Golbe's PSP rating scale and staging system


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Golbe's PSP rating scale and staging system

Postby gatorchin3 » Sun Aug 06, 2006 12:42 am

I can't get the search form to come up so please excuse me for asking something that has probably been discussed in the past, but I am wondering about the meaning of Dr. Golbe's rating scale numbers for patients with PSP.

http://www.mdvu.org/pdf/psp_rs.pdf

I'm definitely guessing at some of the numbers, but I get about 54 for my mom on the rating scale, and a definite 4 on the staging system. Does that tell me anything, or is it just a way of quantifying changes between neurological exams?

Thanks,
Jackie J
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Postby momppsp » Sun Aug 06, 2006 8:12 am

Jackie: Thanks for the website. I've never seen this before and it's very interesting. As you know probably, you can't go by strict stages as they can be all over the different stages. Everyone is different. Even with Mom after 8-9 years, she is better than some PWPSP at 2 years and worse at others. I truly believe the diagnoisis of PSP all comes down to the eye test as PSP mimics sooo many diseases. Has the eye test been done? You can do it yourself and bring it up to the doctor.
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Postby Jeanie Kelley » Sun Aug 06, 2006 4:02 pm

This is very informative. Thank you, Jackie
Jeanie (another one)
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Postby eplowman » Sun Aug 06, 2006 5:28 pm

Jackie,

Interesting discovery.

Dr. Golbe fashioned the PSP Rating Scale and Staging System almost 10 years ago. It is widely used by doctors and researchers to mark progress of symptoms. Researchers often use it when testing the effectiveness of a new drug. They will administer the test; the first time establishes a baseline. Then they will redo the test in three- or six-month intervals. The idea is to compare ratings of the latest test against the baseline results to see which symptoms may have improved, stayed the same, or worsened, and how long it took to see change for better or for worse.

It is not an exact tracking method because of the subjective element in some "borderline" flip-a-coin choices or when examiners change or when caregivers or PwPSP give inaccurate representations, but overall, it provides a useful assessment.

I wish I had discovered it years ago. Even lay people can use it to track progress of symptoms, I think. I printed a copy of the questionaire today, answered the questions (several I was unsure about but chose an answer anyway), and then I sat down with wife Rose and had her answer them, too, as I read her the Q's. Remarkably, our answers were the same on most questions. Diagnosed 7 yrs ago, she is in what I call advanced PSP. So her total score of 74 (including max'ed out ocular and gait scores) is understandable, as is her '5' (worst) on the staging system (gait) analysis.

Then together we went back over the test, =trying= to remember how she would have scored 6 or 8 months ago. We probably would have scored closer to an 80. Recent improvement in swallowing and choking and in limb movement would account for the slightly lower score of 74.

BUT we see a glimmer of hope even in the worst-level 4 readings. For example, Rose can now occasionally open her eyelids voluntarily, follow my movements sideways, and identify the number of fingers I hold up, most colors, and some objects -- if they are not low. She can't see downward during these fleeting periods of distorted vision. They last for maybe only 20 minutes or so at most, and they don't happen frequently, but hey, we still jump up and down and cheer because she could not see at all for months. The occasional short-lived changes are not yet enough for her to move from a 4 to a 3.

Also, we've seen an apparent slowdown in progress, or worsening, of symptoms -- she's been on her current "plateau" for an unusually long period.

You and others here may want to download and print out the ratings questionaire, and score your PwPSP. Then do it again at six-month intervals to track changes. A useful reference tool.

NOTE: You need Adobe Acrobat on your system to view the file once you click to read or download it. Click on the Print icon in Acrobat to print it out. Several Adobe Acrobat viewers are available online (no charge).
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Postby gatorchin3 » Sun Aug 06, 2006 11:40 pm

Ed,
I didn't realize that you had seen improvement in Rose's vision. How exciting for her to be able to see again, even if it is only occasionally and for brief periods. That is some hope to give to those who have also lost their sight.

My mom is having a hard time seeing tv and she can no longer read, but a lot of it is due to a cataract in her left eye. I'm hoping she will be much better once that is removed. It will be disheartening if there is not much improvement. She sees the eye doctor this week for the evaluation.

Thank you for the information on Dr. Golbe's rating scale. I'll try to do one every 6 months. I'm very interested to see what the neurologist will rate her, if the form is in fact used in his practice.

Jackie J
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Postby eplowman » Mon Aug 07, 2006 12:48 am

Jackie,

Do take along copies of basic PSP information for the eye doctor. He/she needs to understand that vision problems may lie beyond the eyes and deep in the brain. You may have heard me say Rose has 20/20 vision, and there is nothing wrong with the eye structures, according to the eye specialists; she just can't see.

Over the long term, prepare to be disheartened (to use your word); MANY PSP patients suffer severe vision problems. I hope you won't see it happen in your mom, but assume it will and plan accordingly. Rejoice and count your blessings if it doesn't happen.

As for the Golbe questionaire/ratings chart:

I doubt many doctors beyond movement disorder specialists know about the chart. Even our movement disorder neuro doesn't use it. If I had known about it and suggested she reassess every six months, she probably would have done it. But I think most specialists familiar with PSP probably figure "what's the use -- it's not going to get better, and it WILL get progressively worse."

It =would= have more use for researchers, though.

You can conduct the ratings assessment yourself. After all, a doc would have to rely on input from the PwPSP or caregiver to get a clear picture for a solid assessment anyway.

BTW, the Golbe ratings chart does not refer to the same thing that a number of folks here mention when they talk about the "four stages" of PSP. Two lay women drew up a list of PSP symptoms and attempted to categorize them into stages of PSP progress. However, even they acknowledged that the nature and progress of symptoms differ among PwPSP (for example, speech difficulties arise early in the disease for some patients but much later in others).

I personally use a vaguely defined categorization of Early, Middle, and Advanced stage, based mostly on the length of time from the diagnosis (including earlier misdiagnosis) to the present AND on the extent and severity of symptoms.

But don't ask me what the boundaries are between those three categories.[:D]

ed p.
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Postby Robin » Fri Nov 20, 2009 12:59 am

In preparing the notes from tonight's webinar by Dr. Golbe, I was digging around for the article that describes how to interpret his "PSP Rating Scale." The article is now available online for free. See:

http://brain.oxfordjournals.org/cgi/con ... 130/6/1552 --> HTML version
http://brain.oxfordjournals.org/cgi/reprint/130/6/1552 --> PDF version

On the PDF, see pages 4-6 (Table 2) for comments and instructions on how to fill out the scale. Table 8 (page 9 of the PDF) provides the estimated survival time based upon the rating scale score.

You can find the two-page scale itself here:
http://psp.org/includes/downloads/ratingscale.pdf
(This link updated on 3/3/10. Everytime CurePSP "improves" its website, the links get broken.)

In the case of my dad, I found the rating scale quite accurate. (PSP was confirmed upon brain autopsy.)

It seems that Ed did not find this level of accuracy with the scale. Any others?
Last edited by Robin on Wed Mar 03, 2010 5:53 pm, edited 1 time in total.
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Postby JudyT » Fri Nov 20, 2009 8:38 am

I remember filling this out for my dad just before he went into the nursing home. It was failry accurate in our case as well. Dad's PSP was confirmed by autopsy.
Judy T. - Dad with PSP (Born 11/21/25 - Died 3/11/2009, Dx'd 1998)
For I know the plans I have for you, declares the Lord, plans to prosper and not to harm you, plans to give you hope and a future. Jer 29:11
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Postby Robin » Wed Aug 25, 2010 3:27 pm

Someone sent me this note about the rating scale:

"I read about the scale and thought it might be helpful in assessing the level of care and future level of care that [my family member] might need.

I tried to informally do the test myself giving [my family member] 1's in areas that I did not understand or could not assess and came up with a 42."


My reply: I think it will be hard to use the scale to get an assessment of the current level of care your family member requires. And I don't see how there's any way to use the scale to gauge future care requirements.

There are still other good reasons to do the scale. One is that if you intend to donate your family member's brain upon death, it's very good to have the rating scale assessments over time in the medical record.

As you know, a 42 is a very low score. Probably a very high percentage of people with that score live well more than 6 months.
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