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

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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

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Transplantation 102():p S562, July 2018. | DOI: 10.1097/01.tp.0000543427.80244.79
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Abstract

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

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