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, Jonathan C. Craig, Charlotte Logeman, Aditi Sinha, Allison Dart, Allison A. Eddy, Chandana Guha, Debbie S. Gipson, Detlef Bockenhauer, Hui Kim Yap, Jaap Groothoff, Michael Zappitelli, Nicholas J.A. Webb, Stephen I. Alexander, Susan L. Furth, Susan Samuel, Alicia Neu, Andrea K. Viecelli, Angela Ju, Ankit SharmaEric H. Au, Hailey Desmond, Jenny I. Shen, Karine E. Manera, Karolis Azukaitis, Louese Dunn, Simon A. Carter, Talia Gutman, Yeoungjee Cho, Amanda Walker, Anna Francis, Cheryl Sanchez-Kazi, Joshua Kausman, Meghan Pearl, Nadine Benador, Shobha Sahney, Allison Tong, Abhjit Guha, Adaobi Solarin, Adriana Platona, Alexander Hamilton, Alice Woods-Barnard, Allison Eddy, Alyssa Karathanas, Amanda Baumgart, Amelia Fielding, Amelia LePage, Amelie Bernier-Jean, Amy Kelly, Ana Teixeira, Andrea Matus, Andrew Narva, Angela Yee Moon Wang, Anna Fielding, Anthony Meza, Aria Fielding, Armando Teixeira-Pinto, Arvind Bagga, Augustina Jankauskiene, Ayano Kelly, Barbara Gillespie, Benedicte Sautenet, Beth Vogt, Bethany Foster, Bradley Warady, Bradley Dixon, Braden Manns, Brenda Hemmelgarn, Brittney Bscardark, Brooklyn Romeo, Carlos Meza, Carter Brockett, Chanel Prestidge, Charmaine Green, Christy Perkins, Claus Peter Schmitt, Craig Fielding, Craig Settee, Daniel Sumpton, Daniel Meza, Darien Karathanas, David Harris, David Wheeler, David Hooper, Denis Geary, 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, 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, Hayley Perkins, Harrison Mitchell-Smith, Helen Coolican, Hong Xu, Ifeoma Anochie, Il Soo Ha, Ira Davis, Isaac Liu, Israel Samaniego, Jaime Machuca, James Machuca, Jasmijn Kerklaan, Jeff Brockett, Jenna Norton, Jens Goebel, Jia Rao, Jimmy Machuca, Jo Mitchell-Smith, Jo Watson, John Gill, Joseph T. Flynn, Joshua Samuels, Justine Bacchetta, Kaleb Yoder, 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, 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, Melissa Natatmadja, Melissa Brockett, Melvin Bonilla-Felix, Meredith Atkinson, Michel Baum, Michelle Rheault, Mignon McCulloch, Mina Matsuda-Abedini, Mini Michael, Mohammad Khan, Mohammad Salih, Mycah Ann Carlton, 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, 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, Silas Carlton, Simone Pearson, Simra Khan, Skyla Wilson, Sonia Sharma, Stephen Alexander, Stephen Marks, Stephen Cornish, Stuart Goldstein, Susan Mendley, Susan Lippincott, Symone Charles, Terri Mitchell-Smith, Tess Harris, Thorsten Vetter, Tiffany Carlton, Timothy Carlton, Uwe Querfeld, Valeria Saglimbene, Virginia Charles, Wim van Biesen, Wolfgang Winkelmayer, Yenissey Machuca, Yusuf Salih, Yo Han Anh, Zachary Perkins, Zeynab Salih

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)553-565
Number of pages13
JournalKidney international
Volume98
Issue number3
DOIs
StatePublished - Sep 1 2020

Keywords

  • children
  • chronic kidney disease
  • core outcomes set
  • dialysis
  • outcomes
  • patient-centered care
  • transplant
  • trials

ASJC Scopus subject areas

  • Nephrology

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