Article

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. IMPLICATIONS FOR REHABILITATION: 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.

Langue : ANGLAIS