I’m in awe of the scientific creativity and astuteness of the researchers whose work I feature in this blog. My own original work is more modest — but has its uses. In fact, hardly a week goes by without a publication of a research project using the PSP Rating Scale. This post is a shameless attempt to evangelize for it. Click here to download the PSPRS form.
Since my statistician colleague Pam Ohman-Strickland and I published it in 2007, the PSPRS has gradually become the standard way to quantify overall symptomatology and disability in clinical research in PSP. It is equally useful in routine clinical care and requires only 10 minutes to perform. It’s not copyrighted.
Yes, the Unified Parkinsonism Disability Rating Scale, the standard scale for PD, has been validated in PSP, but has nothing about frontal behavioral signs, eye movements, sleep and some other things that are important in PSP. The PSPRS has a nice, round 100 possible points divided into six sections and 28 items. Rather than attempting to rate every possible feature of PSP with equal emphasis, the items’ relative importance in the PSPRS mirrors that in the most common form of PSP itself. This design feature results in the PSPRS progressing about 11 points per year regardless of the magnitude of the score or disease duration. The score is useful as a prognostic indicator and I’m presently working on refining that.
The PSPRS requires some skill in the neurological exam, so cannot be applied by patients or caregivers. But they can bring it to the attention of their neurologists. Click here for the original paper in Brain that explains the details of how to administer the PSPRS.
Like everyone, I’m hoping for a more objective, reproducible test to quantify the state of neural degeneration in PSP – maybe something with spinal fluid or MRI. But until then, the PSPRS is the best we’ve got and it’s dirt cheap.
PSP Blog 
I have actively pursued the use of this scale with several neurologists for my mom (Northwestern University, University of Illinois, and RUSH University) and they ALL basically declined to use it for various reasons. One said, “I will go thru it & mark it but keep in mind, I have not received any training on the use & application of this.” Another said, we don’t use “scales” here because every patient is an individual and you can’t really quantify those attributes. Is this all a load of crap? Did we see the wrong doctors? or do they have their egos so far up where the sun doesn’t shine that it’s beneath them to use it? or are they thinking: what is the point? there’s nothing that can be done. The day after day after day FRUSTRATION of facing an illness that has zero treatment is rigorous, slow torture and absolutely inhumane. No one understands this unless it is happening to one of their loved ones.
At a recent visit with Dr. Golbe, I had the privilege of getting first-hand information on the PSPRS. After some thought, question: Do the symptoms of this disease follow a logical and/or consistent progression? If not, and with respect to every patient being different, could the program determine the likelihood of when a symptom might rear its head? If they do follow a progression, or if the program can help determine what might come next, it would be so helpful to families and caregivers to have an approximate timeline of milestones to be expected relative to the patient’s score. To have insight as to what might be expected and when would greatly assist in planning for appropriate care. The waiting game and wondering if what we’re experiencing is “normal” is torture.
I would hope that more neurologists are embracing this system to help their patients. Thank you for developing the PSPRS, and for all the great information posted in this blog.
I’m glad that you’ve found the PSPRS data helpful. I’m working on creating better prognostic capability for the scale. I expect to have some results in a couple of months. It’s a project I’ve been working on for several years. It will use data I’ve gathered from all of my PSP patients since 1995.
My father had PSP and his brother did also. I suspect their uncle did as well. I believe I have it although I have not yet been diagnosed by a Neurologist because I dont have insurance. There is so much that is unknown about this disease.