ALSFRS-R is not very good

[Alex123]

I have seen many times a version of the ALSFRS that does not change the questions about cutting food and handling utensils when the person is on a feeding tube. I have not seen the original papers that may have been published about the revised ALSFRS, so I don't know if this is a flaw in the original design or people (doctors) using it fail to implement it correctly.

When I saw the way it was implemented by Patients Like Me , I noticed that it was much better. If the patient checks the box that says he/she is on a feeding tube and receives no food through the mouth, then the questions about cutting food change and refer to the dexterity of the patient in feeding him/herself using the feeding tube. Even that could be questioned, but I think it is better that way.

Also the respiratory part has it's flaws. Besides inconsistencies in the way the questions are asked, I think this functional rating could be a little more detailed asking questions that might still be easy to answer by most patients. With that greater detail, the precision could also be increased, and instead of 48 points, we could have 100 points or more.

Of course even if we came up with a better system, it would be very hard to convince the "medical establishment" about the benefits of changing it, specially if the idea is proposed by "lay people" without PhDs. And if they did decide to change it, probably it would take many, many years to be implemented.

But anyway, as this is something that I have had in my mind for some time, I was wondering if some other PALS and CALS are also find the ALSFRS not as good as it could be. It'll be interesting to see different opinions on this. If you have seen some article that has been published on this, maybe you can post a link to it.

 

[lgelb]

The scale has many flaws, first among them the categorical nature of the variables. Other outcome measures are being used; however, it is the FDA that drives its continued use in clinical trials seeking US approval of a therapy (as an inclusion/exclusion criterion and a primary or secondary endpoint).

Admittedly, new outcome measures have and will be brought to the FDA in other diseases, but it generally costs a couple of million to do validation studies to justify abandoning one for the other and I don't know anyone in ALS with that kind of cash who'd be willing to part with it for that reason.

Apart from those uses, there is little reason to pay attention to the scale at all.

 

[gooseberry]

To me, the problem is the subjective nature of it. If asked to demonstrate the skill and direction observation of it, the scale would be more objective.