Center for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia; Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.
J Pediatr. 2013 Oct;163(4):1179-85.e5. doi: 10.1016/j.jpeds.2013.04.066. Epub 2013 Jun 22.
To elicit utility-based quality of life (QOL) in adolescents and young adults with chronic kidney disease (CKD).
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.
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.
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.
探讨慢性肾脏病（CKD）青少年和年轻患者的基于效用的生活质量（QOL）。
本研究为横断面研究，在澳大利亚 6 家中心选取了 12-25 岁、CKD 3-5 期和 5D 的患者。QOL 通过视觉模拟量表（VAS）进行评估，同时采用 3 种基于效用的 QOL 测量方法：健康效用指数 Mark 2 和 3（HUI2/3）、包含简化版 SF-12 的肾脏病生活质量量表（SF-12）转化为 SF-6D，以及时间权衡（TTO）。采用多元线性回归分析确定 TTO QOL 权重、SF-6D 和 VAS 评分的预测因素。
在效用量表上，极端值为 0（死亡）至 1（完全健康），27 名参与者的 TTO QOL 权重平均为 0.59（SD=0.40），HUI2 为 0.73（SD=0.28），HUI3 为 0.74（SD=0.26），SF-6D 为 0.70（SD=0.14）。4 种基于效用的工具中，QOL 权重均较低，且 TTO 反应的变异性最大。透析前参与者的平均 QOL 权重较高。HUI2 显示情绪域的变异性。从肾脏病生活质量量表来看，所有 QOL 领域均有下降，尽管透析患者报告肾脏疾病负担明显更高。
CKD 青少年和年轻患者报告的 QOL 值较低。他们的基于效用的 QOL 评分表明，他们愿意用相当长的预期寿命换取完美的健康。为了优化 CKD 青少年的健康结果，尤其是那些透析患者，需要进行全面的护理以提高 QOL 并减轻疾病负担。
