Establishing a core outcome measure for life participation: A standardized outcomes in nephrology-kidney transplantation consensus workshop report

Angela Ju*, Michelle A. Josephson, Zeeshan Butt, Sheila Jowsey-Gregoire, Jane Tan, Quinetta Taylor, Kevin Fowler, Fabienne Dobbels, Fergus Caskey, Vivekanand Jha, Jayme Locke, Greg Knoll, Curie Ahn, Camilla S. Hanson, Benedicte Sautenet, Karine Manera, Jonathan C. Craig, Martin Howell, Claudia Rutherford, Allison Tong

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

19 Scopus citations


Background. Kidney transplantation confers substantial survival and quality of life benefits for many patients with end-stage kidney disease compared with dialysis, but complications and side effects of immunosuppression can impair participation in daily life activities. Life participation is a critically important patient-reported outcome for kidney transplant recipients but is infrequently and inconsistently measured in trials. We convened a consensus workshop on establishing an 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 8 countries participated in 6 facilitated breakout group discussions. Transcripts were analyzed thematically. Results. Four themes were identified. Returning to normality conveyed the patients' goals to fulfill their roles (ie, in their family, work, and community) and reestablish a normal lifestyle after transplant. Recognizing the diverse meaning and activities of "life" explicitly acknowledged life participation as a subjective concept that could refer to different activities (eg, employment, recreation, family duties) for each individual patient. Capturing vulnerability and fluctuations posttransplant (eg, due to complications and side-effects) distinguished between experiences in the first year posttransplant and the long-term impact of transplantation. Having a scientifically rigorous, feasible, and meaningful measure was expected to enable consistent and frequent assessment of life participation in trials in kidney transplantation. Conclusions. A feasible and validated core outcome measure for life participation is needed so that this critically important patient-reported outcome can be consistently and meaningfully assessed in trials in kidney transplantation to inform decision making and care of recipients.

Original languageEnglish (US)
Pages (from-to)1199-1205
Number of pages7
Issue number6
StatePublished - Jun 1 2019

ASJC Scopus subject areas

  • Transplantation


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