If the drug had a significantly useful effect I think it very unlikely that questionnaires would fail to pick up a signal even if they were less than ideal.
I have some thoughts on this I’ve been kicking around and this seems like as good of a thread as any to share them. I have long COVID with primarily ANS and neuro symptoms. I feel awful, but it’s really hard to put many of my symptoms into words. The worst symptoms are a collection feelings, which I had never felt before LC. I could say malaise, but it really doesn’t feel like any other malaise I’ve experienced. It would be a meaningless word in much the same way “inflammation” becomes meaningless when it’s used so broadly it doesn’t really mean inflammation anymore.
I’ve had a good response to Pemgarda with similar timelines following two infusisions. However, a positive response short of a full recovery is so much more difficult to subjectively measure than I would have ever anticipated, and that is with the benefit of experiencing it and feeling it first hand. I can only imagine how much murkier it gets when you try to quantify things like malaise with a questionnaire. I’m skeptical that we can really measure improvement in this way. I honestly wonder if gauging a patient’s desire to continue the treatment, without any other measurements, would be more effective.
What I didn’t anticipate is that when you feel better, your mind starts playing tricks on you. You quickly forget how bad you felt a few weeks ago and you’re not a reliable narrator. In my case, it’s almost like my brain prevents me from fully recalling the depths of suffering. I’m aware it happened, but my mind will not relive it to allow me to compare. Then, if both the disease and the treatment include frequent fluctuations in symptoms, it becomes very hard to get a handle on how bad you felt last month v. today.
In my case, I had some immediate improvements that felt pretty objective. Like being able to bend over without feeling like I would pass out for the first time in two years. Or suddenly being able to drink coffee without waves of nausea. Even then, I started to question the effect a few months later as symptoms persisted and continued to wax and wane. It just becomes very hard to remember and compare the level of suffering before and after treatment even when you’ve been incredibly unwell.
I’m not sure the above really does a good job at translating the patient experience I’m trying to convey. It’s just incredibly hard to put into words. However, I really think this is an important idea to consider. Put simply, something in the range of a 50% improvement is not nearly as black and white as one would imagine, even when it’s happening in your own body. If I was asked to complete a questionnaire, and even assuming they asked the right questions, I think there is a very good chance that it would miss what have been very real benefits.
