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; SONG-Tx Life Participation Workshop Investigators

doi:10.1097/TP.0000000000002476

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

SONG-Tx Life Participation Workshop Investigators

Research output: Contribution to journal › Article › peer-review

45 Citations (Scopus)

Abstract

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 language	English
Pages (from-to)	1199-1205
Number of pages	7
Journal	Transplantation
Volume	103
Issue number	6
DOIs	https://doi.org/10.1097/TP.0000000000002476
Publication status	Published - 1 Jun 2019
Externally published	Yes

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This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

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10.1097/TP.0000000000002476Licence: In Copyright

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Ju, A., Josephson, M. A., Butt, Z., Jowsey-Gregoire, S., Tan, J., Taylor, Q., Fowler, K., Dobbels, F., Caskey, F., Jha, V., Locke, J., Knoll, G., Ahn, C., Hanson, C. S., Sautenet, B., Manera, K., Craig, J. C., Howell, M., Rutherford, C., ... SONG-Tx Life Participation Workshop Investigators (2019). Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology-kidney Transplantation Consensus Workshop Report. Transplantation, 103(6), 1199-1205. https://doi.org/10.1097/TP.0000000000002476

@article{98ee30997d634a44acd34f4cae37e162,

title = "Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology-kidney Transplantation Consensus Workshop Report",

abstract = "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.",

author = "Angela Ju and Josephson, \{Michelle A.\} and Zeeshan Butt and Sheila Jowsey-Gregoire and Jane Tan and Quinetta Taylor and Kevin Fowler and Fabienne Dobbels and Fergus Caskey and Vivekanand Jha and Jayme Locke and Greg Knoll and Curie Ahn and Hanson, \{Camilla S.\} and Benedicte Sautenet and Karine Manera and Craig, \{Jonathan C.\} and Martin Howell and Claudia Rutherford and Allison Tong and \{SONG-Tx Life Participation Workshop Investigators\}",

year = "2019",

month = jun,

day = "1",

doi = "10.1097/TP.0000000000002476",

language = "English",

volume = "103",

pages = "1199--1205",

journal = "Transplantation",

issn = "0041-1337",

publisher = "Lippincott Williams \& Wilkins",

number = "6",

}

Ju, A, Josephson, MA, Butt, Z, Jowsey-Gregoire, S, Tan, J, Taylor, Q, Fowler, K, Dobbels, F, Caskey, F, Jha, V, Locke, J, Knoll, G, Ahn, C, Hanson, CS, Sautenet, B, Manera, K, Craig, JC, Howell, M, Rutherford, C, Tong, A & SONG-Tx Life Participation Workshop Investigators 2019, 'Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology-kidney Transplantation Consensus Workshop Report', Transplantation, vol. 103, no. 6, pp. 1199-1205. https://doi.org/10.1097/TP.0000000000002476

TY - JOUR

T1 - Establishing a Core Outcome Measure for Life Participation

T2 - A Standardized Outcomes in Nephrology-kidney Transplantation Consensus Workshop Report

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 - SONG-Tx Life Participation Workshop Investigators

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

UR - http://purl.org/au-research/grants/NHMRC/1128564

UR - http://purl.org/au-research/grants/NHMRC/1092597

U2 - 10.1097/TP.0000000000002476

DO - 10.1097/TP.0000000000002476

M3 - Article

C2 - 30300284

AN - SCOPUS:85062344200

SN - 0041-1337

VL - 103

SP - 1199

EP - 1205

JO - Transplantation

JF - Transplantation

IS - 6

ER -

Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology-kidney Transplantation Consensus Workshop Report

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