CS HANSON1,2, G RAMAN2, Y ZHANG2, AF RALPH1,2, AJU1,2, LJ JAMES1,2, AK VIECELLI3, S MCTAGGART4, A WALKER5, J DIONNE6, T BLYDTHANSEN6, H CURRIER7, M MICHAEL7, S WENDERFER7, M ZAPPITELLI9, A DART10, S FURTH11, AA EDDY6, S SAMUEL, J GROOTHOFF12, NJA WEBB13, Y HUI-KIM14, D BOCKENHAUER15, A SINHA16, SI ALEXANDER2, SL GOLDSTEIN17, DS GIPSON18, JC CRAIG1,2, A TONG1,2, FOR THE SONG-KIDS INITIATIVE
1Sydney School of Public Health, University of Sydney, Sydney, New South Wales; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales; 3Deparment of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland; 4Queensland Child and Adolescent Renal Service, Queensland; 5Department of Nephrology, Royal Children’s Hospital Melbourne, Parkville, Victoria; 6Department of Pediatrics, BC Children’s Hospital and University of British Columbia, Vancouver; 7Renal Section, Department of Pediatrics, Texas Children’s Hospital/Baylor College of Medicine, Houston, Texas; 8Department of Pediatrics, Section of
Nephrology, University of Calgary, Calgary, Canada; 9Division of Pediatric Nephrology, Department of Pediatrics, Montreal Children’s Hospital, McGill University Health Centre, McGill University, Montreal; 10Department of Pediatrics and Child Health, The Children’s Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg; 11Departments of Pediatrics and Epidemiology, Perelman School of Medicine and Division of Nephrology, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; 12Department of Pediatric Nephrology, Academic Medical Center (AMC), Emma Children’s Hospital, Amsterdam, The Netherlands; 13Department of Pediatric Nephrology and NIHR/Wellcome Trust Clinical Research Facility, University of Manchester, Manchester Academic Health Science Centre, Royal Manchester Children’s Hospital, Manchester, UK; 14Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; 15UCL Centre for Nephrology and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK; 16Division of
Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, India; 17Division of Nephrology and Hypertension, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA; 18University of Michigan, Ann Arbor, USA Department of Pediatrics, School of Medicine
Aim: To identify outcomes that are important to children with chronic kidney disease (CKD) and their caregivers, and ultimately to inform clinical care and a patient-focussed research agenda.
Background: CKD has a devastating impact on the lives of children and their families, due to delayed development, debilitating symptoms and lifethreatening complications. Trials frequently report surrogate outcomes, rather than clinical and patient-centred outcomes, and children and caregivers are rarely involved in determining what outcomes should be reported.
Methods: Children and adolescents with CKD (Stage 1-5, dialysis, transplant) and caregivers were purposively sampled from 4 centres across Australia, the United States and Canada. Participants identiﬁed and ranked outcomes, and discussed the reasons for their priorities. The mean rank score was determined, and qualitative data were analysed thematically.
Results: Twenty-ﬁve patients (aged 10 – 21 years, mean 14 years) and 35 caregivers participated in 10 groups, and identiﬁed 41 outcomes. The ﬁve highest ranked outcomes for patients were: kidney function (mean rank score 7.6/10), physical activity (7.1), survival (6.9), growth (6.9) and fatigue (6.9). Caregiver’s ﬁve highest ranked outcomes were: kidney function (8.8), weight gain (8.2), impact on family (7.5), cardiovascular disease (7.0) and anxiety (6.7). The themes underpinning their choices were a desire to thrive and survive; managing ‘normal’ daily living; preserving health; seeking control and certainty of future.
Conclusions: Children prioritized their kidney health and survival, physical function, appearance, and social, sport, and school participation. Caregivers were concerned about cardiovascular disease, the child’s kidney function, family life, and the child’s anxiety. Trials that include outcomes important to children with CKD and their caregivers can better inform shared decision making.