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.
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
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
Nick Webb | The University of Manchester, United Kingdom
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, The University of Sydney
SONG-Kids involves 5-phases:
1) 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)
2) focus groups with adolescent patients and caregivers of children/adolescents with chronic kidney disease to identify outcomes that are relevant and important to them
3) 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
4) a three-round Delphi survey with patients, caregivers, clinicians, researchers, policy makers, members from industry to develop consensus on important outcome domains
5) a consensus workshop to review and establish a core outcome domain set for trials in children with chronic kidney disease
Focus groups are being conducted in Australia, Canada and United States. The Delphi survey is planned to launch early-2017.
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