I have some homework for you all: Make sure that the diagnosis of PSP has been accurately coded in the doctor’s records. 

Two researchers in Scotland, Diane Swallow and Carl Counsell, published a paper this week reporting that every single patient carrying the code for PSP (G23.1) did in fact have PSP on evaluation of their detailed records.  However, only 52% of the patients whose records showed clear PSP had that code recorded in their records.  In 45% of individuals with PSP, an incorrect code of G12.2 was recorded.  That’s the code for a condition called “progressive bulbar palsy,” which is a form of amyotrophic lateral sclerosis (ALS; Lou Gehrig disease) that affects the muscles of the face, mouth and throat disproportionately.  (The “bulb” is another term for the medulla, the part of the brain from which most of the nerves to those structures arise. It does look sort of like a light bulb or tulip bulb.) PGP is much more rare than PSP and does not include most of its features, but the reason for the confusion is obvious.

Why is this important? Because accurate statistics on PSP’s prevalence are used by for scientific researchers, medical care planners, government regulatory agencies, insurance companies, pharmaceutical companies, granting agencies, and philanthropists. 

So, next chance you have, ask the neurologist’s office clerk if the diagnosis of PSP rather than progressive bulbar palsy is listed in the medical record’s formal problem list and if the code assigned to it is in fact G23.1.  If it’s not, and if the clerk tells you that they don’t have the access necessary to fix it, make sure that they pass the information along to whoever does have that access, and then it’s your job follow up to make sure it’s been taken care of.