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Since the 1980s, the scope of Parkinson’s disease has expanded, especially in the appreciation of nonmotor signs, according to Christopher G. Goetz, MD. “As part of a broad-based clinical scale critique, the Movement Disorders Society (MDS) organized a task force review of the Unified Parkinson’s Disease Rating Scale (UPDRS). This report led to the recommendation for a new version of the UPDRS,” said Dr. Goetz. The focus of the revisions would be the creation of more detailed guidelines, more specific anchors, more attention to nonmotor aspects of Parkinson’s disease, and clearer rater options to capture mild impairments. In his presentation at the 57th Annual Meeting of the American Academy of Neurology, Dr. Goetz detailed the revision process, the major features of the MDS-UPDRS, and the clinical program designed to validate the new scale.

DIVIDE AND CONQUER

The revision process began with the recruitment of seven members of the MDS, each of whom was assigned the task of chairing either part 1, 2, 3, or 4 of the UPDRS, a scale development committee, a metrics committee, or an appendix committee. “Each of these chairpersons recruited two or three additional members, and these subcommittees assumed primary responsibility for the assigned sections,” elaborated Dr. Goetz, Professor of Neurological Sciences at Rush University in Chicago.

The first drafts of the MDS-UPDRS were circulated through the entire group with written comments and suggested resolutions to the critiques. “These resolutions were the focus of a one-day, face-to-face meeting of the entire group, aimed at resolving the concerns,” Dr. Goetz said. The ratified draft was presented to the MDS in Rome in 2004.

The recommendations contain a single scale for clinical and research studies, providing a single total sum score. Likewise, the four-part scale was retained, although the parts have been renamed: part 1 covers nonmotor experiences of daily living to parallel motor experiences of daily living in part 2. Part 3 is still the motor examination objective component, and part 4 assesses motor complications. “This decision allowed us to bring together multiple items that were distributed in the original UPDRS—all of which were nonmotor—and turn them into a single section that assesses behavior, sleep, pain, and dysautonomia. Part 4 was newly restricted to motor complications,” he said.

All questions in the MDS-UPDRS now have five response options, 0 to 4, in contrast to the yes/no options in the original version. Clinical designations of normal, slight, mild, moderate, and severe are attached to each numeric item, respectively. “To reflect the critique’s call for better differentiation between changes that occur early, where so many clinical trials today are focused, we shifted the options towards less disability,” he explained.

Six additional items were included in the MDS-UPDRS, raising the total to 48 items, Dr. Goetz said. “Most of these items focus on nonmotor aspects of Parkinson’s disease.” Also, there has been “substantial rewording and refocusing” of items throughout the scale, he noted.

For part 1, the new items address anxious mood, urinary problems, constipation, and their impact on activities of daily living. For part 2, “we’ve included another fine-motor task question, specifically to be tailored to the individual’s hobbies or interests. It’s meant to be culturally neutral, so it’s equally applicable to ping- pong or snake handling.” In part 3, a toe-tapping item was added, and the tremor questions have greater focus, Dr. Goetz said. Part 4 has three questions each on dyskinesia and on motor fluctuations.

The committee also prioritized a 30-minute limit for the administration of the MDS-UPDRS (the original took approximately 40 minutes to complete) and recommended that parts 1 and 2 be self-administered to accommodate this time constraint.

“In addition, many ambiguities existed in how to conduct the examination, and therefore very clear instructions for patients and raters are part of the new version. Operative definitions are provided, and official language translations will be developed; questions have been reworded so as to minimize cultural bias,” he said.

Finally, given the multiplicity of nonmotor aspects of Parkinson’s disease and their priority on a relatively short scale, the committee accepted the fact that in-depth questions on nonmotor items were impractical, Dr. Goetz noted. Therefore, the MDS-UPDRS Appendix serves as an official guide to focused scales. Recommended scales are those that successfully completed clinimetric testing with validity, reliability, and sensitivity assessments along with prior application to Parkinson’s disease. Suggested scales will have some but not all of those criteria, he said, noting that the Appendix will be continually updated.

TO ROAD TO REFINEMENT

The clinimetric program comprised a qualitative evaluation designed to ensure that the wording and concepts are clear to patients and raters, a cross-sectional comparison of the original and new versions of the UPDRS, and a test of responsivity to clinical interventions. The first clinimetric phase is partially complete, Dr. Goetz noted, and the second will be conducted later this year. Full clinimetric testing is expected to be completed in 2007.

In the interim, “we have decided not to publish any working draft of the MDS-UPDRS because of concerns that any publication would be misinterpreted as a replacement for the original UPDRS,” Dr. Goetz stressed. “Until we complete the clinimetric testing and are comfortable with the final version of the MDS-UPDRS, the original UPDRS should be used.”

NR

—C. Justin Romano

Suggested Reading
Movement Disorder Society Task Force on Rating Scales for Parkinson’s Disease. The Unified Parkinson’s Disease Rating Scale (UPDRS): status and recommendations. Mov Disord. 2003;18:738-750.

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