Hi Phil,
I think the "preferred" scale is yet another... UPDRS...
http://neurosurgery.mgh.harvard.edu/pdstages.htm
Secondly... reread the Schwab & England and you will see they consider
100% to be OK (completely ind.) & Zero % to be bedridden... so 40% is ??
Phil, I think you hit the nail on the head when you said "Perhaps the
independence scale should be used as a measure of independence only,
and not of progression."
In response to your question " Shouldn't progression always be rated
with the pwp unmedicated?" it seems elementary to me...
When my meds are working my progression is "masked" so progression
should be assessed "off meds" in my mind.
cheers .......... murray
On 8 Mar 00 at 0:41, Phil Tompkins wrote:
> For the topic of PD prognosis and progression Camilla posted two
> of the PD rating scales, Hoehn & Yahr and the Independence
> Assessment Scale . I believe that there are some problems with
> the use of at least one of these scales as an indicator of disease
> progression.
>
> There is a big discrepancy between the scales regarding
> "independence" and, perhaps, linearity. At Hoehn & Yahr stage 4,
> which is 80% of the way to the final stage, a pwp has "severe
> disability" but is "still" able to "function independently." On the
> Independence Assessment Scale a pwp only 40% of the way to
> the final stage already has "some dependency" ("some chores
> [are] impossible") and a pwp is "very dependent" 60% of the way.
>
> Independence doesn't seem to me to be a good indicator of
> progression. I think one can be more or less independent at the
> same level of disease progression by using or not using certain
> methods and assistive devices and even by virture of attitude and
> learned behavior patterns. Perhaps the independence scale should
> be used as a measure of independence only, and not of
> progression. The Hoehn & Yahr scale seems to be a better
> indicator of disease pathology because it refers to symptoms.
>
> Further, regarding the effect of medication, if a pwp is at different
> levels on a scale depending on medication, then the ratings show
> the effects of or responses to medication, not disease progression.
> Shouldn't progression always be rated with the pwp unmedicated?
>
> Has anyone else any thoughts about this?
>
> Phil Tompkins
> Hoboken NJ
> age 62/dx 1990
>
>
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