As O&P shifted from the trade of building devices to a well-educated medical profession, some practitioners say there still isn’t a map of patient recovery and rehabilitation after an amputation.
“In my opinion, we’ve gotten ourselves so well educated, and we can speak the medical language and talk to doctors and therapists, but we still don’t really understand what the timeline is for rehabilitation in our profession,” says Karl Lindborg, CPO, LP, who has worked in O&P for more than 40 years and is an upper-limb consultant specializing in catastrophic care rehabilitation. “As crude as this is, we’ve always been device makers, but now we have master’s degrees and PhDs, and we still make devices.”
Understanding what the timeline should look like is a challenge for everyone, he concedes.
Rehabilitation for a patient with a transfemoral amputation can take twice as long as with a transtibial amputation. Patients with upper-limb devices don’t have to relearn how to walk, but they have their own set of concerns that make acceptance and use of a prosthesis more challenging.
We asked four experts about their patient rehabilitation timelines, and we got the same answer: There is no one timeline. Patient recoveries are so varied and depend on so many factors that it would be ineffective and bad medicine to assign the same timeline to individual journeys. Instead, they outlined a path to recovery that each patient takes, no matter how long it takes them.
Setting Goals
The first step in rehabilitation care is to establish a rapport and set goals with the people she works with, says Debra Latour, OTD, MEd, OTR/L, who works as an occupational therapist and consultant specializing in upper-limb devices.
“This is the most essential step,” says Latour. “The first thing is to get to know the person and understand what their goals are in life, what their roles, responsibilities, and requirements are, and what they would like to do.”
This step can be tricky, she says. People might want technology that either won’t work for their situation or is unaffordable. They might want devices that may be too heavy for them or beyond their technological capabilities. And all of them want to have the exact same capabilities they had with their natural hands. Helping them to understand what is and isn’t possible and the capabilities of their new devices sets the groundwork for recovery and puts goals into place that are achievable and actionable, she says.
“If they don’t have realistic expectations of what the technology can do and the ways it can enhance their lives, then it’s almost like we’re fighting this uphill battle, and no one is happy,” she says. “I have to make sure the people with whom I work understand what the difference is between what the technology can do and what their natural hand can do.”
Latour was born with congenital limb difference and has used a prosthetic arm for nearly her entire life as she was the youngest person in the United States to receive a prosthetic arm at 14 months old. Even with her advanced capabilities, she knows there are still limitations to her device.
“People often have unrealistic expectations and think the device will fill in a huge gap when, in fact, it can’t,” she says. “I wear a device for 12 to 13 hours a day, and I still would not use it to make a ponytail. It’s easier to use my residual limb than clunk my head.”
Setting those expectations is hard at a time when individuals are on the hunt for the latest and greatest devices, the experts say. Patients often seek out devices without background knowledge of what they truly need.
“Oftentimes, these recovering individuals have so much time on their hands that they go onto social media and the internet and start Googling what device they think they need or want,” Lindborg says.
“They are doing window shopping in a sense, and they don’t understand that it may not be appropriate or, if it’s a new technology, it may not be affordable or reimbursable, or they may not be ready for it yet.”
Sometimes patients need to be gently reminded of their current capabilities, says Jeffrey T. Heckman, DO, medical director of the regional amputation center at the James A Haley Veterans’ Hospital, Florida.
Mental and Social Readiness
Patients need to be ready and willing to participate in their rehabilitation, the experts say, and they are all in different mental spaces as they come to terms with the loss of their limbs. Other factors, such as their incomes, support systems, gender, and race, can impact their outcomes.
“Someone will do well when they have a great support system. If their support system is closed-minded and focused on the notion that ‘this person is disabled’ then it makes it harder for the person who is living it to move on.”
That goes for outside support as well, Latour says.
Building patients’ confidence can go a long way, says Sheila Clemens, PhD, MPT, PT, a research scientist for the Lexington VA Healthcare System and assistant professor of physical therapy at the University of Kentucky.
“Improving their confidence is not something that is done enough in rehabilitation,” she says. “We know people with a high self-efficacy perform better with a prosthetic limb.”
She says that a lack of self-assurance can get in the way of patients living up to their full abilities. “I haven’t encountered patients who have unrealistically high goals, but I have encountered patients who don’t feel confident enough with their prosthesis to get back to the things they enjoy.”
She says that even though studies show confidence helps, experts are still learning the best ways to build it, including researching factors that are known to impact outcomes. For example, patients with transportation issues might not be able to make it to therapy appointments regularly or who aren’t working might have income or confidence constraints that affect their attendance and participation.
“We know that people of color have worse outcomes with a prosthetic limb and that women have worse outcomes than men,” Clemens says. “What we don’t know is why.”
No matter their individual issues, motivation is still key, she says.
“If they are motivated, if they are an advocate for their own care, and if they have good social support networks, that will help with their recovery.”
Physical Readiness
Even if patients feel they are in a mental space for recovery, that doesn’t mean they are physically ready. Their physical readiness can vary a great deal, especially when considering the variety of amputation etiologies.
A patient with a traumatic amputation, for example, will more than likely have other physical issues at play.
“If the trauma was significant enough for an amputation, then it is also likely that a traumatic brain injury or another trauma will need to be taken into account,” says Heckman.
For these patients, there may be several steps as part of recovery before a prosthesis fitting is considered.
It’s important to take into account all aspects of patients’ health prior to fitting, Lindborg says. “They have other injuries that happen in that catastrophic world that affect what they will be able to use prosthetically and orthotically,” he says. “What I’m seeing is that some of our best-laid plans that we think we’re going to provide will fall apart if we don’t understand the full picture.”
Lindborg adds that patients with diabetes were probably declining in their health for years before they had their amputations.
“By the time they lose their limb, they are so deconditioned that what they used to do when they were healthy is probably not going to happen just by fitting a prosthetic leg,” he says.
Pain also plays a role in rehabilitation and will prevent the patient from focusing on anything else.
“It doesn’t matter the cause of the amputation, and I don’t care whether it’s socket fit, phantom pain, or back pain. It will interfere,” Clemens says. She says it’s the job of the healthcare team to get to the bottom of what is causing the pain and help relieve it.
“Trying to problem-solve the source of the pain is really important,” she says.
Whenever possible, though, it is best to help the patient prepare for his or her device ahead of time, Latour says.
“I’m a firm believer in occupational therapy or prosthetic training before the delivery of a prosthesis,” she says. “There are things we can do that will make a beneficial difference with our clients before they even have their device.”
She likes to prepare them for what they might experience ahead of time. If the patient has muscle weakness and the device is heavy, Latour uses progressive weight training so he or she learns to tolerate weight on the residual limb and desensitize his or her limb to tolerate the new socket.
“Why not capture their excitement when they are eager and want to learn and are chomping at the bit,” she says.
Small Victories Toward Large Goals
Overcoming those physical and mental hurdles is a big challenge, says Heckman. That’s why receiving a lower-limb prosthesis at the VA takes three to eight months after surgery. Once the patient is ready, however, he says the following three months after patients receive their prostheses are critical.
“[Prostheses] are essential for learning to walk and getting that prosthetic training,” he says. “After that, it becomes routine follow-up and lifelong care.”
Heckman says his team at the VA focus on patient safety with the prosthesis first, then move on to the goals they had previously established. A patient whose goal is going to church services has to learn several skills to get there: how to transfer from a vehicle, navigate a sidewalk that may be uneven, possibly walking up a couple of stairs, and then, once inside, having the strength to walk down the aisle and into a pew.
All these skills take time, patience, and strength, says Heckman.
“In rehab, we break all of those things down step by step,” he says.
Latour also takes these kinds of small steps in upper-limb rehabilitation. She makes sure each skill she teaches will be relevant to patients’ lives. If they ask why they are learning to stack cones, she explains it’s the same skill as stacking cups in the cupboard.
“I talk to them about why this is relevant to what else they are doing,” she says. She adds that it’s important to individualize the rehabilitation. While patients will all need to learn how to safely use their devices, some will need specific skills that, once learned, can make a big impact on their overall quality of life.
For example, one of her clients wanted to go fishing but had to first learn to use his device to tie his boots in a way that they wouldn’t untie in the water. Another person wanted to celebrate his Bar Mitzvah, but had to first prove to the rabbi that he could tie a tefillin box around his arm with a leather strap, which Latour helped him learn.
“He was able to do it and go through his Bar Mitzvah like his siblings,” she says. “It’s important to be able to help people bridge those important moments.”
Rehabilitation Versus Reimbursement
Even though most prosthetists understand the importance of individualized rehabilitation timelines, those timelines don’t always align with reimbursement, Lindborg says. Some healthcare systems, such as the VA, have teams of experts who work together, and are compensated together, as the patient progresses. Other prosthetic clinics are owned by corporations that have a large enough bottom line to afford to deliver a device and wait to be reimbursed. That’s not the case for stand-alone clinics, Lindborg says. Part of the problem is that prosthetists and orthotists are reimbursed when they deliver the device and the longer it takes to deliver the final device, the longer it will take to be paid for their work. This means they sometimes forecast what capabilities the individual will need after rehabilitation, or they deliver a device that will be needed at some point, but just not yet.
“Because of the way we get paid, if we aren’t efficient about getting something fit right away, we’re losing money,” Lindborg says. “It takes a whole different mindset for us to get out of that rush mode and get into that rehab mode. I think we do it unintentionally, but it’s kind of the business of O&P.”
While the O&P practitioners are reimbursed by the device, the physical and occupational therapists are paid by patient visit. This billing difference can hamper communication with the therapists, who may be scheduled out for entire days and thus hard for practitioners to reach by phone. Also, O&P clinicians are paid the same no matter how much time they spend communicating with other members of the medical team.
“Oftentimes we just pass the baton on to the physical or occupational therapist and say, ‘Do your magic,’” Lindborg says. “I assume that OT knows what I know, and they assume I know what they know, and it couldn’t be further from the truth.”
The billing difference between medical professionals is unfortunate, Latour says, but it’s not insurmountable.
“We have to be creative and find ways to co-treat,” she says. “When we want to do it badly enough, we figure it out.”
Maria St. Louis-Sanchez can be contacted at [email protected].
