The View from Base Camp | Kate Willette - Blog - Reeve Foundation

As most of you know, the reason I write this blog is to deliver news about spinal cord injury research in a way that’s both accurate and accessible. My job is to read the latest peer-reviewed papers that involve efforts to make our lives better, and then share the progress (or lack of it) with all of you.

A paper that was just published in a journal called the Archives of Physical Medicine and Rehabilitation is very much about those kinds of efforts. As the best of these documents always do, this one stands like a sort of base camp for a major mountain climb – a place of clarity and regrouping. It already represents significant achievement, but also serves as a launching pad for the work to come.

What the authors, led by Sarah A. Morrison, PT, MBA, MHA, have achieved is fairly astonishing, given the obstacles that stand in the way of gathering the kind of information they managed to pull together.

Their goal was to deliver a very long course of standardized body-weight-supported locomotor training (BWSLT), and by “very long,” I mean a full 120 sessions. As the therapy progressed, technicians measured a surprising variety of changes, and then used their data to make an economic case for standardizing BWSLT.

That’s what the paper is about: answering the question of what would happen if this particular kind of rehab lasted longer. According to Morrison et al, “Two thirds of health insurance plans limit the annual therapy dose to 21.5 visits on average.”

The candidates for the project were people with chronic, stable injuries who were classified as either “C” or “D” on the AIS scale. These were men and women who had some muscles sort of working below their injury level;at the start of the training 60% of them couldn’t walk at all. The rest could, though slowly and mostly only with the aid of rolling walkers, crutches, and the like.

I think the reason this paper made me think of a base camp was that as I read it, I felt as if I were looking through binoculars at remembered points of passage. There was the doctor informing me that my husband would never walk again. There was the day a month or so later when I put my hand on his thigh and felt a single muscle move under my fingers. There was him, four years later, suspended over a treadmill in Gainesville, Florida, with three grad students attending him, one of them sitting braced at the bottom of his useless right leg and manually placing that foot over and over onto the moving belt. He did forty-five sessions over nine weeks, thousands of miles from home because it was the only place doing that kind of research and he knew he was very lucky to be there. This was an early study into BWSLT; it changed his way of being in the world.

Further up the trail was the moment in 2009 when I first heard of the NeuroRecovery Network (NRN). I was a guest at a meeting of scientists at the Reeve-Irvine Research Center in southern California, and though I didn’t understand it at the time, I was really hearing about progress in staking out a new path. CDRF invested in the NRN because the position of the Reeve Foundation has always been that one day scientists will find ways to improve function. When that day arrived, there would need to be specialized rehab. There would need to be a way to figure out what kinds of interventions were most effective. There would need to be standards of care. And – as my husband’s experience showed – for some injured people, the rehab all by itself would radically improve function.

So what is the NRN? It’s a collection of twelve rehab centers, located in the USA from New Jersey to California and at points in between. Here’s how it’s described elsewhere on this website:

Participants in the NRN become part of a network-wide database that documents comprehensive medical information about the progress of each patient. By collecting and analyzing this information, the NRN is able to accurately measure program outcomes and track the tangible impact of different therapies. Findings from the database are shared with the field at large through peer-reviewed publications in scientific journals.

Morrison and her partners have now done just that. Each one of their 69 subjects showed up for 120 sessions of BWSLT, all delivered in the same way and using the same equipment. This was possible because those NRN facilities were in place, the technicians and PTs staffing them were trained to a standard, and the equipment was ready to go. The path had been laid.

Here is just one of the many data points from Morrison’s paper, which I encourage you all to read for yourselves.

• Start: 42 of the 69 participants couldn’t walk at all.
• End: (120 sessions of BWSLT later) Of those 42, 22 still couldn’t walk … but 6 could get around with a rolling walker, 4 could use a standard walker, 8 could use a pair of crutches, and 2 could use a single cane. My husband, for the record, began his training able to move around not-quite-safely with a pair of crutches. At the end, he was moving smoothly through the community with a single cane.

A major finding in this paper is that many participants do not see significant improvement until they’ve made it halfway through the study. Some see their first gains only after 80 sessions. Insurance companies routinely limit access to physical therapy sessions, which makes sense if and only if extended treatment won’t make any difference. The assumption is that after a certain point, their customers will never get measurably better. This new, hard-won data is the first evidence that it’s in everybody’s interest to reimburse for much more BWSLT.

From Morrison et al:

We postulate that limiting therapy visits to 40 sessions would deny detectable improvements to 30% of patients for gait speed, 50% for gait endurance, and approximately 20% for balance. With a 20-visit limit, approximately 60% of patients may not attain real detectable improvements. (emphasis mine)

Walking is great, of course, but it’s not at the top of the list for many people living with injuries. The thing that few people outside our world understand, though, is that just as a spinal cord injury collapses multiple body systems all at once, gains in one kind of function come with unexpected gains elsewhere. Walking, for example, often comes with better sexual function, improved sphincter control, and knowing when the bladder needs to empty. In this study, a third of the men and women regained full sphincter control. As the authors point out, the sample size is too small to count on that kind of outcome, but I haven’t met anybody with an injury who doesn’t think that result deserves further study.

Fortunately, this base camp has been set up. The NRN’s work will make it possible to move forward, probably in ways we haven’t yet imagined.

Stay tuned.