097/01.tp.0000543427.80244.79
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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

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.

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