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Measuring quality of life in ALS/MND: validation of the WHOQOL-BREF.
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration ( IF 2.8 ) Pub Date : 2020-06-27 , DOI: 10.1080/21678421.2020.1752244
Carolyn A Young 1, 2 , Roger Mills 1 , Ammar Al-Chalabi 3 , Georgina Burke 4 , Siddharthan Chandran 5 , David J Dick 6 , John Ealing 7 , C Oliver Hanemann 8 , Timothy Harrower 9 , Christopher J Mcdermott 10 , Tahir Majeed 11 , Ashwin Pinto 12 , Kevin Talbot 13 , Jannette Walsh 14 , Timothy L Williams 15 , Alan Tennant 16 ,
Affiliation  

Objectives: The World Health Organization Quality of Life-BREF Scale (WHOQOL-BREF) is a generic QOL measure with four domains covering Physical, Psychological, Social and Environment. Providing the opportunity to contrast QoL with other conditions, or with population norms, the current study had three aims: 1) can the established domains of the WHOQOL-BREF be validated within a large ALS/MND population; 2) can a total score be validated and 3) can they provide interval level measurement? Methods: Data were obtained from the Trajectories of Outcomes in Neurological Conditions study. Internal construct validity was determined by fit of the data to the Rasch measurement model. Results: 636 participants with ALS/MND were included. All domains, except the Social domain, showed satisfactory fit to the Rasch model. All were unidimensional, and showed no Differential Item Functioning by age, gender, or onset type. Finally, a total score was validated from a bi-factor perspective. Conclusions: The WHOQOL-BREF is valid for use in populations with ALS/MND and can be analyzed to yield interval level measurement: It offers a range of domains that reflect QOL, which can be used for parametric analysis and for comparison with other conditions or general populations, two advantages for its inclusion as a trial outcome measure and for observational studies.



中文翻译:

测量 ALS/MND 的生活质量:WHOQOL-BREF 的验证。

目标:世界卫生组织的生活质量-BREF 量表 (WHOQOL-BREF) 是一种通用的生活质量衡量标准,涵盖身体、心理、社会和环境四个领域。提供机会将 QoL 与其他条件或人群标准进行对比,目前的研究有三个目标:1)WHOQOL-BREF 的既定领域能否在大型 ALS/MND 人群中得到验证;2) 可以验证总分吗? 3) 他们可以提供区间水平测量吗?方法:数据来自神经疾病结果的轨迹研究。内部结构效度通过数据与 Rasch 测量模型的拟合来确定。结果:包括 636 名患有 ALS/MND 的参与者。除社交域外,所有域都显示出对 Rasch 模型的令人满意的拟合。所有都是一维的,并且没有按年龄、性别或发病类型显示差异项目功能。最后,从双因素的角度验证了总分。_一般人群,将其作为试验结果测量和观察性研究有两个优势。

更新日期:2020-08-31
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