MDS-UPDRS Non-English Translations
Overview: The MDS-UPDRS is a revision of the original UPDRS. The new version has successfully completed clinimetric evaluations in its English format. As MDS is an international society, non-English official translations that meet clinimetric standards are encouraged. Below is the outline of the steps to participate in the development of a non-English version of the MDS-UPDRS.
Requirements for participation:
- Local translation/back translation program will include two teams (translators and back translators) that operate under one director, but otherwise are independent for this phase of the program.
- For each team, at least one person who is fluent in English and the native language and is a movement disorder specialist is required. Other specialists (professional translator, linguist, cultural expert etc are optional). An added credential of merit will be some designation from a local neurological organization that officially recognizes this translation program.
- The proposed list of these two teams and the raters who will participate in the validation phase will be submitted to Christopher Goetz who will obtain approval from the UPDRS Steering Committee before initiation of the program.
- The Director for each language group will agree on behalf of the team to publication guidelines outlining that the investigators will have the responsibility to summarize their findings and submit them to the MDS. They will be encouraged to submit them for peer-review publication and will determine authorship independently of the UPDRS Steering Committee or the MDS. They will agree to acknowledge the MDS Task Force and list the members of the UPDRS Committee along with other people who participated in the program. Christopher Goetz will have final approval of that list of acknowledgments.
Phase I: Translation and back-translation
- The translation and back translation will be submitted to Christopher Goetz, who will identify an independent person from the movement disorder community of that country to review the translation and back translation. This independent person will submit a report to Christopher Goetz.
- The MDS-UPDRS Steering Committee will review the original submission and the critique of this local expert. Based on this review, revisions will be requested or the documents will be approved for Cognitive Testing.
Phase II: Cognitive Testing
- Provisionally approved translations will be returned to the local team with the request that a subset of potentially culturally sensitive or complex items undergo cognitive testing in a set of PD patients (approximately 10 PD patients).
- Questions will be asked of the patient and examiner after each targeted item to assess patient and examiner understanding and comfort, using a guide (in English) prepared by a cognitive specialist (Nancy LaPelle). Before use, the guide will need to be translated by the team conducting the translation.
- After review of the cognitive testing results using an analysis guide prepared by Dr. LaPelle, the translation team may identify problem areas. In the event that major issues are identified, further forward and back translations of some individual items may be needed along with further testing of those portions of the instrument. Whether a new translation is needed or there are minor issues, a response from the translation team (in English) to Christopher Goetz describing results of the cognitive testing will be reviewed by the Steering Committee for provisional approval of the translation that will now be fully tested (Phase III)
Phase III: Large-scale validation testing.
- Each translation team will administer the MDS-UPDRS to 350 PD patients for a single visit. These patients should be native speakers of the language being tested. The patient sample should include samples from different ages, genders, severities of PD and educational levels.
- Data entry and analysis. Sites will be encouraged to enter data directly onto a Web site developed for this program as part of the infrastructural cost. Statisticians in this program will provide the factor analysis and differential item function (DIF) scores. Other analyses that individual groups from each country wish to conduct can be handled by the team for each country and are not part of this program. Questions regarding individual sub-analyses and access to data will be directed to Christopher Goetz.
- Primary outcome for designation of approval: confirmatory factor analysis will be run against the established English version factor structure by each section. Potentially, Differential Item Function will be run on items (both uniform and non-uniform DIF) by gender, race, disease severity, education and age. To be designated as an official translation, CFI of the final model for each section of MDS-UPDRS must be ≥ 0.9 relative to the English version.