Abstract: TH-PO662

Identifying Important Outcomes for Children with CKD and Their Caregivers: Focus Groups with Nominal Group Technique

Session Information

  • Pediatric Nephrology
    November 02, 2017 | Location: Hall H, Morial Convention Center
    Abstract Time: 10:00 AM - 10:00 AM

Category: Developmental Biology and Inherited Kidney Diseases

  • 403 Pediatric Nephrology

Authors

  • Hanson, Camilla Sara, University of Sydney, Sydney School of Public Health, Faculty of Medicine, Westmead, New South Wales, Australia
  • Raman, Gayathri, The Children's Hospital at Westmead, Sydney, New South Wales, Australia
  • Zhang, Yifan, The Children's Hospital at Westmead, Sydney, New South Wales, Australia
  • Ralph, Angelique F., University of Sydney, Sydney School of Public Health, Faculty of Medicine, Westmead, New South Wales, Australia
  • Ju, Angela, University of Sydney, Sydney School of Public Health, Faculty of Medicine, Westmead, New South Wales, Australia
  • James, Laura J, University of Sydney, Sydney School of Public Health, Faculty of Medicine, Westmead, New South Wales, Australia
  • Viecelli, Andrea K., Sir Charles Gairdner Hospital, Perth, New South Wales, Australia
  • Craig, Jonathan C., University of Sydney, Sydney School of Public Health, Faculty of Medicine, Westmead, New South Wales, Australia
  • Tong, Allison, University of Sydney, Sydney School of Public Health, Faculty of Medicine, Westmead, New South Wales, Australia

Group or Team Name

  • SONG Kids Investigators and Steering Committee
Background

Chronic kidney disease has a devastating impact on the lives of children and their families, due to delayed development, debilitating symptoms and life-threatening complications. Trials frequently report surrogate outcomes, rather than clinical and patient-centered outcomes, and children and caregivers are rarely involved in determining what outcomes should be reported. We aimed to identify outcomes that are important to children with CKD and their caregivers, and ultimately to inform clinical care and a patient-focussed research agenda.

Methods

Children and adolescents with CKD (stage 1-5, dialysis, transplant) and caregivers were purposively sampled from 4 centers 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 analyzed thematically.

Results

Twenty-six patients (aged 10 – 21 years, mean 14 years) and 45 caregivers participated in 12 groups, and identified 32 outcomes. The five highest ranked outcomes for patients were: physical activity (7.6/10), kidney function (7.6), fatigue (6.9), infection (6.8) and survival (6.8). Caregiver’s five highest ranked outcomes were: kidney function (8.5), weight gain (8.2), survival (7.5), infection/immunity (7.4), and graft survival (7.2). The themes underpinning their choices were gaining independence and realizing potential; upheaval and intrusion on daily living; preserving health and kidney function; seeking control; and certainty of future.

Conclusion

Children prioritized their kidney health and survival, appearance, and social, sport, and school participation. Caregivers were most concerned about their child’s kidney function, graft survival, infection, survival, and gaining weight. Trials that include outcomes important to children with CKD and their caregivers can better inform shared decision-making.