SONG-Kids
Why develop core outcomes for trials in children and adolescents with chronic kidney disease?
Children with chronic kidney disease (CKD), requiring dialysis or kidney transplantation, have a higher mortality rate than the general population, and severely impaired quality of life. Symptoms such as fatigue and pain are common and debilitating. Children with CKD are at risk of cognitive impairment, and poorer educational, vocational and psychosocial outcomes compared with their well peers, which have consequences through to adulthood. Treatment regimens for children with CKD are long-term, complex, and highly intrusive. While many trials have been conducted to improve outcomes in children with CKD, the outcomes measured and reported may not be relevant to patients and clinicians, and are different across trials.
The Standardised Outcomes in Nephrology – Children and Adolescents (SONG-Kids) study aims to develop a core outcome set for trials in children and adolescents with any stage of CKD that is based on the shared priorities of all stakeholders.
SONG-Kids Steering Group
Jonathan Craig (Chair) | The University of Sydney and The Children’s Hospital at Westmead, Australia
Aditi Sinha | All India Institute of Medical Sciences, India
Allison Dart | University of Mannitoba, Canada
Allison Eddy | University of British Columbia, Canada
Chandana Guha | Transplant Australia, Australia
Debbie Gipson | University of Michigan, United States
Detlef Bockenhauer | University College London, United Kingdom
Hui-Kim Yap | National University of Singapore
Jaap Groothoff | Emma Children’s Hospital Academic Medical Centre, The Netherlands
Michael Zappitelli | Montreal Children’s Hospital, Canada
Stephen Alexander | The Children’s Hospital at Westmead, Australia
Stuart Goldstein | Cincinnati Children’s Hospital Medical Center, United States
Susan Furth | University of Pennsylvania, United States
Susan Samuel | University of Calgary, Canada
Project coordinator: Camilla Hanson and Charlotte Logeman, The University of Sydney
Identifying core outcomes domains
SONG-Kids involves 5-phases:
- a systematic review to identify outcomes that have been reported in trials involving children with chronic kidney disease (including pre-dialysis, dialysis, and kidney transplantation)
- focus groups with adolescent patients and caregivers of children/adolescents with chronic kidney disease to identify outcomes that are relevant and important to them
- interviews with health professionals (including kidney specialists, surgeons, nurses, allied health professionals) involved in the care of children with chronic kidney disease to understand their views on outcomes
- a three-round Delphi survey with patients, caregivers, clinicians, researchers, policy makers, members from industry to develop consensus on important outcome domains
- a consensus workshop to review and establish a core outcome domain set for trials in children with chronic kidney disease
Project updates
Systematic review – what outcomes are being reported in trials?
The systematic review has now been published in the Journal of Paediatrics.
Focus groups – what outcomes matter to kids with CKD and family members?
Focus groups have been conducted in Australia, Canada and United States. This has been published in the American Journal of Kidney Disease.
Delphi Survey – what outcomes matter to most to patients, families, and health professionals?
The Delphi Survey has now closed with, thank you to all 557 participants from 48 countries who participated.
SONG-Kids Workshops
October 2018 | San Diego
The SONG-Kids San Diego Consensus workshop was held on Saturday 27th October 2018. We thank all the 81 children with chronic kidney disease, family members, and health professionals who took part in the workshop. The powerful and moving discussions emphasised the need to listen more, understand better the individual needs of the children, and to empower the voices of children and families.
April 2019 | Melbourne
The second SONG-Kids workshop was held on Saturday 13th April 2019 at the International Society of Nephrology, World Congress of Nephrology. Young people with chronic kidney disease, families, clinicians, policy makers and researchers all came in chorus to establish core outcomes.
“We have to sail the ship of life. We just have to navigate it differently.”
