Abstract
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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 404-412 |
| Number of pages | 9 |
| Journal | American Journal of Kidney Diseases |
| Volume | 75 |
| Issue number | 3 |
| DOIs | |
| State | Published - Mar 1 2020 |
Keywords
- PD failure
- PD-related infection
- Peritoneal dialysis (PD)
- cardiovascular disease (CVD)
- caregiver
- consensus workshop
- core outcome set
- dialysis
- fatigue
- life participation
- mortality
- nephrology research
- outcomes
- patient perspective
- patient-centered care
- patient-reported outcome (PRO)
- quality of life (QoL)
- technique survival
- trial design
- trials
ASJC Scopus subject areas
- Nephrology
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In: American Journal of Kidney Diseases, Vol. 75, No. 3, 01.03.2020, p. 404-412.
Research output: Contribution to journal › Article › peer-review
}
TY - JOUR
T1 - Establishing a Core Outcome Set for Peritoneal Dialysis
T2 - Report of the SONG-PD (Standardized Outcomes in Nephrology–Peritoneal Dialysis) Consensus Workshop
AU - SONG-PD Workshop Investigators
AU - Manera, Karine E.
AU - Johnson, David W.
AU - Craig, Jonathan C.
AU - Shen, Jenny I.
AU - Gutman, Talia
AU - Cho, Yeoungjee
AU - Wang, Angela Yee Moon
AU - Brown, Edwina A.
AU - Brunier, Gillian
AU - Dong, Jie
AU - Dunning, Tony
AU - Mehrotra, Rajnish
AU - Naicker, Saraladevi
AU - Pecoits-Filho, Roberto
AU - Perl, Jeffrey
AU - Wilkie, Martin
AU - Tong, Allison
AU - Levin, Adeera
AU - Liew, Adrian
AU - Cueto Manzano, Alfonso
AU - Abu Alfa, Ali
AU - Neu, Alicia
AU - Baumgart, Amanda
AU - Bernier-Jean, Amelie
AU - Kelly, Amy
AU - Figueiredo, Ana
AU - Matus, Andrea
AU - Viecelli, Andrea
AU - Ju, Angela
AU - Saxena, Anjali
AU - Sharma, Ankit
AU - Nadeau-Fredette, Annie Claire
AU - Teixeira-Pinto, Armando
AU - Mendelson, Asher
AU - Goh, Bak Leong
AU - Sautenet, Benedicte
AU - Manns, Braden
AU - Hemmelgarn, Brenda
AU - Robinson, Bruce
AU - Hanson, Camilla
AU - Cheung, Catherine
AU - Guha, Chandana
AU - Logeman, Charlotte
AU - Szeto, Cheuk Chun
AU - Rutherford, Claudia
AU - Schwartz, Daniel
AU - Sumpton, Daniel
AU - Wheeler, David
AU - O'Lone, Emma
AU - Au, Eric
N1 - Funding Information: Health Professionals: Adeera Levina; Adrian Liewb; Alfonso Cueto Manzanoc; Ali Abu Alfad; Alicia Neue; Allison Tongf; Amanda Baumgartf; Amelie Bernier-Jeanf; Amy Kellyf; Ana Figueiredog; Andrea Matush; Andrea Viecellii; Angela Juf; Angela Yee-Moon Wangj; Anjali Saxenak; Ankit Sharmaf; Annie-Claire Nadeau-Fredettel; Armando Teixeira-Pintof; Asher Mendelsonm; Ayano Kellyn; Bak Leong Goho; Benedicte Sautenetp; Braden Mannsq; Brenda Hemmelgarnq; Bruce Robinsonr; Camilla Hansonf; Catherine Cheungs; Chandana Guhaf; Charlotte Logemanf; Cheuk-Chun Szetot; Claudia Rutherfordf; Daniel Schwartza; Daniel Sumptonf; David Johnson (Chair)i; David Wheeleru; Edwina Brownv; Emma O'Lonef; Eric Auf; Eric Goffinw; Fred Finkelsteinx; Georgi Abrahamy; Gillian Brunierz; Greg Germinoaa; Helen Hurstab; Hideki Kawanishiac; Htay Htayad; Hui Kim Yapae; Isaac Teitelbaumaf; Jeffrey Perlag; Jenny Chenah; Jenny Shenai; Jie Dongaj; Joanna Neumannak; Joanne Bargmanag; Johann Morelleal; Jonathan Craigam; Kajiru Gad Kilonzoan; Karen Yeatesao; Karine Maneraf; Karolis Azukaitisap; Kim Linh Vanf; Louese Dunnaq; Mahesh Krishnanar; Mark Lambieas; Martin Howellf; Martin Schreiberar; Martin Wilkieat; Matthew Oliverz; Mauricio Rafael Sanabriaau; Melissa Nataatmadjai; Monika Lichodziejewska-Niemierkoav; Nancy Verdinaw; Neelam Manns; Neil Boudvilleax; Nicole Evangelidisf; Nicole Scholes-Robertsonf; Peter Blakem; Peter Nourseay; Peter Tugwellaz; Philip Kam-Tao Lit; Rajnish Mehrotraba; Richard McGeef; Robert Quinnq; Roberto Pecoits-Filhobb; Sally Crowebc; Samaya Anumudubd; Sarah Bernaysf; Sarala Naickerbe; Scott Wilsonbf; Sharon Nessimbg; Sharon Teoae; Simon A. Carterf; Simon Daviesbh; Soheli Ahmed Sweetybi; Talia Gutmanf; Ted Toffelmirebj; Vanita Jassalag; Vivekanand Jhabk; Viviane Calice da Silvabl; Wim Van Biesenbm; Wolfgang Winkelmayerbd; Yasuhiko Itobn; Yeoungjee Choi; Yong-Lim Kimbo; Zeeshan Buttbp; aUniversity of British Columbia, CA; bTan Tock Seng Hospital, SG; cSalvador Zubirán National Institute of Health Sciences and Nutrition, MX; dAmerican University of Beirut, LB; eJohns Hopkins University School of Medicine, US; fThe University of Sydney, AU; gPontifical Catholic University of Rio Grande do Sul, BR; hThe Children's Hospital at Westmead, AU; iUniversity of Queensland, AU; jQueen Mary Hospital, The University of Hong Kong, HK; kStanford University, US; lHôpital Maisonneuve-Rosemont, CA; mWestern University, CA; nAustralian National University, AU; oSerdang Hospital, MY; pUniversity of Tours, FR; qUniversity of Calgary, CA; rArbor Research Collaborative for Health, US; sFraser Health Authority, CA; tChinese University of Hong Kong, HK; uUniversity College London, UK; vImperial College London, UK; wUniversité catholique de Louvain, BE; xBridgeport Hospital, US; yPondycherry Institute of Medical Sciences, IN; zSunnybrook Research Institute, CA; aaNational Institute of Diabetes and Digestive and Kidney Diseases, US; abManchester University Foundation Trust, UK; acTsuchiya General Hospital, JP; adSingapore General Hospital, SG; aeNational University of Singapore, SG; afUniversity of Colorado Hospital, US; agUniversity of Toronto, CA; ahPrince of Wales Hospital, AU; aiUniversity of California, US; ajPeking University, CN; akSatellite Healthcare, US; alCliniques universitaires Saint-Luc, BE; amFlinders University, AU; anKilimanjaro Christian Medical Centre, TZ; aoQueen's University and Kingston Health Sciences Centre, CA; apVilnius University, LT; aqUniversity of Sheffield, UK; arDaVita, US; asKeele University, UK; atNHS Sheffield Teaching Hospital, UK; auUniversidad De Los Andes, CO; avMedical University of Gdańsk, PL; awAlberta Health Services, CA; axUniversity of Western Australia, AU; ayRed Cross War Memorial Children's Hospital, ZA; azUniversity of Ottawa, CA; baUniversity of Washington, US; bbPontifícia Universidade Católica do Paraná, BR; bcCrowe Associates Ltd, UK; bdBaylor College of Medicine, US; beWits University, ZA; bfMonash University, AU; bgMcGill University, CA; bhUniversity Hospital of North Midlands, UK; biDhaka Medical College Hospital, BD; bjFresenius Medical Care, CA; bkThe George Institute for Global Health, IN; blUniversidade Católica de Pelotas, BR; bmUniversity of Ghent, BE; bnNagoya University, JP; boKyungpook National University School of Medicine, KR; bpNorthwestern University, US. Patients/Caregivers: Agnes Lau, HK; Allen Chi, CA; Ana Tepper, CA; Annette Spence, CA; Bruno Rossi, CA; Carol Wilcox, CA; Chris Coello, CA; Dave White, US; Denise Eilers, US; Derek Forfang, US; Elsie Meyers, CA; Gary Froats, CA; Gurjit Pawar, CA; Julie Yuen, CA; Joan Froats, CA; Lana Wong, CA; Larry Wilcox, CA; Leroy Spence, CA; Marilee Schelp, CA; Marjorie Lindo, CA; Nicole Jefferson, US; Nieltje Gedney, US; Patrick Gee, US; Rachel Rossi, CA; Sandford Schelp, CA; Sharon Kidwell, CA; Sheila Le Mottee, CA; Stanley Wong, CA; Tess Harris, UK; Tony & Sue-Ann Dunning, AU. Karine E. Manera, MIPH, David W. Johnson, PhD, Jonathan C. Craig, PhD, Jenny I. Shen, MD, Talia Gutman, MPH, Yeoungjee Cho, PhD, Angela Yee-Moon Wang, PhD, Edwina A. Brown, MD, Gillian Brunier, MScN, Jie Dong, PhD, Tony Dunning, Rajnish Mehrotra, MD, Saraladevi Naicker, PhD, Roberto Pecoits-Filho, PhD, Jeffrey Perl, MD, Martin Wilkie, MD, and Allison Tong, PhD. Dr Manera is supported by a National Health and Medical Research Council (NHMRC) Postgraduate Scholarship (APP1151343). Dr Tong is supported by an NHMRC Fellowship (APP1106716). Dr Johnson is supported by an NHMRC Practitioner Fellowship (APP1117534). Dr Shen is supported by grants K23DK103972 from the National Institutes of Health (NIH)-National Institute of Diabetes and Digestive and Kidney Diseases (NIIDDK). Dr Cho is supported by an NHMRC Early Career Fellowship (APP1126256). This study was supported by the International Society for Peritoneal Dialysis (ISPD). The funding organizations had no role in the preparation, review, or approval of the manuscript. Dr Mehrotra serves as a consultant to Zytoprotec. The remaining authors declare that they have no relevant financial interests. The authors thank the ISPD for supporting the SONG-PD consensus workshop at the 17th Congress of the ISPD. The following people attended the SONG-PD consensus workshop: Adrian Liew, Agnes Lau, Ali Abu Alfa, Alicia Neu, Allen Chi, Allison Tong, Ana Figueiredo, Ana Tepper, Angela Yee-Moon Wang, Anjali Saxena, Annette Spence, Annie-Claire Nadeau-Fredette, Asher Mendelson, Bruce Robinson, Carol Wilcox, Catherine Cheung, Cheuk-Chun Szeto, Chris Coello, David Johnson, Edwina Brown, Eric Goffin, Gary Froats, Gillian Brunier, Gurjit Pawar, Helen Hurst, Hideki Kawanishi, Htay Htay, Hui Kim Yap, Isaac Teitelbaum, Jeffrey Perl, Jenny Chen, Jenny Shen, Joan Froats, Joanna Neumann, Joanne Bargman, Johann Morelle, Karine Manera, Lana Wong, Larry Wilcox, Marilee Schelp, Marjorie Lindo, Mark Lambie, Martin Schreiber, Martin Wilkie, Matthew Oliver, Melissa Nataatmadja, Monika Lichodziejewska-Niemierko, Neelam Mann, Neil Boudville, Nicole Jefferson, Nieltje Gedney, Peter Blake, Philip Kam-Tao Li, Rajnish Mehrotra, Robert Quinn, Roberto Pecoits-Filho, Sandford Schelp, Sharon Kidwell, Sharon Nessim, Sharon Teo, Sheila Le Mottee, Simon Davies, Soheli Ahmed Sweety, Stanley Wong, Talia Gutman, Ted Toffelmire, Viviane Calice da Silva, Yasuhiko Ito, Yong-Lim Kim, Yeoungjee Cho. Received July 23, 2019. Evaluated by 2 external peer reviewers, with direct editorial input from an Associate Editor and a Deputy Editor. Accepted in revised form September 25, 2019. Funding Information: Dr Manera is supported by a National Health and Medical Research Council (NHMRC) Postgraduate Scholarship ( APP1151343 ). Dr Tong is supported by an NHMRC Fellowship ( APP1106716 ). Dr Johnson is supported by an NHMRC Practitioner Fellowship ( APP1117534 ). Dr Shen is supported by grants K23DK103972 from the National Institutes of Health (NIH)- National Institute of Diabetes and Digestive and Kidney Diseases (NIIDDK). Dr Cho is supported by an NHMRC Early Career Fellowship ( APP1126256 ). This study was supported by the International Society for Peritoneal Dialysis (ISPD). The funding organizations had no role in the preparation, review, or approval of the manuscript. Publisher Copyright: © 2019 National Kidney Foundation, Inc.
PY - 2020/3/1
Y1 - 2020/3/1
N2 - 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.
AB - 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.
KW - PD failure
KW - PD-related infection
KW - Peritoneal dialysis (PD)
KW - cardiovascular disease (CVD)
KW - caregiver
KW - consensus workshop
KW - core outcome set
KW - dialysis
KW - fatigue
KW - life participation
KW - mortality
KW - nephrology research
KW - outcomes
KW - patient perspective
KW - patient-centered care
KW - patient-reported outcome (PRO)
KW - quality of life (QoL)
KW - technique survival
KW - trial design
KW - trials
UR - http://www.scopus.com/inward/record.url?scp=85078019175&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85078019175&partnerID=8YFLogxK
U2 - 10.1053/j.ajkd.2019.09.017
DO - 10.1053/j.ajkd.2019.09.017
M3 - Article
C2 - 31955922
AN - SCOPUS:85078019175
SN - 0272-6386
VL - 75
SP - 404
EP - 412
JO - American Journal of Kidney Diseases
JF - American Journal of Kidney Diseases
IS - 3
ER -