Compliance in Pediatric O&P Care

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By Maria St. Louis-Sanchez

Getting patients to comply with treatment recommendations is always a challenge for O&P clinicians, but when those patients are energetic kids who have a cadre of caregivers with their own opinions, the task is even tougher.

"Some of the benefits are thatyou are working with kids, which is great and fun and cute and smiley," says Eric Shoemaker, MS, CPO, regional director at Ability Prosthetics and Orthotics, headquartered in Exton, Pennsylvania. "The disadvantage is that you are working with kids, who can be ornery or crying. So you have the good with the bad."

Giving pediatric patients the best possible care can't be done by O&P practitioners alone, the experts say. The best outcomes are only possible if the patients and their caregivers are compliant with the treatment and follow instructions.

"Compliance is paramount to good outcomes," Shoemaker says. "I can provide the most appropriate device, the most well-fitting device, but if the patient doesn't use it as instructed, it impacts the outcomes negatively. It's beyond our control once they leave our office."

So how do clinicians help their youngest patients stay compliant? The experts say that they've learned through experience not to assume their patients will always follow instructions. Instead, clinicians should take deliberate actions to help improve the chances that their patients, and the caregivers, will be compliant.

The Joys and Challenges of Working With Kids

Maintaining compliance is especially challenging in pediatrics. These patients are constantly changing in size, intellectual ability, and even their interests and what they want from a device.

"A child that last year was a skateboarder, is now playing soccer, or maybe last year they were walking and now are running," says Don Cummings, CP/L, director of the Prosthetic department at Texas Scottish Rite Hospital for Children, Dallas. "Nearly all of them do something with high activity and it's fun to fit someone who is high activity."

Working with children can be more rewarding in some ways than working with adults, the experts says. With orthotics, some conditions can be fixed completely in children if treated early enough, says Ellie Boomer, CPO/L, FAAOP, clinical education manager at Comprehensive Prosthetics and Orthotics, Peoria, Illinois. With adults, she can accommodate their problems and improve their quality of life, but chances are that they will always be coping with their condition. That's not necessarily true with kids, she says.

"If you have a two-year-old with hypotonia, you can put them in SMOs [supramalleolar orthoses], and over time they won't have the same issues," Boomer says. "You can put them in something and fix the problem. I feel like they are the only patients I can potentially fix because their bones are still growing and malleable. I love that it's making an impact for the rest of their lives."

That said, those fixes can only be made if patients wear their devices as prescribed.

"Compliance is everything," Boomer says. "We can make the best device in the world, but if it isn't used, it doesn't have any value."

Not only that, but being non-compliant can lead to worsening conditions, says Anisah N. Mirza, MBA, CPO, instructor of O&P in the Physical Medicine and Rehabilitation department at Northwestern University in Chicago and practitioner at Shriners Hospitals for Children – Chicago.

"Compliance is essential for orthotic and prosthetic treatment to be effective," she says. "Depending on the issues and goals being addressed, the consequences of being non-compliant can range from mild to very severe. For example, a child that doesn't want to wear foot orthoses may experience aches in his arches, whereas a child who refuses to wear a scoliosis TLSO may need to have corrective surgery if their curve progresses."

Finding the Right Device

Many times, good compliance in pediatrics starts with finding the device that a patient will wear and is comfortable in. That means clinicians should constantly check that their ever-growing pediatric patients fit correctly into their devices and they, or their parents, know exactly how to use them, the experts say.

Getting the right fit can be tough in pediatrics, especially when patients can't always verbalize what the problem is.

When a child puts on device, he or she might start crying initially.

Clinicians have to do their best to figure out what that reason might be and decide whether to proceed or look for another solution.

"I've heard people describe working with pediatrics almost like being a veterinarian and working with animals," Shoemaker says. "In both cases, depending on the child's age, they can't give you verbal feedback. If you have a child who is not speaking yet, you have to wonder, ‘Are they crying because they are hungry, do they have a wet diaper, or is their brace uncomfortable?'"

In those cases, Shoemaker says he wants to watch the child more closely and give time in the office to assess if the issue is the brace or something else.

Cummings says another challenge is ensuring that his short, quick, child patients have the right alignment on their lower-limb devices.

"When I watch an adult walk, it seems like they are in slow motion and I can see all of the deviations because they are taking longer, bigger steps," he says. "A child pops on a device and it's ‘bang, bang, bang' down the hallway. Some clinicians struggle at first with seeing gait deviations with children because it's on a smaller scale, and they are generally way faster."

He says he often will take a video of a child walking so he can play it back in slow motion and see the potential gait problems.

Another difficulty in getting the right device for children is finding one that they, or their family members, can use easily.

"A basic principle with kids is that you start with the simplest solution possible, and as the child grows and understands the issues, then you can get more complex," Cummings says. "The more complicated you get for the child and the family, the more prone you are to have problems."

Kids also have a hard time keeping track of things like shoes and socks, he says, so it's unrealistic at first to expect them to keep up with a prosthesis that has several parts for them to potentially misplace.

"All of the excuses that I used to give for my lost homework I've heard kids apply to removable parts of their protheses," he says. "They come home at the end of the school day and throw socks on one side of the room and their devices on the other and they're on to the next thing. The parents play a key role in helping their child develop strategies to apply, remove, and care for their prosthesis and residual limb properly over time. Part of our job is to help them realize how important that is to their success with the prosthesis."

If the patient's family seems overwhelmed or very busy, it's probably best to give them the device that is simplest to use and will still treat the problem, Shoemaker says.

"Over time, you learn to gauge people and families and learn that certain types of devices and certain types of families go well together. Even if you think you have the perfect thing, if they can't put it on, then it won't work for them."

Finding a device that is more likely to be used can mean compromising from what a clinician feels is the best device, Boomer says.

"You may think this is the ideal orthosis, but talking to the family, you realize they won't use it," she says. "Sometimes it's worthwhile to think about what they will actually utilize and maybe provide something that is a little less than ideal…because some support is better than nothing."

Focus on Parent and Patient Buy-in and Education

One key challenge to compliance is convincing kids, and their parents, that they need to use their devices in the first place, the experts say.

"Most adults have developed the ability to understand the benefit (either short term or long term) to wearing their orthosis," Mirza says. "Many times, kids struggle with understanding why they need to wear something that is visually different from their peers, especially if they can function without the orthosis. Long-term goals such as preventing deformity progression, preventing pain, or decreasing fall risks, for example, are something many children struggle to recognize."

In cases when kids don't want to wear their devices, it's even more important for the parents to guide their children, which doesn't always happen, Shoemaker says.

"What I see more and more often is that the kids are in charge and not their parents," he says. "That makes it difficult because it's a child who decides whether to wear their brace and not the parents instructing the child."

For younger children, parents might find it tough as a fussy child gets used to the new device.

"One bit of advice I always give parents or guardians of small children is to never take their orthoses off when they are crying, if possible. Try to calm them down first," Mirza says. "Otherwise they learn very quickly that if they cry, the orthoses come off. It's then very difficult to wean them back in."

To help ensure buy-in from parents, Boomer says she spends more time educating the parents about the importance of the device and compliance. She's learned through the years that front-loading this information helps in the long-term outcomes. Even though she's become more efficient at evaluating, casting, and fitting through the years, her appointments still take as long as they did when she first started out because of the additional time spent on education.

"I've found that my evaluation, fitting, and lab times are quicker," Boomer says. "But the time I used to spend with my hands on the orthosis have shifted to longer time with the families. The net results are less adjustments and follow-ups because I'm spending more time educating."

Shoemaker says he tries to explain to parents and patients why it's important that they stay compliant.

"Education is paramount," he says. "They need to understand what we are doing and why we are doing it. I want them to understand how they can help and what happens if they are not compliant."

Part of getting that buy-in from parents and patients is helping remove any potential obstacles before they become pitfalls, Boomer says.

For example, when she first started, she never thought to ask parents if family members wore shoes in the home. The SMOs she provided needed shoes, and if the children didn't wear shoes at home, it meant they weren't wearing their devices enough to be effective.

If this is an issue, she'll make sure the child has a cheap but effective pair of indoor shoes, or perhaps attach a non-skid sole to the orthosis so he or she can walk on it. She'll even make sure they have the appropriate socks before they leave.

"When the patient leaves the office, they have everything they need to use the device," she says. "As a young orthotist, I'd send them out with a brace and no shoes or socks, and they never came back, and they didn't use what I gave them…. Now I spend a heck of a lot more time on the front end asking those baseline questions to find any potential pitfalls."

If she fears a patient will be non-compliant, she works with them to come up with a plan. For example, she'll work with teenagers required to wear a scoliosis brace to help them figure out how to get the hours they need in the brace but still have free time for activities.

"If you leave it up to the child or the family to troubleshoot, it's more hit or miss if they figure it out," she says.

A shared plan is important for all of the patient's caregivers, not just the ones who are at the appointment with the clinician.

In today's world, it's not uncommon at all to have a child with multiple caregivers—either daycare workers, other family members, or even divorced parents who all have to have information about compliance. Most of the time, only a few of the caregivers are actually at the appointment.

"It is difficult for working parents/guardians to always be the one to take off work and bring the child in," Mirza says. "It's so important to communicate consistent information to all caregivers."

To help, she gives out enough copies of written instructions and her business cards for all of the caregivers so any of them can contact her. She also lets parents record videos of her donning and doffing the device so they can share with other caregivers.

"It's a good way to keep the information consistent," she says.

Cummings says he's always on the lookout for good information that will give a consistent message to all caregivers. His office has developed some videos and also scouts out good ones online.

"A lot of manufacturers have good information with their components," he says. "You have to think of that full circle of the people who will help the child with the prosthesis throughout the day. Sometimes the parents are great and will educate others, other times those people need some additional information."

Boomer says she also gives out her card along with instructions for additional caregivers.

"If the daycare providers have any concerns with the device, they should call me directly," she says. "I feel I'm better to help triage that than the parents."

The Importance of Continual Follow-ups

Follow-ups are always important for O&P patients, but the experts say they are absolutely necessary for pediatric patients who are constantly growing and changing.

Another challenge is that kids might not speak up when there is a problem. Some might be so interested in playing that they ignore a red spot that can eventually evolve into an open sore.

"Their skin is a lot more tolerant and heals fast, and generally they tolerate things an adult wouldn't," Cummings says. "Sometimes they will come back to the clinic and say everything is fine, but it's still important to take a look…. If you design something that causes friction or callousing, they may tolerate it now but that will still be a problem when they are an adult. It's our job to evaluate and correct whether they are complaining now."

To help keep an eye out for changes, there needs to be continual follow-up care, the experts say. In between appointments, other caregivers should also be on the lookout. O&P clinicians should be working with their patients' physical therapists to make sure that everything is going well. Parents are always one of the first lines of defense to help keep a small problem from turning into a large one.

"My biggest challenge is not catching a problem with an eight-year-old boy," Boomer says. "They tend to be very tough, they don't complain, and they can put on and take off their device by themselves. For those patients, it's important for the parents to be involved. I will ask them to pick one day a week at a minimum to make sure they are keeping an eye and making sure there is no callous development or any other visible skin irritation."

To help ensure communication in between appointments, Boomer says she gives out her mobile phone number. She was initially worried that parents would abuse that and call her for trivial matters, but that hasn't been the case.

"Parents are really sensitive and don't want to bother you at home," she says. "The hardest part is convincing them to use it when they need it."

A quick conversation will help her assess if the patient can wait for the next appointment or if he or she needs to come in right away.

"We have a wonderful front office team, but they are not caregivers," she says. "They might not know that it's a problem that can't wait."

This kind of communication builds trust, Boomer says. From that trust, she says, better compliance usually follows.

Maria St. Louis-Sanchez can be contacted at msantaray@yahoo.com.