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.
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.
- 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.