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Type: Journal article
Title: Quality of life of young adults and adolescents with chronic kidney disease
Author: Tong, A.
Wong, G.
McTaggart, S.
Henning, P.
Mackie, F.
Carroll, R.
Howard, K.
Craig, J.
Citation: Journal of Pediatrics, 2013; 163(4):1179-1185
Publisher: Mosby Inc
Issue Date: 2013
ISSN: 0022-3476
1097-6833
Statement of
Responsibility: 
Allison Tong, Germaine Wong, Steve McTaggart, Paul Henning, Fiona Mackie, Robert P. Carroll, Kirsten Howard, Jonathan C. Craig
Abstract: <h4>Objective</h4>To elicit utility-based quality of life (QOL) in adolescents and young adults with chronic kidney disease (CKD).<h4>Study design</h4>A cross-sectional study was conducted among patients aged 12-25 years with CKD stage 3-5 and 5D from 6 centers in Australia. QOL was measured using a visual analogue scale, and 3 utility-based QOL measures: Health Utilities Index Mark 2 and 3 (HUI2/3), Kidney Disease Quality of Life, incorporating the short form (SF)-12 transformed to SF-6D, and time trade-off (TTO). Multiple linear regression was used to define predictors for TTO QOL weights, SF-6D, and visual analogue scale scores.<h4>Results</h4>On a utility scale, with extremes of 0 (death) to 1 (full health), the 27 participants had a mean TTO QOL weight of 0.59 (SD = 0.40), HUI2 of 0.73 (SD = 0.28), HUI3 of 0.74 (SD = 0.26), and SF-6D of 0.70 (SD = 0.14). QOL weights were consistently low across the 4 utility-based instruments with widest variability in TTO responses. Mean QOL weights were higher among predialysis participants. The HUI2 indicated variability in the domain of emotion. From the Kidney Disease Quality of Life measures, decrements were observed in all QOL domains though dialysis patients reported a significantly higher burden attributed to kidney disease.<h4>Conclusions</h4>Adolescent and young adults with CKD report low QOL values. Their utility-based QOL scores imply they are willing to trade considerable life expectancy for perfect health. Holistic care to improve QOL and minimize disease burden are imperative for optimizing health outcomes in young people with CKD, particularly those on dialysis.
Keywords: CKD, Chronic kidney disease
HUI, Health Utilities Index
HUI2/3, Health Utilities Index Mark 2 and 3
KDQOL, Kidney Disease Quality of Life
QOL, Quality of life
SF, Short form
TTO, Time trade-off
VAS, Visual analogue scale
Rights: Copyright © 2013 Mosby Inc. All rights reserved.
DOI: 10.1016/j.jpeds.2013.04.066
Published version: http://dx.doi.org/10.1016/j.jpeds.2013.04.066
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