CurePSP recently received an inquiry from a PSP caregiver who had evaluated the individual with PSP twice over a 6-month period using the PSP Rating Scale and needed some guidance in interpreting the results.  We had to tell them that the PSPRS is designed for use only by neurologists experienced in evaluating people with movement disorders and eye movement disorders, so the scores they generated cannot be relied on.  Besides, the second score was about 30 points (on the 100-point scale) worse than the first, and no one with PSP progresses that quickly.  So, they must have administered the PSPRS incorrectly.

People with PSP and their caregivers who ask about the PSPRS are advised to pass it along to their neurologists, who can decide if they want to use it.  The PSPRS is still the world-wide standard “outcome measure” for PSP treatment trials and the rating standard for observational research.  But it has reached only limited acceptance in ordinary neurological practice outside of academic settings because it takes 10-15 minutes to apply, and most neurologists don’t have that kind of time in a visit to devote to it.

But don’t despair, you neurological do-it-yourself-ers.  There’s a newer scale called the Cortico-Basal Functional Scale (CBFS), which is designed to be completed by the patient and caregiver and works just as well for PSP as for CBS.  It’s not quite as precise as the PSPRS because it relies only on subjective symptoms and experiences, but it’s still quite reliable in assessing the severity of PSP and tracking its progression.  It has more potential to be adopted by neurologists for routine care because it can be completed at home the day before the visit or even in the office waiting room. You can download it via the link above, complete the 31 multiple-choice questions and bring the completed form to your next neurology visit.