Page 15 - Mobility Management, June 2018

proof, nothing that shows on a large scale that [CRT] really works.”
A New Necessity
The FMA isn’t the industry’s only effort to measure the outcomes of CRT.
“There are studies out there that have been published,” Schmeler said. “We’ve had research. Sample sizes of some are fairly good. Some are small; some are mostly case studies, anecdotal.
“We talk till we’re blue in the face that a custom-fitted titanium ultralightweight wheelchair is really the best thing for a person with these conditions, and we think that everybody should just believe us. That’s what’s behind all of this. This is a necessity, and when money is short and policy makers have to make decisions about what to cover and what not to cover, there’s an unwritten formula that they use: ‘What are the political ramifica- tions against this group of people that we might be cutting? We have to decide if we’re going to cut funding for wheelchairs or funding for cancer. Which of these two groups has better research to show that what they do works? ’”
In that scenario, Schmeler said, CRT comes up short.
“We have two strikes against us. What are the political ramifications if you cut funding for people with disabil- ities? Well, it’s slim to none because this is a historically disempowered group of people: They are less likely to vote, be employed, or have money to lobby. And the people who serve them have limited research capabil- ities to support that what they do actually helps. If you look at some other area of healthcare, like women’s health — 50 percent of the population is female, they are employed, they do vote, and there is research to support treatment A vs. treatment B.
“That’s just reality, that’s how society functions.”
Creating the FMA
Trying to measure the outcomes of an industry — partic- ularly one that hasn’t been measured before on a large scale — is a formidable task. There were challenges just in figuring out what could and should be measured first.
“I had to put some parameters around it and ask how much do we want to bite off here,” Schmeler said. “I decided the best way to get large data was to have a questionnaire focused primarily on adults and focused
on adults who can self report accurately.” While the first sets of scores were provided solely by adults aged 18 and over, a “family-centered” version of the FMA is now available for children, as well as “anyone who could not accurately self-report their satisfaction for a myriad of reasons,” Schmeler said. He pointed out that some older children are capable of using the standard FMA, so deciding which of the two versions is better for a partic- ular client will be left to the clinician.
The FMA is just 10 questions long, but formulating those questions was a years-long process.
“Many years were spent measuring the accuracy of the tool,” Schmeler said. “In science, you can’t just make up a questionnaire. It has to go through a whole system- atic — what we call clinimetric — assessment. We have to look at all the psychometrics of the tool, so that we know we’re 80 percent certain that what [respondents] are saying is reality. And this tool’s gone through that.
“We know results we’re getting from the people, self reporting, are between 85 and 90 percent accurate. So we’re above the threshold.”
Among the questions the survey asks is the partici- pant’s diagnosis (see chart).
“There are about 40 diagnostic categories in our data set that you can pick from,” Schmeler said. “We decided just to report on the top 10. You can see here that spina bifida is 2.88 percent. Once we started getting below that, we were talking about 1 to 2 percent of the popula- tion. We have close to 1,200 cases now. As we’re getting more data, this top 10 is not changing anymore. We know we’ve hit saturation on diagnosis. We’re 99 percent sure that the majority of people who need complex rehab have a stroke, followed by neuromuscular disease, followed by cerebral palsy, followed by multiple sclerosis.
“This is helpful, because when we go to Congress
or policy makers, and they say, ‘You guys are those wheelchair people selling scooters,’ I say no — close to 80 percent of the people we are serving have strokes, neuromuscular diseases, spinal cord injury, and cerebral palsy. Here are our numbers. You’ll see in there osteoar- thritis is just shy of 5 percent, but this is a neuromuscular group.”
Not Research...Yet
Schmeler emphasized that these numbers can’t be cate- gorized as research.
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