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Quality of life of children and adolescents with chronic kidney disease: a cross-sectional study
  1. Anna Francis1,
  2. Madeleine S Didsbury1,2,
  3. Anita van Zwieten1,2,
  4. Kerry Chen1,2,
  5. Laura J James1,2,
  6. Siah Kim2,
  7. Kirsten Howard1,
  8. Gabrielle Williams1,2,
  9. Omri Bahat Treidel2,
  10. Steven McTaggart3,
  11. Amanda Walker4,
  12. Fiona Mackie5,
  13. Tonya Kara6,
  14. Natasha Nassar1,
  15. Armando Teixeira-Pinto1,2,
  16. Allison Tong1,2,
  17. David Johnson7,8,9,
  18. Jonathan C Craig1,2,
  19. Germaine Wong1,2,10
  1. 1 Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  2. 2 Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
  3. 3 Child and Adolescent Renal Service, Children’s Health Queensland, Herston, Queensland, Australia
  4. 4 Department of Nephrology, The Royal Children’s Hospital, Melbourne, Victoria, Australia
  5. 5 Department of Nephrology, Sydney Children’s Hospital at Randwick, Sydney, New South Wales, Australia
  6. 6 Department of Nephrology, Starship Children’s Hospital, Auckland, New Zealand
  7. 7 Centre for Kidney Disease Research, University of Queensland, Brisbane, Queensland, Australia
  8. 8 Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia
  9. 9 Translational Research Institute, Brisbane, Queensland, Australia
  10. 10 Centre for Transplant and Renal Research, Westmead Hospital, Sydney, New South Wales, Australia
  1. Correspondence to Dr Anna Francis, School of Public Health, The University of Sydney, Camperdown, NSW 2006, Australia; anna.francis{at}


Objective The aim was to compare quality of life (QoL) among children and adolescents with different stages of chronic kidney disease (CKD) and determine factors associated with changes in QoL.

Design Cross-sectional.

Setting The Kids with CKD study involved five of eight paediatric nephrology units in Australia and New Zealand.

Patients There were 375 children and adolescents (aged 6–18 years) with CKD, on dialysis or transplanted, recruited between 2013 and 2016.

Main outcome measures Overall and domain-specific QoL were measured using the Health Utilities Index 3 score, with a scale from −0.36 (worse than dead) to 1 (perfect health). QoL scores were compared between CKD stages using the Mann-Whitney U test. Factors associated with changes in QoL were assessed using multivariable linear and ordinal logistic regression.

Results QoL for those with CKD stages 1–2 (n=106, median 0.88, IQR 0.63–0.96) was higher than those on dialysis (n=43, median 0.67, IQR 0.39–0.91, p<0.001), and similar to those with kidney transplants (n=135, median 0.83, IQR 0.59–0.97, p=0.4) or CKD stages 3–5 (n=91, 0.85, IQR 0.60–0.98). Reductions were most frequent in the domains of cognition (50%), pain (42%) and emotion (40%). The risk factors associated with decrements in overall QoL were being on dialysis (decrement of 0.13, 95% CI 0.02 to 0.25, p=0.02), lower family income (decrement of 0.10, 95% CI 0.03 to 0.15, p=0.002) and short stature (decrement of 0.09, 95% CI 0.01 to 0.16, p=0.02).

Conclusions The overall QoL and domains such as pain and emotion are substantially worse in children on dialysis compared with earlier stage CKD and those with kidney transplants.

  • psychology
  • nephrology
  • patient perspective
  • outcomes research

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  • Contributors GWong, AT, ATP, KH, GWilliams, SMcT, AW, FM, NN, DJ and JCC conceptualised and designed the study, and reviewed and revised the manuscript. LJJ, AvZ, MSD, TK, KC and SK collected the data and reviewed and revised the manuscript. OBT contributed to data analysis and reviewed the manuscript. AF collected the data, performed most of the data analysis, wrote the first draft of the manuscript and revised the manuscript.

  • Funding The study was funded by the National Health and Medical Research Council (grant numbers APP1115259 and APP1092957: GW, ATP, AvZ).

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Ethics approvals were obtained from the relevant hospital ethics committees (Auckland: HREC/15/NTB/37, Sydney Children’s Hospital Network: HREC/12/SCHN/159, Melbourne: HREC/33229, Brisbane: HREC/12/QCRH/113).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Additional deidentified unpublished data may be released on a case-by-case basis.