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

Jonathan Craig; Charlotte Logeman; Aditi Sinha; Allison Dart; Allison Eddy; Chandana Guha; Debbie S. Gipson; Detlef Bockenhauer; Hui Kim Yap; Jaap Groothoff; Michael Zappitelli; Nicholas J.A. Webb; Stephen I. Alexander; Susan Furth; Susan Samuel; Alicia Neu; Andrea Viecelli; Angela Ju; Ankit Sharma; Eric H. Au; Hailey Desmond; Jenny I. Shen; Karine 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; SONG-Kids consensus workshops investigators; Nicki Scholes-Robertson

doi:10.1016/j.kint.2020.05.054

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

Jonathan Craig, Charlotte Logeman, Aditi Sinha, Allison Dart, Allison Eddy, Chandana Guha, Debbie S. Gipson, Detlef Bockenhauer, Hui Kim Yap, Jaap Groothoff, Michael Zappitelli, Nicholas J.A. Webb, Stephen I. Alexander, Susan Furth, Susan Samuel, Alicia Neu, Andrea Viecelli, Angela Ju, Ankit Sharma, Eric H. AuHailey Desmond, Jenny I. Shen, Karine 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, SONG-Kids consensus workshops investigators, Nicki Scholes-Robertson

College of Medicine and Public Health

Research output: Contribution to journal › Article › peer-review

44 Citations (Scopus)

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 language	English
Pages (from-to)	553-565
Number of pages	13
Journal	Kidney International
Volume	98
Issue number	3
DOIs	https://doi.org/10.1016/j.kint.2020.05.054
Publication status	Published - 1 Sep 2020

Keywords

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

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10.1016/j.kint.2020.05.054Licence: In Copyright

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Craig, J., Logeman, C., Sinha, A., Dart, A., Eddy, A., Guha, C., Gipson, D. S., Bockenhauer, D., Yap, H. K., Groothoff, J., Zappitelli, M., Webb, N. J. A., Alexander, S. I., Furth, S., Samuel, S., Neu, A., Viecelli, A., Ju, A., Sharma, A., ... Scholes-Robertson, N. (2020). Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops. Kidney International, 98(3), 553-565. https://doi.org/10.1016/j.kint.2020.05.054

@article{5602a8ed46184b3e9e28513243ad01be,

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

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",

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

year = "2020",

month = sep,

day = "1",

doi = "10.1016/j.kint.2020.05.054",

language = "English",

volume = "98",

pages = "553--565",

journal = "Kidney International",

issn = "0085-2538",

publisher = "Kidney International",

number = "3",

}

Craig, J, Logeman, C, Sinha, A, Dart, A, Eddy, A, Guha, C, Gipson, DS, Bockenhauer, D, Yap, HK, Groothoff, J, Zappitelli, M, Webb, NJA, Alexander, SI, Furth, S, Samuel, S, Neu, A, Viecelli, A, Ju, A, Sharma, A, Au, EH, Desmond, H, Shen, JI, Manera, K, Azukaitis, K, Dunn, L, Carter, SA, Gutman, T, Cho, Y, Walker, A, Francis, A, Sanchez-Kazi, C, Kausman, J, Pearl, M, Benador, N, Sahney, S, Tong, A, SONG-Kids consensus workshops investigators & Scholes-Robertson, N 2020, 'Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops', Kidney International, vol. 98, no. 3, pp. 553-565. https://doi.org/10.1016/j.kint.2020.05.054

TY - JOUR

T1 - Establishing core outcome domains in pediatric kidney disease

T2 - report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

AU - Hanson, Camilla

AU - Craig, Jonathan

AU - Logeman, Charlotte

AU - Sinha, Aditi

AU - Dart, Allison

AU - Eddy, Allison

AU - Guha, Chandana

AU - Gipson, Debbie S.

AU - Bockenhauer, Detlef

AU - Yap, Hui Kim

AU - Groothoff, Jaap

AU - Zappitelli, Michael

AU - Webb, Nicholas J.A.

AU - Alexander, Stephen I.

AU - Furth, Susan

AU - Samuel, Susan

AU - Neu, Alicia

AU - Viecelli, Andrea

AU - Ju, Angela

AU - Sharma, Ankit

AU - Au, Eric H.

AU - Desmond, Hailey

AU - Shen, Jenny I.

AU - Manera, Karine

AU - Azukaitis, Karolis

AU - Dunn, Louese

AU - Carter, Simon A.

AU - Gutman, Talia

AU - Cho, Yeoungjee

AU - Walker, Amanda

AU - Francis, Anna

AU - Sanchez-Kazi, Cheryl

AU - Kausman, Joshua

AU - Pearl, Meghan

AU - Benador, Nadine

AU - Sahney, Shobha

AU - Tong, Allison

AU - SONG-Kids consensus workshops investigators

AU - Guha, Abhjit

AU - Solarin, Adaobi

AU - Platona, Adriana

AU - Hamilton, Alexander

AU - Woods-Barnard, Alice

AU - Karathanas, Alyssa

AU - Baumgart, Amanda

AU - Fielding, Amelia

AU - LePage, Amelia

AU - Bernier-Jean, Amelie

AU - Kelly, Amy

AU - Teixeira, Ana

AU - Matus, Andrea

AU - Narva, Andrew

AU - Wang, Angela Yee Moon

AU - Fielding, Anna

AU - Meza, Anthony

AU - Fielding, Aria

AU - Teixeira-Pinto, Armando

AU - Bagga, Arvind

AU - Jankauskienė, Augustina

AU - Kelly, Ayano

AU - Gillespie, Barbara

AU - Sautenet, Benedicte

AU - Vogt, Beth

AU - Foster, Bethany

AU - Warady, Bradley

AU - Dixon, Bradley

AU - Manns, Braden

AU - Hemmelgarn, Brenda

AU - Bscardark, Brittney

AU - Romeo, Brooklyn

AU - Hanson, Camilla

AU - Meza, Carlos

AU - Brockett, Carter

AU - Prestidge, Chanel

AU - Green, Charmaine

AU - Perkins, Christy

AU - Schmitt, Claus Peter

AU - Fielding, Craig

AU - Settee, Craig

AU - Sumpton, Daniel

AU - Meza, Daniel

AU - Karathanas, Darien

AU - Harris, David

AU - Wheeler, David

AU - Hooper, David

AU - Geary, Denis

AU - Haffner, Dieter

AU - Mekahli, Djalila

AU - Drozdz, Dorota

AU - Romeo, Ed

AU - Ku, Elaine

AU - Urbina, Elaine

AU - Levtchenko, Elena

AU - Balovlenkov, Elena

AU - Hodson, Elisabeth

AU - Morales, Emily

AU - O'Lone, Emma

AU - Machuca, Emma

AU - Carlton, Emmah

AU - Olver, Erin

AU - Morales, Estefania

AU - Mirza, Fatima

AU - Mackie, Fiona

AU - Tentori, Francesca

AU - Schaefer, Franz

AU - Higgins, Gail

AU - Deschenes, Georges

AU - Plunkett, Georgia

AU - Yoder, Gerilyn

AU - Wong, Germaine

AU - Morales, Giselle

AU - Germino, Greg

AU - Perkins, Hayley

AU - Mitchell-Smith, Harrison

AU - Coolican, Helen

AU - Xu, Hong

AU - Anochie, Ifeoma

AU - Ha, Il Soo

AU - Davis, Ira

AU - Liu, Isaac

AU - Samaniego, Israel

AU - Machuca, Jaime

AU - Machuca, James

AU - Kerklaan, Jasmijn

AU - Brockett, Jeff

AU - Norton, Jenna

AU - Shen, Jenny

AU - Goebel, Jens

AU - Rao, Jia

AU - Machuca, Jimmy

AU - Mitchell-Smith, Jo

AU - Watson, Jo

AU - Gill, John

AU - Flynn, Joseph T.

AU - Samuels, Joshua

AU - Bacchetta, Justine

AU - Yoder, Kaleb

AU - Twombley, Katherine

AU - McMichael, Kelly Ann

AU - Ishikura, Kenji

AU - Romeo, Kennedy

AU - Settee, Kevin

AU - Van, Kim Linh

AU - McMichael, Lachlan

AU - Trinh, Lany

AU - Greenbaum, Larry

AU - Sanchez, Laura

AU - Fielding, Leo

AU - Rees, Lesley

AU - Lippincott, Leslie

AU - Mejia-Saldivar, Levi

AU - Saldivar, Lidia

AU - Guay-Woodford, Lisa

AU - Samaniego, Lizett

AU - Hamiwka, Lorraine

AU - Bell, Lorraine

AU - Barry, Lucinda

AU - Macauley, Luke

AU - Holmes, Luke

AU - Karathanas, Madelynn

AU - Mitchell-Smith, Madison

AU - Walker, Mandy

AU - Benavides, Manuel

AU - Tonelli, Marcello

AU - Ferris, Maria

AU - Vivarelli, Marina

AU - Wolfenden, Mark

AU - Howell, Martin

AU - Christian, Martin

AU - Schreiber, Martin

AU - Moxey-Mims, Marva

AU - Leonard, Mary

AU - Karathanas, Matthew

AU - Natatmadja, Melissa

AU - Brockett, Melissa

AU - Bonilla-Felix, Melvin

AU - Atkinson, Meredith

AU - Baum, Michel

AU - Rheault, Michelle

AU - McCulloch, Mignon

AU - Matsuda-Abedini, Mina

AU - Michael, Mini

AU - Khan, Mohammad

AU - Salih, Mohammad

AU - Carlton, Mycah Ann

AU - Plunkett, Ngairre

AU - Webb, Nick

AU - Scholes-Robertson, Nicki

AU - Larkins, Nicolas

AU - Evangelidis, Nicole

AU - Yoder, Nigel

AU - Meza, Norma

AU - Olver, Paige

AU - Carlton, Paiyton

AU - Brophy, Patrick

AU - Tugwell, Peter

AU - Cochat, Pierre

AU - Mehrotra, Rajnish

AU - Wolfenden, Raphael

AU - Gbadegesin, Rasheed

AU - Benavides, Raymond

AU - Johnson, Rebecca

AU - Morales, Ricardo

AU - McGee, Richard

AU - Fish, Richard

AU - Gardos, Robert

AU - Pecoits-Filho, Roberto

AU - Vargas, Rocio

AU - Saldivar, Rodolfo

AU - Coppo, Rosanna

AU - Shroff, Rukshana

AU - Raina, Rupesh

AU - Youssouf, Sajeda

AU - Crowe, Sally

AU - Anumudu, Samaya

AU - Chan, Samuel

AU - Baldacchino, Sarah

AU - Wenderfer, Scott

AU - Wolfenden, Sebastian

AU - Carlton, Selah

AU - Sutton, Shanna

AU - Murphy, Shannon

AU - Teo, Sharon

AU - Salih, Sheyma

AU - Carlton, Silas

AU - Carter, Simon

AU - Pearson, Simone

AU - Khan, Simra

AU - Wilson, Skyla

AU - Sharma, Sonia

AU - Alexander, Stephen

AU - Marks, Stephen

AU - Cornish, Stephen

AU - Goldstein, Stuart

AU - Mendley, Susan

AU - Lippincott, Susan

AU - Charles, Symone

AU - Mitchell-Smith, Terri

AU - Harris, Tess

AU - Vetter, Thorsten

AU - Carlton, Tiffany

AU - Carlton, Timothy

AU - Querfeld, Uwe

AU - Saglimbene, Valeria

PY - 2020/9/1

Y1 - 2020/9/1

N2 - 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.

AB - 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.

KW - children

KW - chronic kidney disease

KW - core outcomes set

KW - dialysis

KW - outcomes

KW - patient-centered care

KW - transplant

KW - trials

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UR - http://purl.org/au-research/grants/NHMRC/1092957

UR - http://purl.org/au-research/grants/NHMRC/1106716

UR - http://purl.org/au-research/grants/NHMRC/1168994

UR - http://purl.org/au-research/grants/NHMRC/1168606

UR - http://purl.org/au-research/grants/NHMRC/1169149

U2 - 10.1016/j.kint.2020.05.054

DO - 10.1016/j.kint.2020.05.054

M3 - Article

C2 - 32628942

AN - SCOPUS:85088934417

VL - 98

SP - 553

EP - 565

JO - Kidney International

JF - Kidney International

SN - 0085-2538

IS - 3

ER -

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

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