Some of you might remember that there was a Neurology ’06 article on “Measuring quality of life in PSP: the PSP-QoL.” The UK/US authors of that article used a 45-item PSP Quality of Life scale (PSP-QoL) measuring the physical (22 items) and mental (23 items) health impact of PSP. (That 45-item scale is not part of that article and I haven’t been able to obtain it…yet.) I emailed you excerpts of the article just recently (June ’07).
I learned about a year ago that Dr. Lawrence Golbe, a US expert in PSP, had developed a clinical rating scale for PSP. An AZ-based caregiver noted that her mother’s neurologist was using the scale, and that it had both Dr. Golbe’s name and the Society for PSP’s name at the top. Dr. Golbe is the chair of the Scientific Advisory Board for CurePSP, the new name for the Society. I got a copy of the rating scale but had no idea how to use it.
Then, in April ’07 I saw a PubMed abstract of an article written by Dr. Golbe and another researcher on his 28-item rating scale. The article, in the journal Brain, contains the rating scale, instructions on how to complete it, and probability figures associated with survival times based on the rating.
Dr. Golbe believes the scale has prognostic value — that is, it can be used to determine likely survival time. It is not a diagnostic scale; it can’t be used to determine if someone has PSP.
What follows is the abstract from the Golbe article in Brain ’07.
Robin
Editor’s Update: The full article is now available online at no charge.
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Brain. 2007 Jun;130(Pt 6):1552-65. Epub 2007 Apr 2.
A clinical rating scale for progressive supranuclear palsy.
Golbe LI, Ohman-Strickland PA.
Neurology, Robert Wood Johnson Medical School, University of Medicine and Dentistry of New Jersey, Brunswick, NJ.
We devised a Progressive Supranuclear Palsy (PSP) Rating Scale comprising 28 items in six categories: daily activities (by history), behaviour, bulbar, ocular motor, limb motor and gait/midline. Scores range from 0 to 100, each item graded 0-2 (six items) or 0-4 (22 items). Inter-rater reliability is good, with intra-class correlation coefficient for the overall scale of 0.86 (95% CI 0.65-0.98). A single examiner applied the PSPRS at every visit for 162 patients. Mean rate of progression was 11.3 (+/-11.0) points per year. Neither onset age nor gender correlated well with rate of progression. Median actuarially corrected survival was 7.3 years. The PSPRS score was a good independent predictor of subsequent survival (P < 0.0001). For example, for patients with scores from 40 to 49, 3-year survival was 41.9% (95% CI 31.0-56.6) but 4-year survival was only 17.9% (95% CI 10.2-31.5). For those patients, likelihood or retaining some gait function was 51.7% (40.0-66.9) at 1 year but only 6.5% (1.8-23.5) at 3 years. We conclude that the PSPRS is a practical measure that is sensitive to disease progression and could be useful as a dependent variable in observational or interventional trials and as an indicator of prognosis in clinical practice.
(PSPRS = PSP Rating Scale)
PubMed ID#: 17405767 (see pubmed.gov for abstract)