In the last post, I stumbled across an outcomes measure that I hadn’t heard of. More importantly, this new-to-me outcomes measure is disease specific for a disease (ALS) for which I currently don’t have ANY disease specific outcome measures for in my toolbox. Naturally, I HAD to have it!
Side note: Ever since studying for the neurologic clinical specialist (NCS) exam, I’ve had a slight obsession with outcome measures. One of the things I had to do for the exam was study how to give and interpret A LOT of outcome measures. I’m an old fashion paper kind of gal, so I printed them all out and have them lovingly stored in a large binder on my desk at the clinic. (Never know what you might need!) This was reinforced at CSM in February, as one of the presenters mentioned that in each case a specialist should run 2-3 outcome measures, with at least 1 being disease specific and 1 being more general, in each case. As I read articles, and find new-to-me outcome measures, I add them to my “OM Toolbox”. So, like I said, I HAD to have it, so that I have something specific to ALS.
The ALS Functional Measure-Revised measure looks at function and due to the progressive nature of ALS, functional decline. What makes this “revised” is that they added 3 questions relating to respiratory function, to replace a previous 1 question. Which I think sounds like a good move, as respiratory difficulties are what end up causing death in this population– their breathing muscles quit. So with the addition of those 3 questions, the ALSFM-R correlated well with the old ALSFM scale, the Sickness Impact Scale (SIP) and forced vital capacity (FVC –the number 1 predictor of mortality in ALS.
Which brought up another thought: do I know how to assess or interpret forced vital capacity?
I was never taught this in PT school, but I do remember going over it in my training as a personal trainer. I also remember taking this test myself and it being surprisingly physically draining, even for myself as a competitive athlete at the time. I’m pretty sure I got light headed and nearly passed out. So I would definitely say do this sitting down. But what does this mean in the ALS population? Stay tuned….