Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole, and we have a panel for you today to highlight the Wheelchair Skills Clinic at the Northwestern Medicine Marianjoy Rehabilitation Hospital. Joining me today, we have Anna Chavez and Barbara Peraino, both are physical therapists at the Northwestern Medicine Wheelchair and Positioning Center at Marianjoy Rehabilitation Hospital. And we have Dr. Mahesh Ramachandran, he's the Chief Medical Officer at Northwestern Medicine Marianjoy Rehabilitation Hospital. Thank you all for joining us today. And Anna, I'd like to start with you. Tell us a little bit about Marianjoy's new wheelchair skills training program.

Anna Chavez: Absolutely. Thanks for having us, Melanie. So, this program is novel to Marianjoy and the program is aiming to prepare wheelchair users and their caregivers as needed for navigating the real world, okay? We want to empower our patients and help them live their lives to the fullest. So, this program has been developed over the course of, I want to say 35 years, is how long Marianjoy's Wheelchair Clinic has been open, and many of our physicians and clinics would attend conferences and study best practice guidelines, and we all recognized there was really an unmet need while we were interacting with our patients on a daily basis. So, we would hear all of these stories about shoulder injuries that really could have been prevented had they received adequate education with proper training.

So, let's just take a minute to think about when patients first trial and receive their wheelchair at Marianjoy, they're in the confines of a very safe space, right? They're in a hospital where the ground is very level. People are always holding the elevators for them. There aren't many obstacles, right? But the reality is, especially here in Illinois, think about the real world, think about those curb cuts, where there's snow mounds kind of as a barrier. There's escalators, steep slopes, a ton of obstacles that can be very tricky as a wheelchair user to really navigate.

So, some of the skills that we're covering in the program, and this is just a very small list, but think about proper propulsion technique, wheelies, curb negotiation, falling. People fall, right? So falling in a wheelchair, being able to get that wheelchair back up while you're seated in the wheelchair, negotiating elements of all kinds. Think about grass, stone, sand, stairs. Our goal is really to bridge the gap between basic wheelchair skills and navigating the world confidently and safely.

Melanie Cole, MS: Thank you so much, Anna. And Dr. Ramachandran, what qualifies Marianjoy therapists, physicians, and specialists to create the new wheelchair program?

Dr. Mahesh Ramachandran: Yeah. And thanks, Melanie, for having us. At Marianjoy, we have therapists or physiatrists or rehab doctors trained in the specialty of physiatry. And our whole purpose of a specialty is to help improve the functional level of each patient that we see. Usually, a patient comes home with a life-altering disease, such as a stroke, spinal cord injury, a brain injury are three of the examples of life-altering diseases that they develop. And obviously, mobility is a major functional decline based on that disease or disability.

So as a physiatrist, as a rehab doc, we are trained specifically in how to improve a patient's function. Similarly, physical therapists go to school and are trained specifically in the area of helping improve functional mobility from a walking and/or wheelchair standpoint. So in that sense, our training and our education are very focused on helping improve a patient's functional mobility.

In addition, specifically to the wheelchair and positioning clinic, the physical therapists have done a course out in Nova Scotia, which specifically trained based on evidence-based medicine, regarding how to improve patient's functional mobility and improve skill set with the wheelchair specifically. In addition to the original training, helps Marianjoy physiatrists and Marianjoy physical therapists to help improve patient's access and mobility in a wheelchair's clinic.

Anna Chavez: We're just really trying to help our patients achieve that independence and confidence navigating all types of wheelchair skills in a manual chair or a power chair when they access their community.

Melanie Cole, MS: Barbara, why don't you jump in here?

Barbara Peraino: Definitely our main goal as an interdisciplinary team, we utilize all areas of expertise to improve someone's independence, as well as their quality of life, while taking a careful look at minimizing overuse injuries and conserving energy.

Melanie Cole, MS: Well, it's certainly a comprehensive training program. And Barb, how does the teaching of wheelchair use on site differ as opposed to a rehab facility without a program like this?

Barbara Peraino: We're not only helping to prescribe the wheelchairs, but we really dedicate ourselves to making sure our patients fully understand the importance and use of their equipment. So, let's say during their inpatient stay, we may start with the more basic, but nonetheless very important fundamental skills. We do teach them how to push their chair, how to complete an effective pressure relief, especially if they're non-ambulatory, or how to mAnnage foot rests and brakes so that they could safely transfer in and out of their chair. That builds the foundation for more advanced training that typically will take place on an outpatient basis, so that when they come back here, we can ask them, "What challenges did you face when you were at home?" And then, we could begin to tackle those challenges.

We are definitely blessed to have an interdisciplinary team approach so that we could collaborate together and treat our patients holistically. So, for instance, I could go to a physiatrist and ask them, "I'm struggling with somebody's tone. I need to safely position them, and they're migrating out of their chair. What could we do for them medically?" Or I can partner with the primary treating therapist and say, "This patient is struggling on this particular wheelchair skill. Let's help devise a program so we could implement and you help them focus on that particular skill amongst other things you're working on." Maybe we need to contact an orthotist and see if we could have them devise a splint so that an individual can better control the joystick on their power chair due to some of their deficits. So, that's definitely an advantage.

We also have strong relationships with our equipment suppliers and manufacturer reps, so that if somebody comes to us and needs an adjustment or a repair on their chair, we could definitely make that happen here in our clinic without having to put in a service call to the company. We also are fortunate enough to have demo equipment available for trials so that patients can see and trial some of the most up-to-date advances in assistive technology.

I've even sent reps home to patients' houses to make sure that the equipment we're considering will work in their home environment. Because here we have ample space, sure it looks great, but what happens when we take that piece of equipment home? So, I would say, yes, it is definitely advantageous to have this specialty service here in which Northwestern Medicine's Marianjoy Hospital fully supports.

Melanie Cole, MS: How cool is this program? And Dr. Ramachandran, you're such a great guest as always. Northwestern Medicine's Marianjoy Hospital is one of only a few healthcare facilities in the Midwest to offer wheelchair and positioning services for both adults and children. Tell us a little bit about the importance and why it's vital to offer wheelchair and positioning services for both children and adults in one place.

Dr. Mahesh Ramachandran: Absolutely. So, being part of Northwestern and Marianjoy, we consider ourselves to be part of a world-class institution. We want to provide the best of care, and that's nationally ranked and provide the continuum care for our patients. To be a world-class institution, we should provide the patients the access to all aspects. And from a rehabilitation standpoint, that's very true in this particular case. Not only do we provide acute rehabilitation services when a patient comes to Marianjoy, and they get that acute two to three-week stay in the rehabilitation hospital, learning about their disease, the disease process and how to recover functionally. But then, as they transition to an outpatient therapy program, they are given continued instruction, continued training for their disease and disability.

The Wheelchair And Positioning Clinic is just one other program that is part of this continuum of care and helps our patients get as functional mobility as possible. there are a lot of unique challenges that these patients have to go through, and the wheelchair positioning clinic really helped our patients with these challenges. So, very proud of this program that has been started. And the expertise that our therapists and physiatrists provide, I think, will really help our patients.

From an adult and ped's standpoint , our pediatric patients have even less opportunity to find adequate resources, not only the patients, but the patient's families. And again, having that clinic here at Marianjoy gives them that resource to help these patients out who have had many challenges in their life. So, it's very important to have both the adult and the ped's wheelchair clinic here have our therapists and docs provide that expertise so the patients and their families can get as much of the service as possible.

Melanie Cole, MS: Barb, who's the program best suited for? Speak about patient selection for this wonderful program.

Barbara Peraino: Well, I would say it's intended for every wheelchair user. When someone opts to participate in the program, a wheelchair skills training test is given day one and we use that information as baseline data to formulate their plan of care, highlighting what really the patient wants to achieve, what they want to get out of this program. So, people who rely on power wheelchairs, manual wheelchairs, scooters and even their caregivers can all benefit from the program. Novice to experienced wheelchair users all face barriers and they experience injuries related to using their chair. So, it's important that we educate them and let them know that they can continue to challenge themselves and attack life's obstacles.

For instance, I had an individual recently come in for a fitting for his second chair. And he popped a wheelie and yet still told me he wanted to participate in our program. Of course, I'm like, "Okay, looks like you're doing pretty good," but he said he was still faced with the challenge of not being able to go up a curve. And he really wanted to get on and off the floor. So after a series of sessions, he did achieve his goal. And even as an experienced user, he improved his test scores by 20%.

Our program offered that safe environment for him. He was able to use our crash pads and we have spotter straps, so he could practice falling safely and then get back up and practice it again. He learned how to tuck and hold his head forward while holding his rims, so the chair wouldn't parachute forward, leaving him on the floor and his chair a mile away, right? He learned about momentum and how he should approach a curb and lean forward at that right moment so he could get up that curb with little effort, really. He was amazed, like he was really using his arms. We're like, no, it's all about that momentum and that forward lean.

he learned at the end of our session about the configuration of his chair, how his rear wheels should be positioned so he was balanced and how he should pay attention to where his front casters were for stability when he was reaching. The program helped break down that barrier that he faces daily so he could be more proficient and really confident with his mobility.

Melanie Cole, MS: Barb, expand for a minute on some of those custom devices. You started to mention a few of them in this last answer here that the center would design to meet that patient's unique wheelchair needs. You talked about a few of them, but give us a few more. This is very cool.

Barbara Peraino: Sure. So a manual wheelchair, our typical wheelchair that we see in the Walgreens or on Amazon has a fixed axle. It's just placed back and the wheels are set further back. It's really meant for temporary use. But as Dr. Ram said, when someone has an altering, life-changing event, such as a stroke or a spinal cord injury, they will have to rely on a wheelchair longer term. So by the wheels being placed further back, it is really going to put a tremendous amount of stress on the shoulders, right?

So, we have what's known as K5 or ultra lightweight wheelchairs, many of them out there. And we can adjust that axle, so it's a little bit forward, better aligned with their shoulders, so they're not reaching further back. We could adjust seat slope. So if someone has very little core stability, we could make that front end a little bit higher and the back lower to kind of pocket them in the chair, so they're stable when they're reaching or stable when they're just sitting, really. There's all sorts of variabilities and configurations of the chair, back heights, you know, types of backs, casters, height of the casters, thickness of the casters, solid tires, air tires, the list goes on. There's so much out there. There are rigid-frame chairs, there are folding chairs, all in that same category. The chair is really customized and tailored to meet the individual's needs.

So, that really is part of the manual wheelchair selection, but we also have power chairs. So, we could do things with programming on power chairs to accommodate for ataxia, or we could incorporate memory seat functions so a patient could tap a switch and obtain an effective position for adequate pressure relief. If someone starts to decline in function and can no longer use their joystick, there are micro-joysticks that minimizes the amount of force needed by 96%. If that's not an option, there's also alternative drive controls where someone could operate their power chair with switches, eye gaze, sip and puffs, foot controls. Really, the options are limitless, and that's what the biggest takeaway is. We have such a great resource here, and we partner with a great team to meet the needs of our patients.

Melanie Cole, MS: Thank you so much, Barb. That is really such an amazing program. And Anna, I'd love to give you the last word because really what you all do is about improving the quality of life for these patients.

I'd like you to wrap it up. for us with the skills that these patients gain. But while you're telling us that, I'd like you to speak about patient satisfaction and what you've seen, how has this changed patients lives as you're teaching them these important life skills.

Anna Chavez: Oh, absolutely, Melanie. And I love how you say it's about their quality of life, because it really is about them, right? We're tailoring every single interaction based on their lifestyle, their living situation, and their specific needs. For example, think of someone that lives in Chicago downtown. They may encounter again snow mounds on curb cuts while having to cross the street before the light changes, or think about the potholes and the cracks on our sidewalks.

Our program really aims to problem solve real life scenarios similar to these and Barb spoke a ton earlier to examples that she saw with her client being able to get off the floor. We have seen people being able to successfully complete a transfer without falling out of his chair because his tone would throw his legs underneath the mat and he just didn't know what to do. So, it was great to see how confident he felt after completing the wheelchair skills training.

And I think that our community strives to be as accessible as possible. But the reality is, every single day, these users face challenges that you and I just don't recognize. And Barb and I, we went to the International Seating Symposium Conference in Pittsburgh this year, and we had the opportunity to face many of the challenges while seated in a wheelchair that our patients experience every single day. And with the instruction of experienced wheelchair users, we were crossing the busy streets of Pittsburgh and we entered a conference center and, believe it or not, there was a long line going around the corner for the elevators, and there were escalators. And the security guard looked at us and said, "You guys can wait for the elevators." And he did not realize that we had just completed a blocked practice session with the guidance of our instructors on how to safely navigate the escalators. So, we all, in our wheelchairs, confidently went up those escalators. And, you know, I just will never forget the look on that security guard's face as he was amazed as we all transcended those escalators efficiently and confidently in our rigid-frame wheelchairs.

It's really these skills that we're incorporating into our program, And I just want to make sure that all of our patients have that similar confidence as they're completing their training sessions, because each user's life is different, their medical need is different, their lives vary so much, and we recognize that the most important takeaway is that the patient feels ready to return home and function independently with a sense of empowerment while tackling any barrier that exists in the community. Because the reality is, if they don't conquer these barriers, it's going to lead to decreased socialization and sedentary lifestyles, which could really negatively impact their mental and physical health. And I think we can all agree that we want to combat these ailments effectively without jeopardizing their well-being. Because like you said, Melanie, our ultimate goal is to help our patients with achieving independence with self-care, helping improve their quality of life, and minimizing their caregiver reliance. We want to reduce the adverse effects of injuries and positively influence their mental health, build their confidence and empower them to really navigate their worlds.

Melanie Cole, MS: What a wonderful program. And I can hear the passion for your patients in all of your voices. And thank you so much for all the great work that you're doing and for joining us on this episode today. To refer your patient or for more information, you can always visit our website at breakthroughsforphysicians.nm.org to get connected with one of our providers.

That wraps up this episode of Better Edge, a Northwestern Medicine podcast for physicians. Please always remember to subscribe, rate and review this podcast and all the other Northwestern Medicine podcasts. I'm Melanie Cole. Thanks so much for joining us today.