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 (US) |
|---|---|
| Pages (from-to) | 553-565 |
| Number of pages | 13 |
| Journal | Kidney international |
| Volume | 98 |
| Issue number | 3 |
| DOIs | |
| State | Published - 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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In: Kidney international, Vol. 98, No. 3, 01.09.2020, p. 553-565.
Research output: Contribution to journal › Article › peer-review
}
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 S.
AU - Craig, Jonathan C.
AU - Logeman, Charlotte
AU - Sinha, Aditi
AU - Dart, Allison
AU - Eddy, Allison A.
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 L.
AU - Samuel, Susan
AU - Neu, Alicia
AU - Viecelli, Andrea K.
AU - Ju, Angela
AU - Sharma, Ankit
AU - Au, Eric H.
AU - Desmond, Hailey
AU - Shen, Jenny I.
AU - Manera, Karine E.
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 - Guha, Abhjit
AU - Solarin, Adaobi
AU - Platona, Adriana
AU - Hamilton, Alexander
AU - Woods-Barnard, Alice
AU - Eddy, Allison
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 - Jankauskiene, 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 - 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 - 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 - Pearson, Simone
AU - Khan, Simra
AU - Wilson, Skyla
AU - Sharma, Sonia
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
AU - Charles, Virginia
AU - van Biesen, Wim
AU - Winkelmayer, Wolfgang
AU - Machuca, Yenissey
AU - Salih, Yusuf
AU - Anh, Yo Han
AU - Perkins, Zachary
AU - Salih, Zeynab
N1 - Funding Information: The study was funded by The University of Sydney Research Accelerator Grant and the National Health and Medical Research Council (NHMRC) Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) (ID 1092957). CSH is supported by the NHMRC Program (grant ID1092957). AT is supported by a NHMRC Fellowship (ID 1106716). SAC is supported by the NHMRC Postgraduate Scholarship (ID 1168994). AKV is supported by a Jacquot Research Establishment Fellowship and a Princess Alexandra Research Foundation grant. EHA is supported by a NHMRC Postgraduate Scholarship (ID 1168606) and a Royal Australian College of Physicians Jacquot NHMRC Award for Excellence. TG is supported by a NHMRC Postgraduate Scholarship (ID 1169149). The authors thank the International Society of Nephrology for supporting the SONG-Kids Consensus workshop at the World Congress of Nephrology on April, 13, 2019, in Melbourne, Australia. We acknowledge, with permission, all the attendees listed in the Appendix who attended the consensus workshops. Funding Information: The study was funded by The University of Sydney Research Accelerator Grant and the National Health and Medical Research Council (NHMRC) Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) (ID 1092957). CSH is supported by the NHMRC Program (grant ID1092957 ). AT is supported by a NHMRC Fellowship (ID 1106716 ). SAC is supported by the NHMRC Postgraduate Scholarship (ID 1168994 ). AKV is supported by a Jacquot Research Establishment Fellowship and a Princess Alexandra Research Foundation grant. EHA is supported by a NHMRC Postgraduate Scholarship (ID 1168606) and a Royal Australian College of Physicians Jacquot NHMRC Award for Excellence. TG is supported by a NHMRC Postgraduate Scholarship (ID 1169149). Publisher Copyright: © 2020
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
UR - http://www.scopus.com/inward/record.url?scp=85088934417&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85088934417&partnerID=8YFLogxK
U2 - 10.1016/j.kint.2020.05.054
DO - 10.1016/j.kint.2020.05.054
M3 - Article
C2 - 32628942
AN - SCOPUS:85088934417
SN - 0085-2538
VL - 98
SP - 553
EP - 565
JO - Kidney international
JF - Kidney international
IS - 3
ER -