1. Establishing a Core Outcome Set for Peritoneal Dialysis: Report of the SONG-PD (Standardized Outcomes in Nephrology–Peritoneal Dialysis) Consensus Workshop
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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, and Université de Tours-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques
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Nephrology ,Delphi Technique ,[SDV]Life Sciences [q-bio] ,medicine.medical_treatment ,030232 urology & nephrology ,Psychological intervention ,Disease ,patient-centered care ,outcomes ,Outcome (game theory) ,Peritoneal dialysis (PD) ,law.invention ,0302 clinical medicine ,Randomized controlled trial ,law ,Outcome Assessment, Health Care ,technique survival ,Medicine ,PD failure ,030212 general & internal medicine ,Empowerment ,caregiver ,media_common ,cardiovascular disease (CVD) ,PD-related infection ,trials ,patient-reported outcome (PRO) ,3. Good health ,Research Design ,life participation ,Peritoneal Dialysis ,consensus workshop ,medicine.medical_specialty ,Consensus ,media_common.quotation_subject ,core outcome set ,Peritoneal dialysis ,03 medical and health sciences ,quality of life (QoL) ,nephrology research ,Internal medicine ,Humans ,Dialysis ,business.industry ,patient perspective ,mortality ,Family medicine ,trial design ,dialysis ,fatigue ,business - 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.
- Published
- 2020
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