Overview and Instructions:
In this section, the rater needs to evaluate two types of movement complications: dyskinesia and motor fluctuations, including off-period dystonia, based on prior and objective information. By utilizing information gathered from the patient, caregivers, and clinical examination, answer six questions regarding the patient’s functional state over the past week, including the evaluation day. As in other sections, scores can only be whole numbers (no half points), and there cannot be any missing items. If an item cannot be rated, “UR” should be indicated to show it cannot be rated. In scoring, you will need to use percentages to answer some questions, so you need to calculate approximately how many hours the patient is awake each day, and use this number as the denominator for off-period time and dyskinesia. For off-period dystonia, the entire off-period time is the denominator.
Definitions for Raters:
Dyskinesia: Involuntary, uncontrolled movements.
Patients often describe dyskinesia with words such as “body shaking,” “twisting.” Please emphasize to the patient the difference between dyskinesia and tremor, as patients often confuse dyskinesia with tremor.
Dystonia: Twisted postures, often with a rotational component.
Patients often describe dystonia with words like “spasm,” “cramp,” “abnormal posture.”
Motor Fluctuations: Variable drug responses.
Patients often describe motor fluctuations with phrases like “medication wearing off,” “medication disappearing,” “medication effect fluctuating like a roller coaster,” “on-off phenomenon,” “unstable medication effect.”
Off-Period: Refers to the functional state when the patient is not responding well to medication, despite taking it, or when not receiving treatment for Parkinson’s disease. Patients often describe off-periods with phrases like “low points,” “bad times,” “when shaking,” “when slow,” “when my medication isn’t working.”
On-Period: Refers to the functional state when the patient is taking medication and it is effective. Patients often describe on-periods with phrases like “good times,” “when I can walk,” “when the medication is working.”
A. Dyskinesia (Excluding Off-Period Dystonia)
Instructions for the rater: Determine the patient’s total awake time per day and the time dyskinesia occurs under normal circumstances. Use this to calculate the ratio. If the patient shows dyskinesia in the clinic, please point out these movements to the patient to ensure that the patient and caregiver understand what you are assessing. You may also demonstrate typical dyskinesia seen in other patients to the patient and caregiver. When assessing this item, exclude early morning and nighttime painful dystonia.
Instructions for the patient (and caregivers): Over the past week, how many hours do you usually sleep each day? This includes both nighttime sleep and daytime naps. Good, if you sleep for ___ hours, then your total awake time is ___ hours. During these awake hours, how many hours do you experience body shaking or twisting? Please do not include the time spent trembling, which is a regular back-and-forth shaking, and do not count the time for painful foot cramps or spasms in the early morning or at night; I will ask you about those symptoms later. Please focus on abnormal movements such as body shaking, twisting, and irregular movements. Please add up the time you experience these actions while awake. A total of ___ hours (use this number for calculation).