Bibliographische Angaben zur Publikation
Development of the MG-DIS: An ICF-based disability assessment instrument for myasthenia gravis
Raggi, Alberto; Schiavolin, Silvia; Leonardi, Matilde; Antozzi, Carlo; Baggi, Fulvio; Maggi, Lorenzo; Mantegazza, Renato
Disability and Rehabilitation, 2014, Volume 36 (Number 7), Seite 546-555, London: Informa Healthcare, ISSN: 0963-8288 (Print); 1464-5165 (Online)
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.
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
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.
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.
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.
Zeitschriftenbeitrag / Forschungsergebnis
Disability and Rehabilitation
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