Understanding the Issues that Can Follow and How Providers Can Be Part of the Solution
As undeniably life changing as spinal cord injury (SCI) can be, advancing medical technology has raised life expectancies to encouraging rates for those patients who survive the initial trauma.
According to the National Spinal Cord Injury Statistical Center in Birmingham, Ala., SCI patients continue to have lower life expectancies than their peers without SCI. Nevertheless, a patient who becomes paraplegic at age 20 is expected to live to age 65; a patient with C5-C8 quadriplegia at age 20 is expected to live to age 60. (Life expectancy for a 20-year-old without SCI is 78 years.)
With an estimated 12,000 new cases of SCI per year in the United States (excluding patients who do not survive the initial trauma) and more than a quarter-million SCI patients in this country total, it’s crucial to understand the ensuing medical risks faced by SCI patients, both immediately after injury and for decades thereafter. And it’s crucial for assistive technology suppliers and providers to identify how they can help SCI patients maximize their independence, health and quality of life.
Continuing & Immediate Challenges
While their life expectancies are encouraging, staying healthy requires constant vigilance by SCI patients, family and caregivers, and rehab providers. The multiple effects of SCI—such as, for instance, loss of sensation—can make it challenging for SCI clients to be continually aware of encroaching dangers.
Lois Brown (MPT, ATP), clinical education manager of Quantum Rehab, listed many medical concerns common to SCI clients:Pressure sores: “Inherent to spinal cord injury,” Brown notes, due to a client’s inability to feel the discomfort that can signal skin breakdown, and the impossibility or difficulty in repositioning independently.
Autonomic Dysreflexia (AD): “For any SCI patient, usually around T6 and above,” Brown says. “Their blood pressure goes to extreme high rates that are life threatening. That can be from having a full bladder, a bladder infection, an infection due to a pressure sore (or) a pressure sore on its own. It can also be brought on by something simple, like kinked catheter tubing, and it can be under their pants to the point where nobody can really find out where it might be.”
Clients with AD, Brown says, can sometimes detect that something isn’t quite right, which is why it’s important that clients are taught about AD dangers: “We need to educate the client, so they can educate any caregiver that’s with them (about) what to do. (Clients) might have some awareness that they’re getting sweaty and the blood pressure’s raising. Anyone interacting with the client would need to look (for) the irritating stimulus. The kink in the catheter might cause a backflow of urine, and that is enough to set off the response that might raise their blood pressure to that extreme level.”
Renal Failure & Urinary Tract Problems: In fact, historically, renal failure has been the leading cause of death for SCI clients, says the National Spinal Cord Injury Statistical Center. “Today, however, significant advances in urologic management have resulted in dramatic shifts in the leading causes of death,” the Center says, adding that pneumonia and pulmonary embolisms are now at the top of the list.
4Spasticity: “A lot of people know they have a bladder infection because their spasticity is heightened,” Brown says. “They know consistently how their spasticity is, how their body responds, and if it seems to be really heightened, sometimes the patient’s the one saying, ‘I think I have a bladder infection, and I need medical care for that.’”
Osteoporosis & Fractures: “Just (from) decreased weight bearing in general, as patients are transferring with transfer boards or Hoyer lifts, and they aren’t really weight bearing very much unless they’re doing a full standing protocol,” Brown says. “They’re going to decrease bone density,
and they’re at risk for more fractures. They might twist their leg as they’re doing a transfer and not know their foot’s caught. I’ve had patients who’ve broken their leg because they didn’t know their foot was caught during the transfer, and their bone density is so poor, they fracture.
“There are patients who want to do standing protocols, whether they want to do it in
a standing wheelchair or they want to do it in a standing frame. They would need to make sure they are tested with a bone-density test to be cleared as to whether they have enough joint integrity or bone integrity to do that.”
Respiratory Compromise: “Especially above T4, they’re going to be more at risk for pulmonary issues, (because they have) less respiratory breathing muscles to be able to have good capacity,” Brown explains. “They should get more regular testing.”
Heterotrophic Ossification (HO): “It’s a lying down of extra bone within the skeletal tissues or skeletal muscle,” says Brown. “There’s bone that forms in the joints and starts to limit their hip and knee range of motion, but it might take 12 to 18 months for that to occur.”
That delay between injury and the onset of HO can cause problems for an RTS who has already spec’d and delivered a wheelchair: “So the patient may get the chair and everything’s going fine, (then at a later time) they might be sliding more out of the chair.
It might be because they don’t have the hip range of motion anymore to sit at that upright angle, with that hip angle. You may see people changing their posture and wonder why that’s happening. They probably need to be re-evaluated.”
Minimizing the risk of HO also requires education and consistent client follow-through: “We want to promote early on how important a range of motion program is to prevent that from occurring. And not just for muscle length, but also for the joints. Once those joints become so tight, they become at risk for needing joint releases and tendon releases, which would require more surgery.”
Deep Vein Thrombosis (DVT): This pulmonary embolism or blood clot condition, often appearing in the legs, can present as “a hot, (swollen) joint, sort of shiny,” Brown says. Due to their inability to feel pain, “It’s not something you could easily detect in a spinal cord patient,” Brown notes, “unless they’re not feeling well, and then (physicians will) probably test for it.”
Cardiovascular Disease: “We need to be promoting not just functional mobility, but they need some other kind of exercise program, if at all possible. An incomplete quad that can still have some upper-body movement or a para is really going to need to use their upper-body for true cardio exercise to prevent that long-term risk.”
Neuropathic Pain: “You obviously have nerves that are not conducting properly,” Brown says. “There might be incomplete spinal cord (injuries) that have some sensory and motor (activity) crossing the nerve, but it’s obviously not a normal transmission. So there tend to be patients who have pain, and we have to deal with that from a medication and a positioning perspective.”
Overcoming Challenges at Home
Newly injured SCI patients are being discharged from rehab much sooner than they would have been years ago, which can cause additional challenges with accessibility. In those instances, an RTS can help by advising clients on accessibility equipment, as well as by helping to determine when it might be wise to call in other rehab colleagues.
“The most important role of that provider is being able to recognize and at least communicate back to the physician, the prescribing therapist, the team,” Brown says. “Maybe (the provider) had to take the chair out for a trial to make sure it’s maneuverable within the home, and maybe they went there and recognized different environmental barriers or different transfer issues that they might not have brought up in a clinic setting.”
While shorter in-patient rehab stays can result in less education being given to the client before discharge, Brown points out that a possible silver lining is that once the SCI client goes home, the RTS may be able to recommend bath safety, ramps/lifts and other accessibility equipment for the actual real-life environment, rather than making generic equipment suggestions while the client is still in the rehab facility.
“On the out-patient level of care, there’s an advantage there, because now they’re home, and they know the environment in which they need to function,” she says. “You’re able to customize their treatment, sometimes, when they’re in that home environment.”
Providing Solutions, Providing Hope
The nature of SCI means many clients continue to regain function long after they’re discharged from in-patient stays. “With the shorter lengths of stay, you’re not getting patients to the maximum independent function at the end of their in-patient discharge,” Brown says. And that requires patience, flexibility and foresight from the suppliers providing the assistive technology.
“You are going to be changing the setup of that chair as they continue to maximize their improvement,” Brown says. As a manual chair user improves and adapts, “That’s going to change moving the wheel forward; then it’s more maneuverable, when at first it’s much further back for stability. So you want to make sure that for power or manual, it’s very adjustable, especially on the first chair.”
Newly injured clients are also adjusting emotionally to their new lives. Typically young (average age of injury in the United States was 39.5 years, as of 2005) and living independently prior to injury, new SCI clients usually have little knowledge of assistive technology and the challenges facing people with disabilities. Perhaps not surprisingly, depression is common in new SCI clients.
To combat that, Brown suggests strong out-patient support that restores independence as much as possible, such as through power chair electronics that can also turn on a TV or control an iPod. A recreational program of wheelchair sports could be of interest to clients who were formerly active athletes. Communications technology that can help clients use personal computers and access the Internet can put them in touch with other SCI clients and can enable them to learn more about assistive technology that can help.
More than anything, Brown says, such support can help newly injured clients to see a brighter future. “Being introduced to things that were part of their life before (injury) is critical, because they’ve already lost a sense of themselves,” she says. “We have to find a way through their programs to bring those patients back into the realm.”