It is with an increasing anxiety that I wait for that one glimmer of hope, that one small nod towards a true understanding of the big picture that will hail the arrival of an outcomes tool for upper limb patients that gets it; a measure that drives to the heart of the matter. At the least, I await news of an outcomes tool that not only acknowledges the glaring deficiency that is at the core of every known tool to date but actually attempts to do something to overcome it.
A complete picture
When I speak about a more complete outcomes tool, I am not talking about quality of life surveys or prosthetic experience questionnaires. What I am talking about is a tool that recognizes that variables exist that are determinant, drawing a solid, irrefutable line to outcomes that are resolutely ignored by many researchers. I stand amazed at the incessant demand for validity with complete indifference toward the other half of the picture.
“We must have a statistically valid instrument and – what’s that you say? Psychological impact of childhood? Aversion to the mere sight of a hook because of a bad experience? Fear of technology? We can not address these abstract thoughts. We must only address certain questions to which we can assign numbers or that someone else has asked before. What do you mean a standardized approach to assessment? Why, we have put together the most robust tools known to man, you can not question our methods. They are irrefutable. They must be valid; they have been certified by PhDs the world over. I do not care that they only address a limited scope of reality. We can not cover everything.”
If this is the researchers response, he or she is absolutely right.
Mind over matter
These tools can not possibly address the infinite number of variables that affect outcomes. But it would be a great start to at least have a disclaimer recognizing this fact in large, bold print at the top of each outcomes tool, wouldn’t it?
I do not care how accurate or valid or exhaustively analyzed the measures are, if they do not attempt to understand the minds of those individuals on either side of the receiver-provider line, if they do not assess the language and demeanor used in the evaluation process, if they do not bother to ask what went through the patient’s mind as they entered the prosthetic facility for the first time, then how on earth do we think a true picture is being built?
I have to provide the simplest of examples to get you to understand just how poorly we are addressing the true nature of prosthetic outcomes.
One patient approaches the prosthetic process hoping the definitive prosthesis can offer minimal assistance to the sound hand, while another patient arrives with the thought that prosthetic technology is light years ahead of reality and that soon, perhaps within the hour, he or she will have an arm that was even better than the one that was lost. Each patient comes to see the same prosthetist. Each patient presents the same level of limb loss or absence, at the same time of day, the same day of week, the same prescription, the same prosthetic strategy applied.
There is a chance the outcomes of these two cases might be similar. However, given the scenario just described and their ideas going into the prosthetic fitting, do you think there might be a different outcome for each case? They might experience identical prosthetic outcomes but how that degree of success meets his or her preconceived notions might change the true outcome tremendously.
Keep in mind this is just one, extremely obvious case. Now think of the hundreds, thousands, even infinite number of variables large and small that interact, amalgamate if you will, into the outcomes brew that forms a different prosthetic horizon for each individual patient.
Currently, there is no tool that I am aware of that sufficiently and comprehensively analyzes the “psychological variables of approach.” By this I mean the infinitely important factors leading up to and including the first visit to a prosthetist, far in advance of device delivery and post-delivery assessment.
This comprehensive tool would measure and assess not just the patient’s quality of life or level of self-esteem, but also the dynamic interplay of those feelings as they encounter the clinician giving the prosthetic evaluation.
What was said? What terminology was used? Were all the options thoroughly discussed and did the prosthetist show or have a bias?
Does anyone even care exactly what the prosthetist says or how he or she says it to the patient? Would the way something was introduced to an individual during a fitting perhaps have a profound effect on how that device or process is perceived? Is this something we should be considering when we develop outcomes measures?
I remember when I invited a prominent prosthetist to attend a State of the Science Conference on standardizing the upper limb assessment. I wanted to gauge his and others’ level of interest and commitment. I was told he was not interested unless there was evidence of valid research supporting it. This is why so little advancement in our profession takes place. We have to start with a conversation, even if – gulp – there is no direct evidence available to back up a theory. After all, what exactly is “science?”
Out of the box
According to the dictionary, science is the observation, identification, description, experimental investigation and theoretical explanation of phenomena.
If I have to shout it from the treetops or the tallest building, if I have to fly a banner across the sky in my Cessna, if I have to get down on my knees and beg, I will do it. Please, send me some tools with teeth in them, tools that take a bigger bite of reality than a mere nibble.
Show me that you care enough to consider what lies beyond the known horizon. Take a risk, explore, come back and tell us what you have found. Somebody just jump in and tell us the water’s fine, tell us that you have heard us loud and clear and that despite your misgivings regarding the ability to create valid questions out of such a complex topic you are willing to give it a try.
I know supposition is a four-letter word to many, but without it we get nowhere. Yes, we have outcomes measures galore. I was amazed and in awe at the number and scope of outcomes tools that are currently in use. Upon a closer look, I was subsequently amazed at how limited their scope can be at times.
We need to consider stepping outside of the box. It is a fine and sturdy box as far as cardboard goes, but a box nonetheless. Look at all the personal interactions in the prosthetic process. Dissect the intricate dance that takes place among the individuals involved. Do not just focus on the device, the patient’s previous prosthetic experience, or whether they have assistance at home or not. What is the baggage going in? Who is adding more and who is taking some away and how are they doing it?
These are the questions, on top of all the other fine questions you have already validated, that need to be addressed next. I am halfway up the tree. Please do not make me climb all the way to the top.