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By definition, practically every primary condition you’ll encounter as a seating & wheeled mobility clinician or ATP will be statistically rare, no matter how familiar it seems to you and your colleagues. Visit the National Organization for Rare Disorders (NORD) database (rarediseases.org), and you’ll find among its listings ALS, cerebral palsy, multiple sclerosis, various forms of muscular dystrophy, spina bifida and spinal muscular atrophy.
But one of the secondary conditions you’ll encounter in your clients is so common it doesn’t make the NORD list. Scoliosis is, in fact, commonly seen not only among your wheelchair-using clients, but also among the able bodied, some of whom might not even realize they have it, and may do little or nothing to treat it.
For the wheelchair user, however, scoliosis can be a condition that increasingly interferes with their lives, putting overall functionality at risk and negatively impacting other bodily functions.
The General Incidence of Scoliosis
Jay Doherty, OTR, ATP/SMS, senior clinical education manager, Eastern U.S., Quantum Rehab, calls scoliosis “absolutely something that we often see with seating & positioning.”
He adds, “Scoliosis is basically a curvature of the spine. Typically when we’re talking about scoliosis, we’re talking about a lateral curvature of the spine, but scoliosis can also have a rotary component to it with the spine. So the spine can be rotated.”
Generally speaking, scoliosis affects two to three percent of the population, according to a 2007 report from the American Association of Neurological Surgeons (AANS). That added up to between six and nine million people in the United States, though only a small fraction of those people were actually treated for their scoliosis via such interventions as braces or surgery.
The AANS report added that the most common age for scoliosis onset was from 10 to 15 years of age, and that scoliosis occurred equally in boys and girls, though girls were eight times more likely to require medical intervention.
But those general statistics and rates of required intervention don’t hold true for the clients you see every day.
Scoliosis & the Wheelchair User
Scoliosis — its causes, severity and progression — can be a very different story for people who use wheelchairs.
“By the time a patient is dependent on a wheelchair and a seating system for support, they already have some muscle imbalance,” says Cindi Petito, OTR/L, ATP, CAPS, president of Seating Solutions in Florida.
“Many of the folks we’re seating are actually folks with muscle imbalance or weakness,” Doherty says, “and gravity is constantly working on their bodies. So because of that, scoliosis tends to be fairly prevalent over time.”
So while scoliosis usually isn’t the reason your client is in his/her wheelchair, it is likely a side effect of the primary mobility-related condition.
“Scoliosis in my experience has always been a secondary complication to a primary problem,” Doherty says. “So whether it’s a progressive neurological condition, muscle imbalance or tonal issues like you have with cerebral palsy and traumatic brain injury, it’s typically a secondary complication of the original primary diagnosis. It can range from someone with a spinal cord injury that doesn’t have tone and muscle function below a certain level, but has scoliosis because of gravity, all the way to somebody who has tone, and the muscle tone is actually causing the scoliosis to progress.”
From there, scoliosis can diverge in how it presents and progresses, and many different factors can impact severity.
“The folks we work with are dealing with a disability or maybe even a disease process, and because of the weakness and the changes they have, [scoliosis] manifests itself in so many different ways,” Doherty says. “Where the scoliosis affects the spine is quite often different with each person. It could be a C curve throughout the spine. A lot of times we see an S curve, where you have a curvature in the lower spine — but then our natural tendency is to right ourselves to a more straight position, and to right yourself when you have a curvature, you create a curvature in the cervical region in the opposite direction.”
As with most mobility-related conditions that seating specialists will see, scoliosis can look very different from client to client, even if clients have the same or similar primary diagnoses.
“You can have a man and a woman with similar tonal issues,” Doherty says as an example. “They’re both probably going to develop a curvature over time, although they may also be impacted by the
treatment that’s being followed, by the doctor or the therapist. So one person might have more severe scoliosis than another because maybe it’s not being addressed as well.”
Regardless of what caused the scoliosis, intervention is critical because curvatures of the spine can interfere with so many other bodily systems.
“A more severe case of scoliosis, where increased curvature, pain and disfigurement result, can cause difficulties walking and breathing,” Petito says. “If you are not properly supported you will likely develop postural deformities. The choice of seating system to support your body shape is absolutely critical in preventing the onset or progression of scoliosis.”
As scoliosis progresses, Doherty notes, it can impact digestion, respiration and circulation, in addition to mobility and the musculoskeletal system.
“Somebody could come in and they’re having trouble with breathing, and maybe they’re prone to chronic bronchitis or something along those lines,” he notes. “The medical team may need to look at whether the scoliosis is impacting their respiratory capacity — is that part of the issue?”
Scoliosis can even raise the risk of skin breakdown for wheelchair users.
“Scoliosis can be a precursor to a pressure ulcer,” Doherty says. “You’ve got a curvature of the spine; that often transfers down into the pelvis position, so a rotational scoliosis may cause problems on one side of the rib cage over the other.”
Scoliosis interventions can range from drugs to orthotics — and as part of the seating evaluation, seating specialists should ask which if any interventions are being used, since they can impact seating equipment choices.
“They could be on a medication to manage tone,” Doherty says. “That’s going to have an impact on the scoliosis. When you’ve got younger kids and teenagers, they may have a TLSO — a thoracic lumbar sacral orthotic or a body jacket, as a lot of folks call it. You have to decide: Are they going to be wearing it in the seating system or not? Because the seating system often has to be adjusted for one or the other. Where I used to work, we would do a quick review of the medical charts and say, ‘Oh, they’re wearing a body jacket. We need to let Mom and Dad know that they need to bring the body jacket.’
“The seating system has to be adjusted with the body jacket or without it. It’s very difficult to fit the seating system correctly for both because that body jacket takes up some space between the laterals and the person. And your approach is very different. Without it, you’re going to be doing more correcting through the lateral trunk supports; with the body jacket, you’re going to be providing more balance than correction, because the body jacket itself is then providing the correction.”
Seating As an Intervention
So when you’re creating a seating system for a patient who has scoliosis, should your strategy be to accommodate it or to try to prevent it from worsening?
“Any time you’re working with someone who has a curvature of the spine, you have to find out what their goals are,” Doherty says. “Often, there’s a give and take in the process, just as there is with any seating & positioning. You can hold them in place to correct the scoliosis to be better aligned, but are they going to be able to tolerate that position? Are they going to be functional in that position? If you’re holding them that securely, are they going to be able to do the things they have to do? Or have you just reduced their function? So there’s a lot of weighing of pros and cons of different approaches.”
Different seating strategies include custom-molded systems that fit the client very closely, to specialized backrests and positioning components that work to accomplish something similar.
“The more intimate you get the seating system with the individual’s body, the better the support is going to be,” Doherty says. “So you’ve got a body jacket: A body jacket is going to be the most intimate fit. Then you’ve got a custom-molded seating system; that’s going to be a good, intimate fit. And then you’ve got using a curved back with laterals on it. You’re certainly going to get support from that, but are you going to get the same level of support as possibly a custom mold or body jacket? No.
“Another piece you have to look at is the amount of force being put on the seating system from the curvature, because pressure ulcers can form from lateral trunk supports that are requiring too much force on the body. And will the hardware hold up? Those are all the sorts of parameters that you have to be looking at.”
Among the newer strategies — at least to American therapists and ATPs — is adjustable seating that can be altered to fit the wheelchair user as he/she loses or gains weight or experiences postural changes (see sidebar).
Best Practices for Working with Scoliosis
As with seemingly all other complex rehab seating & mobility conditions, scoliosis is a situation that will vary from client to client. For instance, when asked if scoliosis typically causes pain, Doherty says, “My experience has shown me it depends on the individual. I’ve had some individuals with pretty significant curves that don’t really seem to have pain, and I’ve had others who’ve had significant curvatures and do have pain on and off. It could be that a nerve is being pinched. It could be any number of things. Orthopaedic changes will happen over time, and that certainly impacts internal organs. So pain is a very real potential aspect.”
So if scoliosis is such an individualized experience, can any best practices be recommended at all?
“Understanding clients’ disease process is the most important advice I can give,” Petito says. “No one has a crystal ball, and we need to be able to understand every client’s functional needs and their goals. The client has to be a part of the team. Always watch and listen to them. Education is also very important. Educate the client about the risks of developing scoliosis, proper posture, and the secondary health risks that can occur with the onset and progression of scoliosis.”
While many seating professionals work mainly with clients who have long-term conditions rather than older clients who are aging into a disability, Petito says it’s important to educate both populations.
“In general, the majority of scoliosis diagnosis is congenital or neuromuscular,” she says. “There are, of course, many individuals within our aging population who do not have a congenital or neuromuscular disease that develop scoliosis due to poor posture over time. Oftentimes, because of the way elderly people are sitting in their wheelchairs or their recliners throughout their aging years, they develop muscle imbalance and weakness, and inevitably their posture declines. One solution to prevent the progression of scoliosis is to ensure every wheelchair user and our aging population have proper support for correct posture that will prevent scoliosis.”
Doherty recommends starting by finding out the client’s functional goals, and then working from there.
“Truly the best practice is to address the scoliosis up front and decrease the progression as much as possible,” he says. “You have to look at function, you have to look at every aspect of that person’s life. With diagnoses that are affected by tone, certainly scoliosis is a very big factor that we have to keep our eyes on. But with any kind of weakness, it can rear its ugly head. If somebody’s developed a curvature over time and you don’t address it, it’s probably going to get worse. There’s a lot of complications that can come from not addressing a curvature of the spine adequately.”