PDF(Pubmed)
Abstract：
OBJECTIVE: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition with a constellation of symptoms presenting as severe and profound fatigue of ≥ 6 months not relieved by rest. ME/CFS affects health-related quality of life (HRQoL), which can be measured using multi-attribute health state utility (HSU) instruments. The aims of this study were to quantify HSUs for people living with ME/CFS, and to identify an instrument that is preferentially sensitive for ME/CFS.
METHODS: Cross-sectional national survey of people with ME/CFS using the AQoL-8D and EQ-5D-5L. Additional questions from the AQoL-8D were used as \'bolt-ons\' to the EQ-5D-5L (i.e., EQ-5D-5L-Psychosocial). Disability and fatigue severity were assessed using the De Paul Symptom Questionnaire-Short Form (DSQ-SF). HSUs were generated using Australian tariffs. Mean HSUs were stratified for sociodemographic and clinical factors. Bland-Altman plots were used to compare the three HSU instruments.
RESULTS: For the 198 participants, mean HSUs (95% confidence intervals) were EQ-5D-5L: 0.46 (0.42-0.50); AQoL-8D: 0.43 (0.41-0.45); EQ-5D-5L-Psychosocial: 0.44 (0.42-0.46). HSUs were substantially lower than population norms: EQ-5D-5L: 0.89; AQoL-8D: 0.77. As disability and fatigue severity increased, HSUs decreased in all three instruments. Bland-Altman plots revealed interchangeability between the AQoL-8D and EQ-5D-5LPsychosocial. Floor and ceiling effects of 13.5% and 2.5% respectively were observed for the EQ-5D-5L instrument only.
CONCLUSIONS: ME/CFS has a profound impact on HRQoL. The AQoL-8D and EQ-5D-5L-Psychosocial can be used interchangeably: the latter represents a reduced participant burden.
METHODS: Cross-sectional national survey of people with ME/CFS using the AQoL-8D and EQ-5D-5L. Additional questions from the AQoL-8D were used as \'bolt-ons\' to the EQ-5D-5L (i.e., EQ-5D-5L-Psychosocial). Disability and fatigue severity were assessed using the De Paul Symptom Questionnaire-Short Form (DSQ-SF). HSUs were generated using Australian tariffs. Mean HSUs were stratified for sociodemographic and clinical factors. Bland-Altman plots were used to compare the three HSU instruments.
RESULTS: For the 198 participants, mean HSUs (95% confidence intervals) were EQ-5D-5L: 0.46 (0.42-0.50); AQoL-8D: 0.43 (0.41-0.45); EQ-5D-5L-Psychosocial: 0.44 (0.42-0.46). HSUs were substantially lower than population norms: EQ-5D-5L: 0.89; AQoL-8D: 0.77. As disability and fatigue severity increased, HSUs decreased in all three instruments. Bland-Altman plots revealed interchangeability between the AQoL-8D and EQ-5D-5LPsychosocial. Floor and ceiling effects of 13.5% and 2.5% respectively were observed for the EQ-5D-5L instrument only.
CONCLUSIONS: ME/CFS has a profound impact on HRQoL. The AQoL-8D and EQ-5D-5L-Psychosocial can be used interchangeably: the latter represents a reduced participant burden.
摘要：
目的：肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种慢性疾病，表现为重度和深度疲劳≥6个月，休息不能缓解。ME/CFS影响健康相关生活质量（HRQoL），可以使用多属性健康状态实用程序(HSU)工具来测量。这项研究的目的是量化患有ME/CFS的人的HSUs，并确定对ME/CFS优先敏感的仪器。
方法：使用AQoL-8D和EQ-5D-5L对ME/CFS患者进行全国横断面调查。来自AQoL-8D的其他问题被用作EQ-5D-5L的“螺栓”(即，EQ-5D-5L-心理社会)。使用DePaul症状问卷简表（DSQ-SF）评估残疾和疲劳严重程度。HSU是使用澳大利亚关税生成的。平均HSU根据社会人口统计学和临床因素进行分层。Bland-Altman地块用于比较三种HSU仪器。
结果：对于198名参与者，平均HSUs(95%置信区间)为EQ-5D-5L:0.46(0.42-0.50);AQoL-8D:0.43(0.41-0.45);EQ-5D-5L-社会心理:0.44(0.42-0.46).HSU大大低于人口标准：EQ-5D-5L：0.89；AQoL-8D：0.77。随着残疾和疲劳严重程度的增加，所有三种仪器的HSU均下降。Bland-Altman地块揭示了AQoL-8D和EQ-5D-5LPsychosocial之间的互换性。仅在EQ-5D-5L仪器中观察到分别为13.5％和2.5％的地板和天花板效应。
结论：ME/CFS对HRQoL有深远的影响。AQoL-8D和EQ-5D-5L-社会心理可以互换使用：后者代表参与者负担的减轻。
方法：使用AQoL-8D和EQ-5D-5L对ME/CFS患者进行全国横断面调查。来自AQoL-8D的其他问题被用作EQ-5D-5L的“螺栓”(即，EQ-5D-5L-心理社会)。使用DePaul症状问卷简表（DSQ-SF）评估残疾和疲劳严重程度。HSU是使用澳大利亚关税生成的。平均HSU根据社会人口统计学和临床因素进行分层。Bland-Altman地块用于比较三种HSU仪器。
结果：对于198名参与者，平均HSUs(95%置信区间)为EQ-5D-5L:0.46(0.42-0.50);AQoL-8D:0.43(0.41-0.45);EQ-5D-5L-社会心理:0.44(0.42-0.46).HSU大大低于人口标准：EQ-5D-5L：0.89；AQoL-8D：0.77。随着残疾和疲劳严重程度的增加，所有三种仪器的HSU均下降。Bland-Altman地块揭示了AQoL-8D和EQ-5D-5LPsychosocial之间的互换性。仅在EQ-5D-5L仪器中观察到分别为13.5％和2.5％的地板和天花板效应。
结论：ME/CFS对HRQoL有深远的影响。AQoL-8D和EQ-5D-5L-社会心理可以互换使用：后者代表参与者负担的减轻。
