The value of subjective patient reports

Yesterday I was speaking to one of my professors about the emerging receptivity to subjective patient reports in the scientific literature.

One of the big challenges being faced by cancer survivors are serious cognitive deficits, partly due to the effects of treatments and also to the effects of disease.  However, these deficits are often not addressed in the treatment that cancer survivors receive.  Neurological tests, such as the Boston Naming Test (where you have to say that a car is a "car" and a duck is a "duck"), often come back normal, and so -- with no objective measure of cognitive deficit -- individuals are being told that they do not have any problems.  They must be imaginary.  We used to (and still) do this with some pain sufferers.  If our methods cannot detect an underlying problem that would cause pain, we tell them they must not have any.  Their problems are "just in their heads".  Imaginary.

This is plainly ridiculous.  If a person says they are in pain, they are in pain.  In 1968, a new (well, it was new) definition of pain was introduced into the nursing field: "Pain is whatever the experiencing person says it is, existing whenever he says it does" (McCaffery, 1968).  I believe the same is true of deficits of complex functions like cognition.  If a person says they are not functioning as well as they used to, or as well as they should be, and we can't measure it -- too bad for our measurements!  The person has a real complaint, and it is our job to figure out how to improve the situation.


The greatest failures of science in my opinion occur when people fail to realize that their algorithms or models or measurements or theories are wrong.  When we are faced with information out in nature that does not fit in with our model, and we dismiss that information instead of our models.  We need to be building frameworks that CAN and DO include the information out in the world!  I was thrilled to hear of the 'revenge of the subjective' in health science!


Though we may not be able to measure a given problem at this time, if we have a good question to ask, we might be able to come up with a good answer.  The beauty of real problems is that they come with real solutions.  Just because we don't have the measurement yet doesn't mean we will never have it.

In the meanwhile, it is difficult to sit with the pain, the anxiety, and the anguish of knowing that people are suffering.  It can be equally difficult to know that some people who are complaining of certain kinds of pain, emotional or physical, are malingering and working the system for reasons sometimes good and often not.  But I believe that how we deal with these problems will end up defining who we are as a science, and that humanity and forbearance are our best bets for coming out on the other side unscathed.