In a previous blogpost, I wrote about how Patient Reported Outcomes (PROs) is not only a hot topic in the medical world, but also pivotal to Parkinson’s research. There is quite an alphabet soup list of surveys and diagnostic scales being used by Parkinson’s researchers across many institutions, such as: PASE, EQ-5D, MDS-UPDRS, NMSQuest, PDAQ-15, PDQ-8, PD PROP, PRO-PD, GDS, and (my personal favorite) The Edinburgh Handedness Inventory, among others. Many of these tools are also used in Fox Insight (a project of Michael J. Fox Foundation (MJFF)). After an eye-blearing day consulting with my research assistants, Dr. Google and Dr. Wikipedia, I was finally able to translate this list.
First, a couple diagnostic scales used by clinicians that are NOT surveys:
Hoehn and Yahr
This is an old (1967) 5-point scale that has been superseded, but still pops up occasionally in research literature. It’s entirely focused on motor symptoms: From 1: “Unilateral involvement only usually with minimal or no functional disability” to 5: “Confinement to bed or wheelchair unless aided”
MDS-UPDRS Movement Disorder Society – Unified Parkinson’s Disease Rating Scale
This is the current clinical “gold standard” and very likely what your neurologist is using to record your symptoms. It was originally developed in 2003 and modified in 2007 to address two major limitations: the lack of consistent anchor among subscales and the low emphasis on the nonmotor features of PD. The scales are now titled; (1) nonmotor experiences of daily living (13 items), (2) motor experiences of daily living (13 items), (3) motor examination (18 items), and (4) motor complications (six items). Each subscale now has 0-4 ratings, where 0 = normal, 1 = slight, 2 = mild, 3 = moderate, and 4 = severe.
Here are some surveys that are specific to Parkinson’s and have the potential to be the “universal survey”.
PDQ-8 (long form is PDQ-39) Parkinson’s Disease Questionnaire
This is the survey used by Fox Insight for the Daily Living section of the survey. Yes, there really are only 8 questions on the PDQ-8. The longer PDQ-39 is primarily used in clinical trials . These surveys are used as a tool for the assessment of quality of life in Parkinson’s disease patients. Format is “in the last month due to PD, how often have you had [PD symptom]” Answer (Choose One): Never, Occasionally, Sometimes, Often, Always. (I continue to be mystified what is the difference between “Occasionally” and “Sometimes”.)
PRO-PD- Patient Reported Outcomes in Parkinson Disease
The Patient Reported Outcomes in Parkinson’s Disease (PRO-PD) is the cumulative score of 32 slider bars, each evaluating a common Parkinson’s disease symptom, both motor and non-motor. The slider scale is a continuum from 1 to 100. I’ll give a shoutout on this survey, because it was locally developed (around 2014) here in the Seattle area; one of the creators is the tremendously energetic and creative Laurie K. Mischley from Bastyr University, a local naturopathic institute.
PD PROP- Parkinson Disease Patient Reported Outcomes of Problems
PD-PROP was devised by Dr. Ira Shoulson to capture accounts of PD patients’ bothersome problems, and asks questions like:
–“What bothers you the most about your PD?”
–“In what way does this problem bother you by affecting your daily functioning?”
–Problem severity (0-1-2-3 categorical scale)
PDAQ-15- Parkinson’s Daily Activities Questionnaire-15
Another short questionnaire (the shorter, the more likely the respondent will fill out the whole thing). Penn Parkinson’s Daily Activities Questionnaire-15 (PDAQ-15) is a 15-item measure of cognitive instrumental activities of daily living derived from the original 50-item PDAQ. I never could find an example of how the questions were structured. Developed around 2014.
NMSQuest -Non-Motor Symptoms Questionnaire
This is the survey instrument Fox Insight uses to report non-motor symptoms. The format is “Have you experienced any of the following in the last month?”; yes/no for a list of 30 delightful non-motor symptoms, ranging from drooling to constipation.
And then there are surveys that measure attributes not specific to Parkinson’s:
PASE – Physical Activity Scale for the Elderly (PASE)
The questionnaire comprises section on leisure time activity, household activity and work-related activity. A mere 10 questions, it contains a personal favorite that I find difficult to believe people answer honestly. This question also presents challenges for those of us exercising in the, um, rain-dappled Pacific Northwest.
During the past 7 days, how often have you seen the sun?
[1.] SELDOM (1-2 DAYS)
[2.] SOMETIMES (3-4 DAYS)
[3.] OFTEN (5-7 DAYS)
GDS– Geriatric Depression Scale (Short Form)
Created in 1986. 15 questions, yes/no, how you felt over the past week
EQ-5D – EuroQuol Five Dimensions
This is another short survey, with five questions relating to your quality of life. You have three possible answers for how you are feeling TODAY. For instance:
— I have no problems in walking about
–I have some problems in walking about
–I am confined to bed
Other dimensions are Self Care [i.e., washing, dressing], Usual Activities (e.g. work, study, housework, family or leisure activities), Pain/Discomfort, and Anxiety/Depression.
The Edinburgh Handedness Inventory
And saving the best for last: Yes, this really is a survey for determining objectively whether one is left or right handed. It gives researchers context to understand responses to other surveys.