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Establishing a Core Outcome Set for Peritoneal Dialysis: Report of the SONG-PD (Standardized Outcomes in Nephrology–Peritoneal Dialysis) Consensus Workshop

Authors :
Karine E. Manera
David W. Johnson
Jonathan C. Craig
Jenny I. Shen
Talia Gutman
Yeoungjee Cho
Angela Yee-Moon Wang
Edwina A. Brown
Gillian Brunier
Jie Dong
Tony Dunning
Rajnish Mehrotra
Saraladevi Naicker
Roberto Pecoits-Filho
Jeffrey Perl
Martin Wilkie
Allison Tong
Adeera Levin
Adrian Liew
Alfonso Cueto Manzano
Ali Abu Alfa
Alicia Neu
Amanda Baumgart
Amelie Bernier-Jean
Amy Kelly
Ana Figueiredo
Andrea Matus
Andrea Viecelli
Angela Ju
Anjali Saxena
Ankit Sharma
Annie-Claire Nadeau-Fredette
Armando Teixeira-Pinto
Asher Mendelson
Ayano Kelly
Bak Leong Goh
Benedicte Sautenet
Braden Manns
Brenda Hemmelgarn
Bruce Robinson
Camilla Hanson
Catherine Cheung
Chandana Guha
Charlotte Logeman
Cheuk-Chun Szeto
Claudia Rutherford
Daniel Schwartz
Daniel Sumpton
David Johnson
David Wheeler
Edwina Brown
Emma O’Lone
Eric Au
Eric Goffin
Fred Finkelstein
Georgi Abraham
Greg Germino
Helen Hurst
Hideki Kawanishi
Htay Htay
Hui Kim Yap
Isaac Teitelbaum
Jenny Chen
Jenny Shen
Joanna Neumann
Joanne Bargman
Johann Morelle
Jonathan Craig
Kajiru Gad Kilonzo
Karen Yeates
Karine Manera
Karolis Azukaitis
Kim Linh Van
Louese Dunn
Mahesh Krishnan
Mark Lambie
Martin Howell
Martin Schreiber
Matthew Oliver
Mauricio Rafael Sanabria
Melissa Nataatmadja
Monika Lichodziejewska-Niemierko
Nancy Verdin
Neelam Mann
Neil Boudville
Nicole Evangelidis
Nicole Scholes-Robertson
Peter Blake
Peter Nourse
Peter Tugwell
Philip Kam-Tao Li
Richard McGee
Robert Quinn
Sally Crowe
Samaya Anumudu
Sarah Bernays
Sarala Naicker
Scott Wilson
Sharon Nessim
Sharon Teo
Simon A. Carter
Simon Davies
Soheli Ahmed Sweety
Ted Toffelmire
Vanita Jassal
Vivekanand Jha
Viviane Calice da Silva
Wim Van Biesen
Wolfgang Winkelmayer
Yasuhiko Ito
Yong-Lim Kim
Zeeshan Butt
MethodS in Patients-centered outcomes and HEalth ResEarch (SPHERE)
Université de Tours (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques
Université de Nantes (UN)-Université de Nantes (UN)
UCL - SSS/IREC/NEFR - Pôle de Néphrologie
UCL - (SLuc) Service de néphrologie
Université de Tours-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques
Source :
American Journal of Kidney Diseases, American Journal of Kidney Diseases, Elsevier, 2020, ⟨10.1053/j.ajkd.2019.09.017⟩, American journal of kidney diseases, Vol. 75, no. 3, p. 404-412 (2020)
Publication Year :
2020
Publisher :
Elsevier BV, 2020.

Abstract

International audience; Outcomes reported in randomized controlled trials in peritoneal dialysis (PD) are diverse, are measured inconsistently, and may not be important to patients, families, and clinicians. The Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) initiative aims to establish a core outcome set for trials in PD based on the shared priorities of all stakeholders. We convened an international SONG-PD stakeholder consensus workshop in May 2018 in Vancouver, Canada. Nineteen patients/caregivers and 51 health professionals attended. Participants discussed core outcome domains and implementation in trials in PD. Four themes relating to the formation of core outcome domains were identified: life participation as a main goal of PD, impact of fatigue, empowerment for preparation and planning, and separation of contributing factors from core factors. Considerations for implementation were identified: standardizing patient-reported outcomes, requiring a validated and feasible measure, simplicity of binary outcomes, responsiveness to interventions, and using positive terminology. All stakeholders supported inclusion of PD-related infection, cardiovascular disease, mortality, technique survival, and life participation as the core outcome domains for PD.

Details

ISSN :
02726386 and 15236838
Volume :
75
Database :
OpenAIRE
Journal :
American Journal of Kidney Diseases
Accession number :
edsair.doi.dedup.....4d6003354cf16e922f6f6c8cb841b22e