TY - JOUR
T1 - Establishing a Core Outcome Measure for Life Participation
T2 - A Standardized Outcomes in Nephrology-kidney Transplantation Consensus Workshop Report
AU - SONG-Tx Life Participation Workshop Investigators
AU - Health professionals (includes 2 patients from the SONG-Tx Graft Health Expert Working Group)
AU - Patients and family members
AU - Ju, Angela
AU - Josephson, Michelle A.
AU - Butt, Zeeshan
AU - Jowsey-Gregoire, Sheila
AU - Tan, Jane
AU - Taylor, Quinetta
AU - Fowler, Kevin
AU - Dobbels, Fabienne
AU - Caskey, Fergus
AU - Jha, Vivekanand
AU - Locke, Jayme
AU - Knoll, Greg
AU - Ahn, Curie
AU - Hanson, Camilla S.
AU - Sautenet, Benedicte
AU - Manera, Karine
AU - Craig, Jonathan C.
AU - Howell, Martin
AU - Rutherford, Claudia
AU - Tong, Allison
AU - Harden, Paul
AU - Hawley, Carmel
AU - Holdaas, Hallvard
AU - Israni, Ajay
AU - Jesse, Michelle
AU - Kane, Brenna
AU - Kanellis, John
AU - Kiberd, Bryce
AU - Kim, Joseph
AU - Larsen, Chris
AU - Leichtman, Alan
AU - Lentine, Krista
AU - Malone, Andrew
AU - Mannon, Roslyn
AU - Oberbauer, Rainer
AU - Patzer, Rachel
AU - Peipert, John Devin
AU - Phan, Hai An
AU - Poggio, Emilio
AU - Reed, Rihannon
AU - Scandling, John
AU - Tang, Ignatius
AU - Watson, Chris
AU - Contrares, Daniel
AU - Contreras, Patricia
AU - Cross, Daley
AU - Juodvalkis, Egle
AU - Koide, Den
AU - Koide, Jinny
AU - Kozarewicz, Adam
PY - 2019/6/1
Y1 - 2019/6/1
N2 - 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.
AB - 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.
UR - https://www.scopus.com/pages/publications/85062344200
U2 - 10.1097/TP.0000000000002476
DO - 10.1097/TP.0000000000002476
M3 - Article (Academic Journal)
C2 - 30300284
AN - SCOPUS:85062344200
SN - 2373-8731
VL - 103
SP - 1199
EP - 1205
JO - Transplantation Direct
JF - Transplantation Direct
IS - 6
ER -