We are conducting an international survey to find out what effects of treatment and care (also known as outcomes) are important to children and adolescents with kidney disease, family members, caregivers, and health professionals. The survey will ask you to rate the importance of outcomes e.g. growth, tiredness, kidney function, pain, infection, school, and to suggest other outcomes that matter to you. You are invited to complete three short surveys (in Round 2 and 3, you will see a summary of the group results). Round 1 is now closed.
If you have any questions or issues, contact us at firstname.lastname@example.org
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
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
SONG-Kids involves 5-phases:
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.
Delphi Survey – what outcomes matter to most to patients, families, and health professionals?
Round 1 of the Delphi Survey will close 5th November 2018. Click the links above to join the Delphi Panel.
October 2018 | San Diego
The SONG-Kids 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.