The theme of this issue of O&P Business News centers on disabled sports. I thought I was naturally going to write something about the need for multiple prostheses to accommodate the needs of our athletically and recreationally minded patients, or perhaps the role of focused interface design for particular athletic events.
Instead, all I can think about is the discussion I had recently with a person (who shall remain nameless) regarding upper extremity outcomes and the highly experienced researchers involved in the project. The list was long and the credentials impressive — PhDs, OTs and such — only they forgot one thing: to include a prosthetist on their team. Nice.
Needless to say, I am a bit fired up and can’t get my mind off of this outcomes stuff. In keeping with the theme of this issue, I am determined to wrap a discussion of upper extremity outcomes into disabled sports. Just give me a little time to set it up.
American gladiators
My company recently received a call from a casting agent regarding the TV show American Gladiators. They want to do a show involving athletes who wear prostheses and the kicker is they have to play with the big boys and girls “as is.” In other words, no special allowances for the athletes. No special activities, no “handicap,” no nothing. I think this is awesome, and the calls we have received from athletes from all over the country who want to take on this challenge have been not only astounding, but just plain heartwarming. It made me think: we have come a long way since I first entered the field in the mid-1980s.
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Instead of solely focusing on activities of daily living (ADLs), prosthetic wearers are starting to pursue their dreams, namely, life beyond combing their hair, dressing themselves and bathing. Rather than allowing their life to revolve around their prostheses, they demand their prostheses adapt to their life. While it can be argued that this shift has predominantly occurred due to the advent of new technology, I will argue that it has as much, if not more, to do with a change in attitude — a change in attitude not only of the wearers themselves, but of prosthetists, the allied health community, payers, the media and the general public.
Patient mentors
We cannot disregard the role that patient mentors and their respective media coverage have played in this paradigm shift. If Bethany Hamilton and Aaron Ralston had not been the incredible athletes they were, and if their exploits and the circumstances surrounding their traumatic experiences were not trumpeted in the media, I do not think the prosthetic community would be as far along as it is now.
My work on the show ER is a testament to the changes in attitudes of the general public, which gave the script writers and producers the confidence to believe the viewers would respond enthusiastically to a main character (the infamous Dr. Romano) with an amputation. Individuals like Bob Radocy, who not only live the dream but make it possible for others to do so as well, have been in the game for a long time now, though only recently have recreational and athletic pursuits started to go mainstream.
The Internet has allowed like-minded individuals to truly inspire one another like never before. The X-games and now American Gladiators are a testament to changing public perceptions. Finally, the Iraq and Afghanistan conflicts and the resulting projects from the Defense Advanced Research Projects Agency (DARPA) have ushered in a new era of awareness and the demand for improved functionality.
The usual suspects
And yet, all of the outcomes studies that I am aware of currently taking shape for upper extremity wearers are focused on the same old functional tasks, which I refer to as the “usual suspects”: continence, eating, grooming, bathing, dressing, toileting, home management, functional mobility/transfers and meal preparation. The last time I checked there was a lot more to daily living, at least for some of us, than those tasks. Who defined “daily living” in the first place?
Have we changed the list of functional tasks to account for the dynamic nature of the patient goals? Do we need to take a fresh look at ADLs, and perhaps come to the understanding that ADLs are too narrow in their scope? A metric based solely on a narrowly focused set of similar tasks, which does not allow any adjustment for measuring an individual’s priorities or a task’s personal significance is flawed by its very nature.
Have our illustrious researchers put validity before realism? Does it make sense to assume that ADLs are the goal of every prosthetic wearer and that all prostheses should be judged by this metric?
How does one categorize the outcome of the individual who does not use a prosthesis of any kind for traditional ADLs but wins the gold medal in the event of their choice with their adaptive prosthesis at the Paralympics? Perhaps for this individual, the pursuit of athletic superiority is more important than using their prosthesis to brush their teeth or comb their hair. Should we not expand our metrics to allow for the freedom of individual choice and the pursuit of one’s own personal set of important achievements?
Problems with outcomes studies
Every outcome study I am aware of either assumes a level playing field or discounts the importance of what the patient brings to the table before being assessed and subsequently fit with a prosthesis or prostheses. In other words, we fit the patient and then start paying attention to the results.
This is ridiculous. There are many things wrong with this approach, but the bottom line is: how can you possibly lump all the personalities of the subjects into one group and then expect your outcomes data to have validity? You can’t. I don’t care what elaborate validation procedures and formulas you use to justify your results.
My advice is to stop what you are doing and rethink the program. You might want to consider variables such as behavioral tendencies, personality traits, attitudes, prior experiences and preconceived notions and how these might impact prosthetic outcomes. Sometimes these indices should be considered irrespective of the prostheses used, and sometimes the prosthetic system or control strategy used is a trigger by which these personal attributes play an even more significant role in affecting outcomes. Who knows? Right now we don’t, but we should. And the only way we are going to find out is if we create an instrument to delineate these important factors and categorize them so we can determine their impact on outcomes.
Back to basics
Sometimes, it’s the simple things that make the difference.
For example, say I presented just one outcome to a payer: that 98.5% of my patients are still wearing their prosthesis, no matter for what, how frequently or for how long, while my competitors’ percentages are markedly lower. My guess is most researchers would say my outcome is invalid, and yet it is probable that I am doing something right, something that is making the difference.
Only a prosthetist could comprehend the significance of a person willing to go through the hassle of stuffing their arm into a hot “socket,” strapping on cables and harnessing, and then walking around with something so heavy and so limited in capability as our current technology allows… when they could just forget the hassle and leave it in the closet.
If we had started measuring just this one simple outcome 30 years ago, we would have quickly identified winners and losers regarding clinical protocol and the important data to focus on during assessment.
Instead, we as a community have waited for decades for the “professionals” to come out with their incredibly complex (but valid, of course) tools that we will be able to punch holes through a mile wide.
So researchers, please take a step back and ask yourselves, how valid are our tools if we base them on a single description of a human as a blank slate, that if only we perform steps one through twelve, we will achieve success? I know some of these instruments actually inquire about previous prosthetic experience, but this does not go far enough.
Human outcomes
In the near future, I will be presenting, along with other colleagues, an instrument that actually instills the human element into the equation before they receive their prosthesis. We understand that who you are matters as much as what you get and how it is delivered. There are probably a few outcomes projects that have taken this into consideration, at least in part, but I have not heard of any.
I will call on a few PhD wizards to check my team’s work, just to be sure it is “valid.”
In conclusion, in addition to satisfying our payers’ demands for hard numbers, we need to ascertain what really matters to our patients. We then need to find out who they are and their personal and mental attributes that may suggest how we should adjust the clinical protocol to maximize their personal, individualized rehabilitation strategy. Then we will be able to truly judge outcomes in a patient’s actual life.
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