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

Activities of Daily Living Consensus Health Status Humans Immunosuppressive Agents / adverse effects Kidney Failure, Chronic / diagnosis Kidney Transplantation / adverse effects Life Style Mental Health Patient Reported Outcome Measures Quality of Life Risk Factors Time Factors Treatment Outcome

Journal

Transplantation
ISSN: 1534-6080
Titre abrégé: Transplantation
Pays: United States
ID NLM: 0132144

Informations de publication

Date de publication:
06 2019
Historique:
pubmed: 10 10 2018
medline: 26 5 2020
entrez: 10 10 2018
Statut: ppublish

Résumé

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. 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. 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. 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.

Sections du résumé

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.

Identifiants

DOI: 10.1097/TP.0000000000002476 PMID: 30300284
pubmed: 30300284
doi: 10.1097/TP.0000000000002476
doi:

Substances chimiques

Immunosuppressive Agents 0

Types de publication

Consensus Development Conference Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1199-1205

Commentaires et corrections

Type : CommentIn

Auteurs

Angela Ju (A)

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.

Michelle A Josephson (MA)

Department of Medicine, The University of Chicago Medicine, Chicago, IL.

Zeeshan Butt (Z)

Departments of Medical Social Sciences, Surgery and Psychiatry & Behavioral sciences, Northwestern University, Evanston, IL.

Sheila Jowsey-Gregoire (S)

Department of Psychiatry & Psychology, Mayo Clinic, Jacksonville, FL.

Jane Tan (J)

Department of Medicine, Stanford University, Stanford, CA.

Quinetta Taylor (Q)

Standardised Outcomes in Nephrology (Patient Partner), Chicago, IL.

Kevin Fowler (K)

Kidney Health Initiative, Patient Family Partnership Council, Washington, DC.

Fabienne Dobbels (F)

Department of Public Health and Primary Care, KU Leuven, Belgium.

Fergus Caskey (F)

School of Social and Community Medicine, University of Bristol, Bristol, United Kingdom.

Vivekanand Jha (V)

The George Institute for Global Health, New Delhi, India.

Jayme Locke (J)

School of Medicine, University of Alabama at Birmingham, Birmingham, AL.

Greg Knoll (G)

Division of Nephrology, The Ottawa Hospital and University of Ottawa, Ottawa, Canada.

Curie Ahn (C)

Transplantation Center, Seoul National University Hospital, Seoul, South Korea.

Camilla S Hanson (CS)

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.

Benedicte Sautenet (B)

Department of Nephrology and Clinical Immunology, University Francois Rabelais, Tours Hospital, Tours, France.
INSERM, U1246, Tours, Franc Tours, France.

Karine Manera (K)

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.

Jonathan C Craig (JC)

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.

Martin Howell (M)

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.

Claudia Rutherford (C)

School of Psychology, The University of Sydney, Sydney, Australia.

Allison Tong (A)

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.

Paul Harden (P)

Carmel Hawley (C)

Hallvard Holdaas (H)

Ajay Israni (A)

Michelle Jesse (M)

Brenna Kane (B)

John Kanellis (J)

Bryce Kiberd (B)

Joseph Kim (J)

Chris Larsen (C)

Alan Leichtman (A)

Krista Lentine (K)

Andrew Malone (A)

Roslyn Mannon (R)

Rainer Oberbauer (R)

Rachel Patzer (R)

John Devin Peipert (JD)

Hai An Phan (HA)

Emilio Poggio (E)

Rihannon Reed (R)

John Scandling (J)

Ignatius Tang (I)

Chris Watson (C)

Daniel Contrares (D)

Patricia Contreras (P)

Daley Cross (D)

Egle Juodvalkis (E)

Den Koide (D)

Jinny Koide (J)

Adam Kozarewicz (A)

Laura Kozarewicz (L)

Richard Kozarewicz (R)

Andrea Koritala (A)

Elizabeth Lisiecki (E)

Christine Lipuma (C)

Margaret Lyman (M)

Robert Mueller (R)

Gloria Mueller (G)

Larry Noble (L)

Nancy Nolan (N)

Stephen Nolan (S)

Jim Thomas (J)

Lynda Urbancyzk (L)

James Zerante (J)

Susan Zerante (S)

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Classifications MeSH

questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Services de santé › Réadaptation › Activités de la vie quotidienne › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Phénomènes psychologiques › Processus mentaux › Pensée (activité mentale) › Prise de décision › Consensus › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Mesures épidémiologiques › Démographie › État de santé › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Actions chimiques et utilisations › Actions pharmacologiques › Effets physiologiques des médicaments › Facteurs immunologiques › Immunosuppresseurs › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › États, signes et symptômes pathologiques › Processus pathologiques › Caractéristiques de la maladie › Maladie chronique › Insuffisance rénale chronique › Défaillance rénale chronique › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Procédures de chirurgie opératoire › Procédures de chirurgie urogénitale › Procédures de chirurgie urologique › Transplantation rénale › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Comportement et mécanismes comportementaux › Mode de vie › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Caractéristiques de la population › Santé › Santé mentale › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Enquêtes sur les soins de santé › Mesures des résultats rapportés par les patients › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Mesures épidémiologiques › Démographie › État de santé › Qualité de vie › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Statistiques comme sujet › Probabilité › Risque › Facteurs de risque › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Phénomènes physiques › Temps › Facteurs temps › Establishing a Core Outcome Measure for Life...
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Qualité des soins de santé › Mécanismes d'évaluation des soins de santé › Évaluation des résultats et des processus en soins de santé › Évaluation de résultat (soins) › Résultat thérapeutique › Establishing a Core Outcome Measure for Life...