title: Development of the MG-DIS: an ICF-based disability assessment instrument for myasthenia gravis.
abstract: OBJECTIVE
  To develop a preliminary version of a disease-specific, patient-reported disability assessment instrument for myasthenia gravis (MG) based on the International Classification of Functioning, Disability and Health (ICF): the MG-DIS.
  
  
  METHODS
  Five consecutive steps were taken: literature review and selection of outcome measures; linking of measures' concepts to ICF categories and selection of those reported by 30% of the instruments; comparison of linking results with a previous selection of MG-relevant ICF categories; patient interview; development of questions based on retained ICF categories.
  
  
  RESULTS
  Thirty-one papers containing 21 different outcome measures were found: 13 ICF categories were linked to them. Fifty-five items were retained after the comparison with the list of MG-specific categories, and were used for patient interview. Thirteen interviews were conducted before saturation of data was reached and the final list was composed of 42 categories: based upon them, 44 questions were developed.
  
  
  CONCLUSIONS
  The preliminary version of the MG-DIS contains more information than each single MG-specific tool, in particular, for the component of environmental factors. Further research is needed to test its psychometric properties.
  
  
  CONCLUSIONS
  It is important that patient-reported outcome is incorporated in MG patient's assessment. MG features can be evaluated with ICF-based methods. An MG-specific patient-reported disability assessment instrument can be used to monitor changes of functioning in patients on MG-specific treatments, and can be used in clinical trials as outcome measure.
authors.affiliation: Neurology, Public Health and Disability Unit and.
authors.forename: Alberto
authors.initials: A
authors.lastname: Raggi
authors.forename: Silvia
authors.initials: S
authors.lastname: Schiavolin
authors.forename: Matilde
authors.initials: M
authors.lastname: Leonardi
authors.forename: Carlo
authors.initials: C
authors.lastname: Antozzi
authors.forename: Fulvio
authors.initials: F
authors.lastname: Baggi
authors.forename: Lorenzo
authors.initials: L
authors.lastname: Maggi
authors.forename: Renato
authors.initials: R
authors.lastname: Mantegazza
mesh_terms: D000203:Activities of Daily Living; D004185:Disability Evaluation; D006233:Persons with Disabilities / Q000523:psychology / Q000534:rehabilitation; D004777:Environment; D005260:Female; D054624:Health Status Disparities; D006801:Humans; D064702:International Classification of Functioning, Disability and Health; D008297:Male; D008875:Middle Aged; D009157:Myasthenia Gravis / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology / Q000534:rehabilitation; D017063:Outcome Assessment, Health Care / Q000379:methods*; D057566:Self Report; D011795:Surveys and Questionnaires