文章基本信息

标题：Responsiveness of the Multiple Sclerosis International Quality of Life questionnaire to disability change: a longitudinal study
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作者：Karine Baumstarck ; Helmut Butzkueven ; Oscar Fernández 等
期刊名称：Health and Quality of Life Outcomes
印刷版ISSN：1477-7525
电子版ISSN：1477-7525
出版年度：2013
卷号：11
期号：1
页码：127
DOI：10.1186/1477-7525-11-127
语种：English
出版社：BioMed Central
摘要：Responsiveness, defined as the ability to detect a meaningful change, is a core psychometric property of an instrument measuring quality of life (QoL) rarely reported in multiple sclerosis (MS) studies. To assess the responsiveness of the Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire to change in disability over 24 months, defined by change in the Expanded Disability Status Scale (EDSS) score. Patients with MS were enrolled into a multicenter, longitudinal observational study. QoL was assessed using both the MusiQoL and the 36-Item Short-Form (SF-36) instruments at baseline and every 6 months thereafter up to month 24; neurological assessments, including EDSS score, were performed at each evaluation. The 24-month EDSS was available for 524 patients. In the 107 worsened patients, two specific dimensions of MusiQoL, the sentimental and sexual life and the relationships with health care system dimensions, and ‘physical’ scores of SF-36 showed responsiveness. Whereas specific dimensions of MusiQoL identified EDSS changes, the MusiQoL index did not detect disability changes in worsened MS patients in a 24-month observational study. Future responsiveness validation studies should include longer follow-up and more representative samples.
关键词：Multiple sclerosis ; Quality of life ; Outcome research ; Responsiveness ; MusiQoL ; SF-36 ; Longitudinal studies