Managing Patients’ Fit Expectations, Where Prosthetic Expertise and Coaching Skills Meet

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When it comes to wearing a lower-limb prosthesis, experts say the key to mobility lies in the socket fit. Even if a patient has a device with the most advanced technology, it won't help if he or she can't, or won't, wear it.

"Without the appropriate fit, it's garbage…," says Dennis Haun, CPO, clinical manager of Metro Prosthetics, headquartered in Baltimore.

However, getting that appropriate fit and helping a patient with a lower-limb prosthesis become as mobile as possible often takes more than just the technical skills of a prosthetist. Even the best fit won't do much for patients who have unrealistic expectations. The experts interviewed by The O&P EDGE say that successful prosthetists need to be part coach and part psychologist to help patients manage their fit expectations and to teach them how to communicate effectively to get the best fit possible.

"We can't help those who can't help themselves," Haun says. "At the end of the day, if I don't know about a problem, I can't fix it."

The experts say that mobility for patients with lower-limb amputations is often closely linked to their expectations about what the device will feel like when donned. If patients expect to be in constant pain when wearing their devices, they might not have necessary conversations with their prosthetists about what can be done to help, and they will ultimately be less mobile than they would be if the prosthesis were more comfortable. On the other hand, if patients expect to be 100 percent comfortable all the time, they might lose the motivation to keep trying when they encounter even minor discomfort.

To help manage those expectations, the prosthetists we spoke with suggest these tips:

Give new patients special attention.
Teach patients how to take care of themselves.
Keep an open line of communication with patients.
Inspire patients to stay.

Either way, when a patient loses motivation, his or her progress often halts.

"Nothing will stop a successful outcome more than being discouraged," Haun says.

To help manage their expectations, prosthetists need to know when to push, when to back off, and how to keep their patients constantly motivated as they start the often painful process of learning to walk again.

In the end, the goal is to create expectations with the patient so that he or she knows what to expect, knows what it will take to reach his or her goals, and is able to talk to a prosthetist about any problems along the way.

"My goal is to groom my patients to be good patients," says Zach Harvey, CPO, managing prosthetist at the Denver Bulow Orthotic and Prosthetic Solutions patient care facility.

Give New Patients Special Attention

The experts say that patients with new amputations are always going to be the hardest to fit. Their residual limbs are constantly changing, which can make it difficult to find a lasting fit. Also, since they have never worn a prosthesis before, they don't know how it should feel and whether a fit is truly good or bad.

train tracks intersecting

While it may seem to be a given, it is essential to remember to start with the patient's readiness-both physical and psychological. Harvey says prosthetists should be sure to wait until a patient is physically ready to be fit for a prosthesis. Discussions with the patient's surgeon will help, he says. In the early days of an amputation, there's a lot of swelling, and it's difficult to know exactly what size the socket will be.

"The number one question is whether they are ready," Harvey says. "You don't want to fit them in a socket that they won't fit into…three days [later]. There are a lot of steps leading up to that first fit."

Even when the residual limb may be physically ready for a prosthesis, the patient might need time to adjust, Harvey says. To help with the adjustment, he fits the patient with a liner to wear for a week before the prosthesis to begin to build up tolerance to the hot and sweaty environment.

Byron Backus, CP, clinical specialist for Ottobock, Austin, Texas, says he also tries to arm his new patients with as much information as he can so they know what to expect—such as the amount of work it will take or the soreness they might first encounter—and there are fewer surprises along the way. "You need to be as open as possible and try to give them as much information as you can, knowing that they are getting a lot of information, and a lot of it they will forget, so you have to say it over and over again."

He says he doesn't sugarcoat the work that it will take to become mobile; being up front and honest helps the patient mentally prepare. "You need to let them know that it will be hard work and there will be good days and bad days," he says.

Have Open Communication

The first step to managing fit expectations is getting patients to open up about what their expectations are and to tell their prosthetists about any potential problems. However, this is often easier said than done.

weathered signposts

"I don't think many people like going to the prosthetist; they think of it as going to the dentist," Harvey says. "[T]hey don't want to feel like they are depending on me to always fix them. They want to be in control of their own fit."

This kind of attitude, though, can lead to problems, Harvey says. If patients feel as if they are bothering him, or don't think he will listen to their concerns, they will be less likely to reach out in cases when something really is wrong with their fit. "A lot of times problems can be solved with a simple phone call," Harvey says. "When they don't make the call, though, a small problem can become a big problem just because they didn't want to deal with it."

To help curb that potential problem, he tries to be as open and accessible as possible with his patients. "There has to be a level of trust," Harvey says. "I work hard to establish my credibility and show I care about them. I give them my cell phone [number] and tell them to text and call if it's an emergency. I open myself up to be a good listener and communicator, and they, in turn, are good communicators."

Haun, too, gives his patients his cell phone number and encourages them to call or text him. When they call, he makes it a point to listen actively. "You have to listen to your patients; you don't know more than they do," he says. "They are living it and experiencing it every time, and you can't get jaded. You have to remember that this is the first time they are going through this. You may have heard the exact same story 5,000 times, but you still have to listen and respond to their needs. Once they feel that you are taking the time to listen, it tears down every wall and opens every border."

Get to Know Your Patients

The experts say it also helps when they really get to know their patients and their personalities. Then prosthetists are better able to gauge what kind of help their patients need. For instance, if a patient has a low threshold for pain, he or she might need more encouragement to keep working to build up tolerance for some expected, and livable, amount of discomfort at times.

If, however, a patient tends to push too hard, a prosthetist might need to encourage him or her to scale back to avoid a potential injury. "It's a balancing act of how hard you are pushing someone," Harvey says. "It can be hard to know how hard to push and where exactly to stop."

Sometimes, these conversations have to be detailed so a prosthetist can know if there really is a problem, or if the fit is good and the issue the patient is having is just something to which he or she will have to become accustomed.

For instance, when Backus worked at Shriners Hospitals he often fit children with new prosthetic legs who had long outgrown their old ones. Often, they had gotten so used to having a too short prosthesis that they would complain when he fit them with one for their correct size. In those instances, he said, it wasn't a case of a bad fit.

"It's important to listen and try to understand if what they are talking about really is impacting the way a prosthesis is fitting or if it's just different than the last time," he says. In cases like those, prosthetists have to do what they feel is ultimately best for their patients, and be able to explain their reasoning. "Sometimes you have to use your gut judgment and say, 'this is the way we need to make it,'" Backus says.

That said, if a prosthetist really does know and listen to his or her patients, he or she will be able to distinguish those situations from cases when there really is a problem. Backus says he works to listen closely to his patients and figure out what the problem may be-whether it's a certain pressure point or if it has to do with their anatomy. If he can't fix it, he has to be willing to start again, he says. "You have to know when it's time to say 'this isn't working' and it's time to scrap it and start over again," he says. "Sometimes you have to do that."

Teach Your Patients

Prosthetists can't be with all their patients all the time. One of the best ways to manage expectations is to give patients responsibility by teaching them to take care of themselves and recognize when they need to reach out for help. "Good counseling and good coaching can help, but as the practitioner, you can't do it for them," Backus says. "They have to want to manage that and take care of it themselves."

To help, the experts say they try to train their patients to know when their socket fit isn't quite right. This includes teaching them how to:

Observe their skin and be able to tell when a red mark is from normal pressure or when it might indicate a problem
Take socks with them as part of their daily routine and don or doff them as needed to adjust for the volume of their residual limbs
Know what normal pain associated with their prosthetic fit feels like, so they also know when pain is severe enough to seek help

Haun says he helps train his new patients about fit by telling them to perform a "clay ball" test on themselves. For the test, he has patients roll modeling clay into a small ball and drop it into their sockets. If the ball gets completely flattened, the socket fit is too large and the residual limb is falling into the socket, crushing the ball. In this case, the patient should add a sock. If the ball retains its shape, then the limb isn't having total contact, which means he or she has on too many socks and needs to remove one.

"We really want a thick, hamburger patty-size piece of clay," he says. "You want contact but not too much contact."

In the end, patients who are well trained and can participate in the management of their care tend to stay motivated, Harvey says. "When they take ownership of their care and realize that they have to work, that gives them a purpose to get themselves better and work harder," Harvey says.

Work to Inspire Confidence

Harvey says there are two big errors prosthetists can make: overpromising and underpromising results. When prosthetists overpromise results, patients can become frustrated when they aren't doing as well as they think they should. Underpromising, as a tool to help motivate, isn't a good practice either, he says.

"Someone can say, 'You are never going to walk again,' and then when [the patient receives] a prosthesis it's a big success. I don't like that approach. I think it's detrimental," he says. In those cases, the patient may start with a lot of motivation. But because the patient doesn't know what to reasonably expect, the motivation can die out when he or she doesn't progress to the desired level. Harvey says that instead of making promises, it's important for prosthetists to try to keep the patient constantly motivated by setting reasonable, progressive, and attainable goals. "I think another approach is to inspire confidence," he says. "I think there's a good balance of motivating people with high expectations, but to keep them realistic so they are set up for success. You don't want to overpromise them."

Working to inspire confidence begins as soon as a patient starts using a prosthesis. Often the patient is excited to be standing again but disappointed when he or she feels the initial pain.

"They will comment, 'Oh, this is harder than I thought,'" Harvey says. "That's when you say, 'That's where you have your work cut out for you.'" Haun tells his patients that learning to walk with a prosthesis will be similar to the process they took when they first learned to walk, and they should realistically give themselves a year to get to where they need to be. "I tell them they have been reborn as an amputee, and they need to give themselves time to learn to walk again," he says.

To help inspire them, Harvey assesses their physical abilities and motivation and tries to give them real life success stories of similar patients. "I use a lot of visual aids and keep a lot of pictures on file," he says. "I show them people with similar amputations walking or even possibly running." Overall, he says, it's his job to be a cheerleader for his patients.

"I think the big thing is to have a spirit of optimism," he says. "A lot of…[patients] are devastated by their amputations. Just talking positively and saying 'your life is not over' can go a long way."

Maria St. Louis-Sanchez can be reached at .

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