Life participation was identified as a high priority outcome domain by children and young people with chronic kidney disease and health professionals through the international SONG-Kids Delphi Survey and consensus workshops. Life participation is about the ability to participate in meaningful activities of daily living include going to school, playing sports, spending time with family and friends. The aim of SONG-Kids Life Participation is to establish a core patient-reported outcome measure (i.e. short survey) for life participation that is meaningful, valid, and feasible for use in all clinical trials involving children with chronic kidney disease.
Mignon McCulloch (Chair) | University of Cape Town, South Africa
Alex Hamilton |University of Bristol, United Kingdom
Alicia Neu | Johns Hopkins University, United States
Amanda Dominello | The Children’s Hospital at Westmead, Australia
Augustina Jankauskiene |Vilnius University, Lithuania
Bashir Admani |University of Nairobi, Kenya
Bethany Foster | McGill University, Canada
Christopher Esezobor |University of Lagos, Nigeria
Franz Schaeffer | Heidelberg University Hospital, Germany
Isaac Liu | National University Hospital Singapore, Singapore
Rebecca Johnson | Children’s Mercy Hospital, United States
Sebastian Wolfenden | Australia
Shanna Sutton | United States
Stephen Marks | Great Ormond Street Hospital, United Kingdom
Jasmijn Kerklaan (Project coordinator) | The University of Sydney, Australia
Camilla Hanson (Project coordinator) | The University of Sydney, Australia
Elyssa Hannan (Project coordinator) | The University of Sydney, Australia
We are currently completing a systematic review of patient- and parent-reported outcome measures that have been used to assess life participation in children with chronic kidney disease.
We will hold a consensus workshop with children and young people people with chronic kidney disease to discuss how to measure life participation in a relevant and meaningful way. This is planned to be held in 2020.
Pilot and validation study
Once we have identified or established a possible measure, we will conduct pilot and validation studies.