Have you ever heard of the PSP Quality of Life Scale (PSP-QoL)?  It’s widely accepted among researchers, but with 45 questions, each rated on a 0-4 scale plus one question rated on a 0-100 scale, the 30 minutes it takes to administer is just too long.  Still, the PSP-QoL is used in most clinical treatment trials, just not as the primary outcome measure.  Of its 45 items, 22 are motor (including eye movements) and 23 are cognitive and behavioral.  The total score correlates with the PSP Rating Scale (the usual primary outcome measure in clinical trials) to a high degree, with a correlation coefficient of 0.65, where 1.00 is perfect correlation and 0 indicates a random relationship.  That’s considered very good, because you don’t want the secondary measure to correlate perfectly with the primary – you want it to provide additional information.

Now, a group of German neurologists has figured out how to streamline the PSP-QoL down to 12 items:  7 motor and 5 cognitive/behavioral.  They call it the “PSP-ShoQoL.”

The correlation with the PSP Rating Scale is 0.51 (still a good figure) and the correlation with the original PSP-QoL is 0.93.  That means that the short version can be used in place of the original for most purposes.  The PSP-ShoQoL progresses over time just as the original does, which means that it can be used to help decide if a treatment slows the progression of PSP over a period such as a year.

Here are the items in the short version, each rated 0: no problem, 1: slight problem, 2: moderate problem, 3: marked problem, or 4: extreme problem.

MOTOR DIFFICULTY: Do you have difficulty . . .

Grooming, washing or dressing yourself?

Doing things around the house such as housework or do-it-yourself projects?

Using public transport?

Enjoying active leisure activities including gardening or walking?

Climbing stairs?

Using the toilet independently?

Walking?

COGNITIVE AND BEHAVIORAL DIFFICULTY: Have you . . .

Found your thinking is muddled?

Felt not motivated to do things?

Felt confused?

Felt anxious?

Felt your relationships with family members has changed?

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I doubt that you will be designing a formal clinical trial any time soon, so why am I telling you about this scale?  So that in preparation for each visit with your neurologist, you can consider completing it on your own or with help (it’s designed for either).  Your neurologist could then get a nice, concise picture of the quality of your life and hopefully integrate that information into their recommendations.  It saves time for questions, emotional support and other critical things that are hard to fit into a 20- or 30-minute visit.