Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops

Camilla S Hanson¹, Jonathan C Craig², Charlotte Logeman³, Aditi Sinha⁴, Allison Dart⁵, Allison A Eddy⁶, Chandana Guha³, Debbie S Gipson⁷, Detlef Bockenhauer⁸, Hui-Kim Yap⁹, Jaap Groothoff¹⁰, Michael Zappitelli¹¹, Nicholas J A Webb¹², Stephen I Alexander¹³, Susan L Furth¹⁴, Susan Samuel¹⁵, Alicia Neu¹⁶, Andrea K Viecelli¹⁷, Angela Ju³, Ankit Sharma³, Eric H Au³, Hailey Desmond⁷, Jenny I Shen¹⁸, Karine E Manera³, Karolis Azukaitis¹⁹, Louese Dunn²⁰, Simon A Carter²¹, Talia Gutman³, Yeoungjee Cho¹⁷, Amanda Walker²², Anna Francis²³, Cheryl Sanchez-Kazi²⁴, Joshua Kausman²⁵, Meghan Pearl²⁶, Nadine Benador²⁷, Shobha Sahney²⁶, Allison Tong³; SONG-Kids consensus workshops investigators

Collaborators, Affiliations

Collaborators

SONG-Kids consensus workshops investigators:
Abhjit Guha, Adaobi Solarin, Aditi Sinha, Adriana Platona, Alexander Hamilton, Alice Woods-Barnard, Alicia Neu, Allison Tong, Allison Dart, Allison Eddy, Alyssa Karathanas, Amanda Baumgart, Amelia Fielding, Amelia LePage, Amelie Bernier-Jean, Amy Kelly, Ana Teixeira, Andrea Viecelli, Andrea Matus, Andrew Narva, Angela Ju, Angela Yee-Moon Wang, Ankit Sharma, Anna Fielding, Anna Francis, Anthony Meza, Aria Fielding, Armando Teixeira-Pinto, Arvind Bagga, Augustina Jankauskienė, Ayano Kelly, Barbara Gillespie, Benedicte Sautenet, Beth Vogt, Bethany Foster, Bradley Warady, Bradley Dixon, Braden Manns, Brenda Hemmelgarn, Brittney Bscardark, Brooklyn Romeo, Camilla Hanson, Carlos Meza, Carter Brockett, Chandana Guha, Chanel Prestidge, Charlotte Logeman, Charmaine Green, Cheryl Sanchez-Kazi, Christy Perkins, Claus Peter Schmitt, Craig Fielding, Craig Settee, Daniel Sumpton, Daniel Meza, Darien Karathanas, David Harris, David Wheeler, David Hooper, Debbie Gipson, Denis Geary, Detlef Bockenhauer, Dieter Haffner, Djalila Mekahli, Dorota Drozdz, Ed Romeo, Elaine Ku, Elaine Urbina, Elena Levtchenko, Elena Balovlenkov, Elisabeth Hodson, Emily Morales, Emma O'Lone, Emma Machuca, Emmah Carlton, Eric Au, Erin Olver, Estefania Morales, Fatima Mirza, Fiona Mackie, Francesca Tentori, Franz Schaefer, Gail Higgins, Georges Deschenes, Georgia Plunkett, Gerilyn Yoder, Germaine Wong, Giselle Morales, Greg Germino, Hailey Desmond, Hayley Perkins, Harrison Mitchell-Smith, Helen Coolican, Hong Xu, Hui-Kim Yap, Ifeoma Anochie, Il-Soo Ha, Ira Davis, Isaac Liu, Israel Samaniego, Jaap Groothoff, Jaime Machuca, James Machuca, Jasmijn Kerklaan, Jeff Brockett, Jenna Norton, Jenny Shen, Jens Goebel, Jia Rao, Jimmy Machuca, Jo Mitchell-Smith, Jo Watson, John Gill, Jonathan Craig, Joseph T Flynn, Joshua Kausman, Joshua Samuels, Justine Bacchetta, Kaleb Yoder, Karine Manera, Karolis Azukaitis, Katherine Twombley, Kelly-Ann McMichael, Kenji Ishikura, Kennedy Romeo, Kevin Settee, Kim Linh Van, Lachlan McMichael, Lany Trinh, Larry Greenbaum, Laura Sanchez, Leo Fielding, Lesley Rees, Leslie Lippincott, Levi Mejia-Saldivar, Lidia Saldivar, Lisa Guay-Woodford, Lizett Samaniego, Lorraine Hamiwka, Lorraine Bell, Louese Dunn, Lucinda Barry, Luke Macauley, Luke Holmes, Madelynn Karathanas, Madison Mitchell-Smith, Mandy Walker, Manuel Benavides, Marcello Tonelli, Maria Ferris, Marina Vivarelli, Mark Wolfenden, Martin Howell, Martin Christian, Martin Schreiber, Marva Moxey-Mims, Mary Leonard, Matthew Karathanas, Meghan Pearl, Melissa Natatmadja, Melissa Brockett, Melvin Bonilla-Felix, Meredith Atkinson, Michael Zappitelli, Michel Baum, Michelle Rheault, Mignon McCulloch, Mina Matsuda-Abedini, Mini Michael, Mohammad Khan, Mohammad Salih, Mycah Ann Carlton, Nadine Benador, Ngairre Plunkett, Nick Webb, Nicki Scholes-Robertson, Nicolas Larkins, Nicole Evangelidis, Nigel Yoder, Norma Meza, Paige Olver, Paiyton Carlton, Patrick Brophy, Peter Tugwell, Pierre Cochat, Rajnish Mehrotra, Raphael Wolfenden, Rasheed Gbadegesin, Raymond Benavides, Rebecca Johnson, Ricardo Morales Jr, Richard McGee, Richard Fish, Robert Gardos, Roberto Pecoits-Filho, Rocio Vargas, Rodolfo Saldivar, Rosanna Coppo, Rukshana Shroff, Rupesh Raina, Sajeda Youssouf, Sally Crowe, Samaya Anumudu, Samuel Chan, Sarah Baldacchino, Scott Wenderfer, Sebastian Wolfenden, Selah Carlton, Shanna Sutton, Shannon Murphy, Sharon Teo, Sheyma Salih, Shobha Sahney, Silas Carlton, Simon Carter, Simone Pearson, Simra Khan, Skyla Wilson, Sonia Sharma, Stephen Alexander, Stephen Marks, Stephen Cornish, Stuart Goldstein, Susan Samuel, Susan Furth, Susan Mendley, Susan Lippincott, Symone Charles, Talia Gutman, Terri Mitchell-Smith, Tess Harris, Thorsten Vetter, Tiffany Carlton, Timothy Carlton, Uwe Querfeld, Valeria Saglimbene, Virginia Charles, Wim van Biesen, Wolfgang Winkelmayer, Yenissey Machuca, Yeoungjee Cho, Yusuf Salih, Yo Han Anh, Zachary Perkins, Zeynab Salih

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia. Electronic address: camilla.hanson@sydney.edu.au.
² College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
³ Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
⁴ Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India.
⁵ Department of Pediatrics and Child Health, The Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, Manitoba, Canada.
⁶ Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Canada.
⁷ Division of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.
⁸ University College London Department of Renal Medicine, Great Ormond Street Hospital for Children, National Health Service Foundation Trust, London, UK.
⁹ Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
¹⁰ Department of Pediatric Nephrology, Emma Children's Hospital Academic Medical Center, Amsterdam, The Netherlands.
¹¹ Department of Nephrology, SickKids, Toronto, Ontario, Canada.
¹² Department of Paediatric Nephrology and National Institute for Health Research/Wellcome Trust Clinical Research Facility University of Manchester, Manchester Academic Health Science Centre, Royal Manchester Children's Hospital, Manchester, UK.
¹³ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
¹⁴ Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁵ Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Alberta, Canada.
¹⁶ Division of Pediatric Nephrology, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
¹⁷ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
¹⁸ Division of Nephrology and Hypertension, Lundquist Institute at Harbor-University of California Los Angeles Medical Center, Torrance, California, USA.
¹⁹ Center of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
²⁰ Sheffield Teaching Hospitals, National Health Service Foundation Trust, Sheffield, UK.
²¹ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia; Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia.
²² Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia; Department of Pediatrics, University of Melbourne, Melbourne, Victoria, Australia.
²³ Child and Adolescent Renal Service, Queensland Children's Hospital, Brisbane, Queensland, Australia.
²⁴ Department of Pediatrics, Loma Linda University Children's Hospital, Loma Linda, California, USA.
²⁵ Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia.
²⁶ Department of Pediatrics, Division of Nephrology, University of California Los Angeles, David Geffen School of Medicine at University of California Los Angeles, Los Angeles, California, USA.
²⁷ Rady Children's Hospital, University of California at San Diego, San Diego, California, USA.

PMID: 32628942
DOI: 10.1016/j.kint.2020.05.054

Free article

Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops

Camilla S Hanson et al. Kidney Int. 2020 Sep.

Free article

. 2020 Sep;98(3):553-565.

doi: 10.1016/j.kint.2020.05.054. Epub 2020 Jul 4.

Authors

Collaborators

SONG-Kids consensus workshops investigators:
Abhjit Guha, Adaobi Solarin, Aditi Sinha, Adriana Platona, Alexander Hamilton, Alice Woods-Barnard, Alicia Neu, Allison Tong, Allison Dart, Allison Eddy, Alyssa Karathanas, Amanda Baumgart, Amelia Fielding, Amelia LePage, Amelie Bernier-Jean, Amy Kelly, Ana Teixeira, Andrea Viecelli, Andrea Matus, Andrew Narva, Angela Ju, Angela Yee-Moon Wang, Ankit Sharma, Anna Fielding, Anna Francis, Anthony Meza, Aria Fielding, Armando Teixeira-Pinto, Arvind Bagga, Augustina Jankauskienė, Ayano Kelly, Barbara Gillespie, Benedicte Sautenet, Beth Vogt, Bethany Foster, Bradley Warady, Bradley Dixon, Braden Manns, Brenda Hemmelgarn, Brittney Bscardark, Brooklyn Romeo, Camilla Hanson, Carlos Meza, Carter Brockett, Chandana Guha, Chanel Prestidge, Charlotte Logeman, Charmaine Green, Cheryl Sanchez-Kazi, Christy Perkins, Claus Peter Schmitt, Craig Fielding, Craig Settee, Daniel Sumpton, Daniel Meza, Darien Karathanas, David Harris, David Wheeler, David Hooper, Debbie Gipson, Denis Geary, Detlef Bockenhauer, Dieter Haffner, Djalila Mekahli, Dorota Drozdz, Ed Romeo, Elaine Ku, Elaine Urbina, Elena Levtchenko, Elena Balovlenkov, Elisabeth Hodson, Emily Morales, Emma O'Lone, Emma Machuca, Emmah Carlton, Eric Au, Erin Olver, Estefania Morales, Fatima Mirza, Fiona Mackie, Francesca Tentori, Franz Schaefer, Gail Higgins, Georges Deschenes, Georgia Plunkett, Gerilyn Yoder, Germaine Wong, Giselle Morales, Greg Germino, Hailey Desmond, Hayley Perkins, Harrison Mitchell-Smith, Helen Coolican, Hong Xu, Hui-Kim Yap, Ifeoma Anochie, Il-Soo Ha, Ira Davis, Isaac Liu, Israel Samaniego, Jaap Groothoff, Jaime Machuca, James Machuca, Jasmijn Kerklaan, Jeff Brockett, Jenna Norton, Jenny Shen, Jens Goebel, Jia Rao, Jimmy Machuca, Jo Mitchell-Smith, Jo Watson, John Gill, Jonathan Craig, Joseph T Flynn, Joshua Kausman, Joshua Samuels, Justine Bacchetta, Kaleb Yoder, Karine Manera, Karolis Azukaitis, Katherine Twombley, Kelly-Ann McMichael, Kenji Ishikura, Kennedy Romeo, Kevin Settee, Kim Linh Van, Lachlan McMichael, Lany Trinh, Larry Greenbaum, Laura Sanchez, Leo Fielding, Lesley Rees, Leslie Lippincott, Levi Mejia-Saldivar, Lidia Saldivar, Lisa Guay-Woodford, Lizett Samaniego, Lorraine Hamiwka, Lorraine Bell, Louese Dunn, Lucinda Barry, Luke Macauley, Luke Holmes, Madelynn Karathanas, Madison Mitchell-Smith, Mandy Walker, Manuel Benavides, Marcello Tonelli, Maria Ferris, Marina Vivarelli, Mark Wolfenden, Martin Howell, Martin Christian, Martin Schreiber, Marva Moxey-Mims, Mary Leonard, Matthew Karathanas, Meghan Pearl, Melissa Natatmadja, Melissa Brockett, Melvin Bonilla-Felix, Meredith Atkinson, Michael Zappitelli, Michel Baum, Michelle Rheault, Mignon McCulloch, Mina Matsuda-Abedini, Mini Michael, Mohammad Khan, Mohammad Salih, Mycah Ann Carlton, Nadine Benador, Ngairre Plunkett, Nick Webb, Nicki Scholes-Robertson, Nicolas Larkins, Nicole Evangelidis, Nigel Yoder, Norma Meza, Paige Olver, Paiyton Carlton, Patrick Brophy, Peter Tugwell, Pierre Cochat, Rajnish Mehrotra, Raphael Wolfenden, Rasheed Gbadegesin, Raymond Benavides, Rebecca Johnson, Ricardo Morales Jr, Richard McGee, Richard Fish, Robert Gardos, Roberto Pecoits-Filho, Rocio Vargas, Rodolfo Saldivar, Rosanna Coppo, Rukshana Shroff, Rupesh Raina, Sajeda Youssouf, Sally Crowe, Samaya Anumudu, Samuel Chan, Sarah Baldacchino, Scott Wenderfer, Sebastian Wolfenden, Selah Carlton, Shanna Sutton, Shannon Murphy, Sharon Teo, Sheyma Salih, Shobha Sahney, Silas Carlton, Simon Carter, Simone Pearson, Simra Khan, Skyla Wilson, Sonia Sharma, Stephen Alexander, Stephen Marks, Stephen Cornish, Stuart Goldstein, Susan Samuel, Susan Furth, Susan Mendley, Susan Lippincott, Symone Charles, Talia Gutman, Terri Mitchell-Smith, Tess Harris, Thorsten Vetter, Tiffany Carlton, Timothy Carlton, Uwe Querfeld, Valeria Saglimbene, Virginia Charles, Wim van Biesen, Wolfgang Winkelmayer, Yenissey Machuca, Yeoungjee Cho, Yusuf Salih, Yo Han Anh, Zachary Perkins, Zeynab Salih

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia. Electronic address: camilla.hanson@sydney.edu.au.
² College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
³ Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
⁴ Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India.
⁵ Department of Pediatrics and Child Health, The Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, Manitoba, Canada.
⁶ Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Canada.
⁷ Division of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.
⁸ University College London Department of Renal Medicine, Great Ormond Street Hospital for Children, National Health Service Foundation Trust, London, UK.
⁹ Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
¹⁰ Department of Pediatric Nephrology, Emma Children's Hospital Academic Medical Center, Amsterdam, The Netherlands.
¹¹ Department of Nephrology, SickKids, Toronto, Ontario, Canada.
¹² Department of Paediatric Nephrology and National Institute for Health Research/Wellcome Trust Clinical Research Facility University of Manchester, Manchester Academic Health Science Centre, Royal Manchester Children's Hospital, Manchester, UK.
¹³ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
¹⁴ Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁵ Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Alberta, Canada.
¹⁶ Division of Pediatric Nephrology, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
¹⁷ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
¹⁸ Division of Nephrology and Hypertension, Lundquist Institute at Harbor-University of California Los Angeles Medical Center, Torrance, California, USA.
¹⁹ Center of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
²⁰ Sheffield Teaching Hospitals, National Health Service Foundation Trust, Sheffield, UK.
²¹ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia; Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia.
²² Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia; Department of Pediatrics, University of Melbourne, Melbourne, Victoria, Australia.
²³ Child and Adolescent Renal Service, Queensland Children's Hospital, Brisbane, Queensland, Australia.
²⁴ Department of Pediatrics, Loma Linda University Children's Hospital, Loma Linda, California, USA.
²⁵ Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia.
²⁶ Department of Pediatrics, Division of Nephrology, University of California Los Angeles, David Geffen School of Medicine at University of California Los Angeles, Los Angeles, California, USA.
²⁷ Rady Children's Hospital, University of California at San Diego, San Diego, California, USA.

PMID: 32628942
DOI: 10.1016/j.kint.2020.05.054

Abstract

Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.

Keywords: children; chronic kidney disease; core outcomes set; dialysis; outcomes; patient-centered care; transplant; trials.

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Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops

Collaborators

Affiliations

Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops

Authors

Collaborators

Affiliations

Abstract

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Research Materials