title: Responsiveness of the Multiple Sclerosis International Quality of Life questionnaire to disability change: a longitudinal study.
abstract: 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.
authors.forename: Karine
authors.initials: K
authors.lastname: Baumstarck
authors.forename: Helmut
authors.initials: H
authors.lastname: Butzkueven
authors.forename: Oscar
authors.initials: O
authors.lastname: Fernández
authors.forename: Peter
authors.initials: P
authors.lastname: Flachenecker
authors.forename: Sergio
authors.initials: S
authors.lastname: Stecchi
authors.forename: Egemen
authors.initials: E
authors.lastname: Idiman
authors.forename: Jean
authors.initials: J
authors.lastname: Pelletier
authors.forename: Mohamed
authors.initials: M
authors.lastname: Boucekine
authors.forename: Pascal
authors.initials: P
authors.lastname: Auquier
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D018450:Disease Progression; D005260:Female; D054624:Health Status Disparities; D006305:Health Status Indicators; D006801:Humans; D007398:Interpersonal Relations; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000150:complications / Q000175:diagnosis / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012959:Socioeconomic Factors; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult
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