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New Scale for Measuring PD Increases Role of Patients and Caregivers
Christopher G. Goetz, M.D.
For the first time in its two decades of use, the “gold-standard” scale according to which doctors measure the progression of Parkinson’s disease (PD) in their patients is undergoing a radical revision and refinement.
Behind the retooling of the Unified Parkinson’s Disease Rating Scale (UPDRS) are several different factors — among them, advances in the science of Parkinson’s disease, growing recognition of the role that patients can play in tracking their own progress and even a reevaluation of the very definition of what Parkinson’s disease is, where it comes from and what physical functions it may affect.
Why is this so important, to patients, to their families and to doctors? Part of the answer is that the more we know about how Parkinson’s disease progresses, the better we will be able to treat our patients. But there is another part of the answer, perhaps less apparent to laypersons but arguably more important and immediate: that better measurement of the pace and direction of PD’s development means quicker, more efficient and less expensive ways of testing new medications through clinical trials — especially those treatments, known as neuroprotective agents, that are being tested for their potential to slow the development of Parkinson’s disease. In other words, a more refined and inclusive UPDRS means faster, better and cheaper progress towards the development of new treatments for Parkinson’s disease.
Current state of the UPDRS
The original scale is composed of four parts. Part I assesses behavioral problems, such as intellectual decline, hallucinations and depression. Part II assesses patients’ perceptions
of their ability to carry out activities of daily living, including dressing, walking and eating. Part III covers the motor evaluation of disability and includes ratings for tremor, slowness (bradykinesia), stiffness (rigidity) and balance. Part IV covers several treatment complications, including ratings of involuntary movements (dyskinesias), painful cramps (dystonia) and irregular medication responses (motor fluctuations). The goal of the UPDRS is to provide a comprehensive, practical and easy to administer scale that can be used across all patients, regardless of severity of disability, type of treatment or age.
Changing the UPDRS to reflect scientific advances
Throughout its 20 years of use, the UPDRS has been recognized as the best available rating scale for Parkinson’s disease. It is used in clinical practice and in research. Patients will see their doctor filling out numbers on their chart after asking them to tap their fingers, open and close their fist, get up from a chair and respond to being pulled from behind. All of these tasks are part of the measurement system we call the UPDRS.
Nonetheless, over time, investigators have identified weaknesses in the scale, including a lack of clarity in some of the questions and answers. Further, many current research trials focus on early Parkinson’s disease, and the scale was not designed to detect the slower and smaller changes that characterize the course of the disease in mildly-disabled patients. Finally, with scientific advances, experts now recognize several symptoms as aspects of Parkinson’s disease that were not incorporated into the original UPDRS.
In 2001, the Movement Disorder Society (MDS) sponsored a critique of the UPDRS, and the summary document that emerged from these discussions recommended the development of a new version. This new version would retain the core four-part structure of the original scale, but resolve the identified problems and incorporate the clinically pertinent Parkinson’s disease-related problems that were ignored or poorly captured in the original version.
The effort has resulted in a new scale, named the “MDS-Sponsored UPDRS Revision” (MDS-UPDRS). As of January 2007, a draft of the new scale is fully formulated and is now being tested against the original scale with 700 English-speaking Parkinson’s disease patients in the United States and elsewhere. Statistical analysis is currently being conducted and a report will be presented in June at the 2007 International Congress of the MDS in Istanbul, Turkey.
How is the new scale different?
The new scale was developed with the direct involvement of patients and caregivers, and many of the questions are formulated in standard language to be answered by patients themselves. The questionnaire can be filled out in the waiting room or after a visit with the physician. The questions focus on activities of daily living and several behaviors such as fatigue and anxiety.
The new scale is organized so as to assure numerical consistency among the answers, as follows: zero means normal or no problems; 1, minimal problems; 2, mild problems; 3, moderate problems and 4, severe problems. In all instances, descriptive language is added for each question to ensure that the respondent understands it and can give a clear answer.
The table below shows that the new version contains more questions than were in the original. Despite this, the time required for the physician to complete the entire scale is only 30 minutes, because many of the questions are now answered by the patient.
Increased emphasis on rating mild impairment/disability
The original UPDRS placed most of its emphasis on marked and severe disabilities or impairments. In line with recent scientific advances, and to accommodate the growing emphasis on studies of neuroprotection and early-stage therapies, the new scale has been designed to measure mild disabilities and permit detection of small changes. One result of this shift has been to increase the number of categories of impairment at the lower end of the disability scale, while reducing those at the more severe end of the scale.
Cultural sensitivity and official non-English translations
The 2001 MDS report identified certain cultural biases in the original scale and considered some questions to be biased towards developed countries. Further, the original scale was judged to be too restrictive in the activities it included and neglectful of some non-motor activities that are particularly important to an individual (e.g., hobbies and personal interests). The new MDS-UPDRS addresses these issues first by focusing on experiences (e.g., feeding) rather than tasks (e.g., handling utensils). There is also a question that focuses on each patient’s most important personal hobby or activity. For one patient, the answer could relate to how the favorite activity of gardening is affected by Parkinson’s disease, for another how cooking is affected, and for another how golfing or swimming is impaired. Using a question that allows each patient to consider a favorite and important activity allows the scale to be standardized in format but individualized as well.
Finally, plans are underway to prepare and test translations of the new scale into multiple languages.
What does all this mean for patients and caregivers?
Over the next year, further testing will be conducted on the MDS-UPDRS. Patients and caregivers who are used to the original version may find themselves reflecting on different questions than they were on earlier visits to the doctor. They may be asked to participate in the comparison of the original version and the new version and to help the scientists review the utility or clarity of certain questions. Once the new scale is fully revised, approved and utilized, people with Parkinson’s disease will be participating regularly in the questionnaire component.
Below we show the questions that are included in the new MDS-UPDRS. As this process develops, information from both patients and caregivers is pivotal. We appreciate and encourage your feedback!
Dr. Christopher Goetz is Director of the Center for Parkinson’s Disease and Other Movement Disorders (supported by PDF) at RushUniversityMedicalCenter in Chicago, IL.
The New MDS-UPDRS
Non-motor Aspects of Experiences of Daily Living
Hallucinations and psychosis
Features of dopamine dysregulation syndrome*
Pain and other sensations
Lightheadedness on standing
Motor Experiences of Daily Living
Saliva and drooling
Chewing and swallowing
Doing hobbies and other activities*
Turning in bed
Tremor impact on activities
Getting in and out of bed
Walking and balance
Rapid alternating movements of hands (pronation-supination)
Arising from a chair
Freezing of gait
Global spontaneity of movement (body bradykinesia)
Postural tremor of hands
Kinetic tremor of hands*
Rest tremor amplitude
Constancy of rest tremor*
time spent with dyskinesias
functional impact of dyskinesias
painful off-state dystonia
time spent in the off state
functional impact of fluctuations
complexity of motor fluctuations
Items marked with an asterisk (*) are new additions to the scale. The unmarked items are newly written, but were covered in some way in the original UPDRS.