Development of the MG-DIS: an ICF-based disability assessment instrument for myasthenia gravis

作者：Raggi Alberto^*; Schiavolin Silvia; Leonardi Matilde; Antozzi Carlo; Baggi Fulvio; Maggi Lorenzo; Mantegazza Renato

来源：Disability and Rehabilitation, 2014, 36(7): 546-555.

DOI：10.3109/09638288.2013.804591

• Assessment
• ICF classification
• myasthenia gravis

Purpose: 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.

• 出版日期2014