Responsiveness of the Multiple Sclerosis International Quality of Life questionnaire to disability change: a longitudinal study

Health and Quality of Life Outcomes

Pascal Auquier⁴  Mohamed Boucekine⁴  Jean Pelletier¹  Egemen Idiman⁷  Sergio Stecchi⁶  Peter Flachenecker²  Oscar Fernández⁵  Helmut Butzkueven³  Karine Baumstarck⁴ 

[1] Department of Neurology, Timone University Hospital, Marseille, France;Neurological Rehabilitation Center Quellenhof, Bad Wildbad, Germany;Department of Neurology, Box Hill Hospital, Monash University, Box Hill VIC 3128, Australia;EA3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix-Marseille Université, Marseille, France;Institute of Clinical Neurosciences, Hospital Regional Universitario Carlos Haya, Málaga, Spain;Multiple Sclerosis Unit, IRCCS Istituto delle Scienze Neurologiche, Azienda Bologna, USL, Italy;Department of Neurology, Dokuz Eylül University, Izmir, Turkey

关键词: Longitudinal studies;    SF-36;    MusiQoL;    Responsiveness;    Outcome research;    Quality of life;    Multiple sclerosis;   

Others  :  823415
DOI  :  10.1186/1477-7525-11-127

 received in 2013-04-25, accepted in 2013-07-25,  发布年份 2013

【 摘 要 】

Background

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.

Objective

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.

Methods

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.

Results

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.

Conclusions

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.

【 授权许可】

   
2013 Baumstarck et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

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