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Cancer Rehabilitation Medicine & Pediatric Rehabil ...
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Hi, everyone. Thank you so much for joining us today for the second lecture for pediatric cancer rehabilitation. This one, we will discuss multidisciplinary case studies in pediatric cancer rehabilitation. The presenters will be myself as well as Dr. Haas and Dr. Cao. I also wanted to bring up that there were other author contributors that helped with my presentation that I'll be discussing today, Dr. Henke, Dr. Javed, Dr. Srinivasan, and Dr. Williams. The case studies that we'll discuss today will be one from Cincinnati Children's with Dr. Haas, another with Seattle Children's with Dr. Cao, and then another with myself. I'll be presenting on this particular topic. And then again, we discussed that I had a lot of assistance with author contributors with Dr. Dr. Hi, everyone. Thank you so much for being patient with us. We were just finishing up our last session. First up, we have Dr. Haas. All right, thanks so much, Dr. Traviano. So I am Matt Haas, I'm one of the new faculty at Northwestern University. I just recently completed my fellowship in pediatric rehab medicine at Cincinnati Children's. And I'm going to talk a little bit about a case from that institution and kind of a little bit of the kind of complexity involved with this patient. So I'm going to jump straight into kind of initial clinical presentation. So we have a 22-year-old Caucasian male with a history of obesity who has several months of kind of progressive, nonspecific, but progressive symptoms, including dizziness, fatigue, and weakness. Given these kind of broad symptoms, he had a little bit of a kind of a broad workup, but that was notable for leukocytosis with marked lymphocytosis, as well as neutropenia. And then he had a bone marrow biopsy that showed greater than 25% lymphoblasts. So if anyone wants to kind of in the chat, kind of put in guesses of what they think the diagnosis might be, keeping in mind, this is a pediatric cancer case. I'm not seeing anyone come through, but ALL from Vera, any other thoughts? Anyone disagree with Vera lymphoma? Yep, so we have a differential. All right. Well, I think that's at least a decent differential. I will spoil it right now when covering the session objectives. For me, I want to review ALL, so it was a diagnosis of ALL, but review overall ALL survivorship trends, look specifically at regimens that are appropriate for AYA population for ALL, then jumping back into the case, correlate the treatment effects based on the regimen that the patient ended up receiving, and then discuss some of the barriers to his overall rehabilitation for the gentleman. So ALL, we know, is extremely common in children, so ages 0 to 14 years. ALL is the most frequently occurring cancer type and accounts for approximately 30% of childhood cancer in this age group, so before age 15. The overall incidence in this age group is about 40 per 1 million, and although the incidence is less than half of that in the 15 to 19 years, so about 17 per 1 million, it still represents a pretty sizable portion of the adolescent cancer population. And so treatment for ALL, pediatric ALL, is often viewed as a success story of modern medicine due to sustained improvements in survivorship, as shown in this graph. There's been coordinated efforts for treatment regimens in large part to the Children's Oncology Group to standardize care for patients across hospitals nationwide, and although younger patients with ALL have had continuous improvements in overall survivorship since the 1970s, as shown in this data that's from 2009, patients aged 20 to 29 didn't show improvement since 1989. This chart shows that their overall five-year survival for patients 20 to 29 years is approximately 44%, and that's in comparison to 78% for those 15 to 19 years old, and this has led some to consider 20 years to be the mark, what they call their survival cliff, with older patients facing worse prognosis overall. Looking a little bit more into older populations, this trend is kind of further emphasized. This graph is pulled this past week from SEER database that looks at five-year survival by age over the course of the last 20 years, and so there's two important trends here, that overall across all age groups there's been an improvement in five-year survival over the last two decades. However, the relative survival for the AYA or adolescent young adult population as well as older adults lags horribly behind pediatric populations. So with that kind of in mind, I'm going to jump back to a little bit more about this case. So additional workup after the kind of concern for ALL or diagnosis, there was no overt CNS involvement, which thankfully for him there's kind of no evidence of metastatic disease in his CSF, but he did have genetic molecular analysis that demonstrated Philadelphia chromosome like ALL, so it bears talking a little bit more about the kind of overall prognosis associated with that. The reason why is also that Philadelphia chromosome like ALL comprises approximately 15% of all B-cell ALLs in children under the years of 19, and then increases in the adolescent and young adult population to about 20 to 27%. There's been multiple studies, including this one from 2017 that was published in Blood, that have identified poor outcomes for patients with Philadelphia chromosome like ALL across all age groups, and Philadelphia chromosome like ALL is associated with higher risk of failure during induction, positive measurable residual disease, higher relapse rates as including up to 70% at three years, and then overall survival as shown in this Kaplan-Meier curve. So overall a diagnosis of ALL in an adult is not great, and then specifically a Philadelphia chromosome like ALL is even kind of worse. So if we jump back there, so additionally, you know, separate from the specific genetic abnormalities, there was additional input that the specific genomic features were not amenable to kind of more novel treatments such as tyrosine kinase inhibitors or chimeric antigen receptor T-cells or CAR-T therapy, and so as a result he was treated with a pediatric-inspired regimen, and I know at least one here, Vera, is trained as an oncologist, but the vast majority of us are probably not and will not be oncologists, and so I do feel like it's always just helpful to kind of know what regimens are and to understand what patients are facing, the potential complications, where we as physiatrists can intervene potentially upstream or downstream and kind of talk specifically for patients in the AYA population, kind of what options there kind of are for them. So talking specifically about ALL treatment, hyper-CVAD is kind of the most widely used as a routine practice. It was developed out of MD Anderson. The name CVAD was derived from letters that comprise most of the regimen, including cyclophosphamide, vincristine, doxorubicin or adriamycin, and then dexamethasone, and this is kind of on rotating cycles of A, which is that's the A cycle, and then B is high doses of citerabine as well as methotrexate, and these two cycles go back and forth over the course of eight cycles, averaging about six months, and then after that there's a maintenance phase that's, you know, anywhere from two to two and a half years. Key differences with the pediatric-inspired protocols, which is really the reason why it's called pediatric-inspired, is that it's based off the pediatric regimens with just increased doses. So the pediatric-inspired protocols have higher cumulative doses of non-myelosuppressive chemotherapy, so that's things like vincristine, also specifically asparaginase, and then overall the total steroid exposure is typically lower for the pediatric regimen. In addition to this, there's the delayed intensification that's added to the treatment schema, and then overall there's earlier and more intensive CNS prophylaxis. In addition to the increased intensity of this therapy, it's important to note that the pediatric regimen also offers lower, not zero, but lower cumulative doses of alkylators, such as cyclothalamide. For anthracyclines, the cardiotoxic equivalent dosing is less in the pediatric-inspired dose, and then in addition, there's lower citerabine doses, which together just decreases the likelihood of long-term adverse effects. However, it's important to note with this specific regimen that the asparaginase does have risks for hepatic, pancreatic, and thrombotic complications, all of which are increased in older as well as obese patients, which is oftentimes why the hyper-CVID protocols are still favored in older adults as opposed to the kind of AYA population. And then just, you know, I mentioned before, just to be clear, although we're not oncologists, this chart is really meant to highlight differences between the regimens, not absolute differences in the sense that, you know, there are pretty much across both regimens, the majority of the agents used are going to be the same, but there's some slight differences in terms of the overall dose that the patients are seeing. All right, so knowing that this patient had the pediatric-inspired regimen, I'm going to go through many of his complications. And I, you know, this patient, I will say, was hospitalized for a total of about 420 days. So, you know, a week-by-week or even month-by-month synopsis is going to take quite a bit of time. And so I'm just going to kind of do kind of high-level complications that the patient had, and then definitely feel free, I'll pull up my chat box here so you guys can hear or give input in terms of what you think might have been a contribution in terms of his regimen for that. So the first one that happened was he had hepatic and pancreatic failure. So he ended up requiring, TPN was NPO for a pretty long period of time, and was, you know, unable to have any sort of PO intake. So if you guys want to, I'll keep going, but definitely kind of put your thoughts on what might be contributing to that. Understandably, with kind of being NPO and having pancreatic failure, he had additional complications. One of them was he also had tumor lysis syndrome and ended up with acute renal failure, needed to have CRRT for several weeks, and then eventually stabilized to being on intermittent HD. Additionally with that, so that caused a lot of volume overload, and there was some concern for mild to moderate cardiomyopathy that was definitely exacerbated by his renal failure, but contributed to really poor activity tolerance. Then with some of his CNS prophylaxis, he developed some, mostly he didn't have any white matter changes, but he did have quite a bit of delirium, and there was some concern for, you know, potential methotrexate, leukencephalopathy, but he did end up requiring a trach and a vent for a period of time. And, you know, this just further complicated his overall care needs. As I highlighted in the earlier session just before this, the hospital set up, you know, for this patient, you know, there's dedicated vent units for patients that are not kind of ICU level care that's separate from the oncology floor. So as he came off the vent and, you know, needed additional care, he kind of shuffled around to lots of different units. And additionally had multiple and recurrent infections. You know, part of that was just due to the complexity of his care, the amount of lines he had, the immunosuppressants, the fact that he was, you know, going through all the different hospital units, and lots of handoffs. So, you know, definitely had lots of additional care needs. In addition to that, he developed a horrible, painful peripheral neuropathy, was really not able to tolerate a lot of touch in his extremities for a fair period of time. And that included not being able to tolerate his AFOs and then PREFOs, just due to really poor sensation or kind of dysesthesias. And then on top of it, he had kind of motor neuropathy. So wasn't able to actively dorsiflect or have kind of a lot of grip movements and grip function. And, you know, that was very difficult to manage with the pain. In addition to this, he developed a steroid myopathy. And on top of that, he also somehow wound up with bilateral metatarsal fractures. So we weren't able to do any weight bearing for a long period of time, as well as we weren't able to do even wear PREFOs due to the orthopedic precautions that the orthopedic team gave us. So, you know, I think if we kind of walk back, you know, to the regimen that he had, the hepatic and pancreatic failure was probably in large part due to the asparaginase, which is kind of unique to the pediatric regimen. And as I mentioned with the case scenario, he was kind of obese to begin with. So that was probably what led to that. I think, you know, I'm not an oncologist and I don't kind of fault them for choosing that regimen. I think most likely they were thinking it would have better outcomes overall. And unfortunately, he just had a kind of complication from it. Tumor lysis syndrome, we know is kind of a known complication for leukemias and lymphomas. And the main kind of complication with that is acute renal failure. So obviously it's a known entity and not sure that there's much that could have been done to prevent it. Then cardiomyopathies, we know kind of doxorubicin and anthracyclines in general have risk for cardiomyopathy. I think generally, you know, there's a big push for long-term follow-up with patients who've been exposed to anthracyclines. And in the acute setting, I don't know necessarily that that is the main culprit. I think given his overall complexity and, you know, the high comorbidities that that is probably what tipped him over more so than the anthracycline. Then other things, I think, you know, we were really pretty surprised by his respiratory failure, given that he was doing well overall. I think in large part, it was due to just its overall medical complexity and then made worse again by his CNS prophylaxis. And then the things that we're kind of maybe more familiar with in terms of infections, you know, for patients who are hospitalized, especially those on immunosuppressants, they have, you know, all sorts of opportunistic infections that can crop up. And then other things like neuropathy. So chemotherapy-induced neuropathy, I think also, you know, it's possible he had critical illness, polyneuropathy, again, given the overall complexity. But the other things like the steroid myopathy, you know, he needed to be on steroids for his overall course. And so there wasn't a whole lot that we would have been able to do to kind of manage things. And so then understandably, these are the kind of complications and keep bear in mind that he also needed to continue with his oncologic treatment. And so I think especially those kind of at the top of the list caused significant delays and then just kind of further escalated the overall needs. And so given this list of complications, it's pretty evident that there are lots of consultants and subspecialists involved. So those from kind of GI and hepatology, as well as endocrinology, cardiology with the heart failure subspecialty group, nephrology, including dialysis, nursing, pulmonology, ENT, infectious disease, orthopedic surgery, palliative care, who manages a lot of the kind of chronic non-acute surgery kind of pain in the hospital. And, you know, allied health, physical, occupational, speech therapy, orthotics, they were all involved in this care. And as I mentioned earlier, this patient was admitted for about 400 days. When I met him, he kind of looked like this. So this is on the patio of the transitional care units. So the vent units. And so you can see he's hooked up to a vent. He's got a trach. Can't quite tell in this picture as much, but he's pretty jaundiced overall. At this time, he also had his TPN running and a bunch of other kind of antibiotics and needs. And I'd say overall, while he seems to be in a pretty good mood here, another issue, a complication, which doesn't really show up when you look at his chart and all of his numbers and labs is really just the kind of mental health concerns. And, you know, obviously there's adjustment and depression and that just caused limited participation overall. And I think, you know, even when he was maybe more medically well to tolerate therapy, there were lots of issues with kind of getting him to be motivated and seeing the kind of bigger picture and reasons for participating. So with that kind of backdrop in mind of all those complications, just want to hear from people kind of what issues they kind of foresee or imagine there'd be in terms of barriers for rehab. And that's both in terms of, you know, participating with floor-based therapies as well as kind of transfer to inpatient rehab. And I will say for those who didn't join for the earlier session, you know, Cincinnati Children's has an embedded unit. So it's just kind of one floor down from the oncology floor. It's one floor up from the vent unit. So, you know, all the same consultants can continue to follow. But any ideas on things that would be a barrier to his participation in therapy in general? Yeah, so Vera's mentioning the overall complexity of the patient, multiple providers involved, which I assume means kind of just, you know, lots of cooks in the kitchen overall, and kind of the need for all those teams to come in through and see him and do their assessments, and that kind of eats away at a lot of potential therapy time. And then yeah, ventilator dependence. Oh, and there's Felicia, my med student from last week. Hey, Felicia. Therapy interruptions due to needing to be sent out from the rehab floor. Yeah, so definitely, you know, even though there'd be consultants available to kind of triage things, you know, just needing to kind of be out and transferred for a higher level of care. Definitely. I don't think there's any others, but so additional ones I said was just kind of poor activity tolerance. So given the fact that he, you know, had cardiomyopathy, was on a vent, had poor respiratory status, and then overall kind of mood as well as the pain complaints, really just was not able to tolerate lots of therapy, or kind of willing to tolerate it. In addition, I'll mention, so for dialysis, that's kind of a big barrier, specifically at Cincinnati Children's, in that even for patients who have known dialysis needs, such as Monday, Wednesday, Friday, you know, a set schedule, for those that are admitted to inpatient or acute care, the actual timing of dialysis on those days is not always as set. And so for patients on inpatient rehab, specifically, their therapy schedules are set, and there wasn't as much flexibility about moving dialysis to meet those needs as kind of, if there's a dialysis, you know, bed available, or you know, the machines open, then that's what happens. In addition, a lot of dialysis in the hospital occurs in the patient room. And although the patient rooms in rehab are fairly large, they are not, you know, easily able to accommodate dialysis machines, and that's not a common occurrence. So that was just kind of one additional one. And then, yeah, so as kind of Felicia mentioned, you know, frequent acute medical status changes. So that's not even just from rehab, to, you know, acute care, that's also from the, you know, event unit over to the ICU for high level care from oncology back to the event unit if you needed to be on event. So there's lots, lots of, you know, frequent status changes overall. Additionally, which is kind of potentially the same thing with with Vera's kind of many people, is that, you know, numerous handoffs and transitions of care. So for a patient who's been admitted for over a year, you can understandably realize that there's lots of transitions of care. On top of that, you know, changing units, you know, there's always kind of nuanced things that are missed. And overall, you know, there's just lots, lots of complexity. On top of it, throughout the course, he had about 30 PM&R follow-up consultation visits. And although Cincinnati Children's, both the kind of training program as well as the attending faculty is, you know, it's on the smaller side compared to adult programs. There are lots of people there and they may not be intimately aware of kind of the overall course, the overall big picture plan, what barriers there are. And so this kind of just led to, you know, barriers to kind of getting him exactly what he needed. But, you know, with this many people involved, there's lots of kind of eyes on things. And eventually, you know, we were able to kind of improve things. But unfortunately, he was never actually deemed appropriate for rehab level therapies, mostly due to the complexity, including dialysis. And just overall didn't, you know, wasn't able to be at that point of tolerating three hours of therapy. But he did have kind of overall improvement in his medical complexity and was able to tolerate floor-based acute care therapies. And so I'm happy to just kind of share. So this again was him around day 100. And then I actually was on service on consults the day before he discharged, when I was able to watch him walk about 400 feet out through this unit into the garden to get the same photo. He remembered taking this photo when he was on the vent and super sick and said, I've come so far, and I want to have a photo to kind of show how far I've come. And so he walked along, there was the physical therapist who helped get this photo for me. And again, it's been shared with his consent, but really just kind of shows, you know, even looking at him there, you know, you can see he's got terrible ankle plantar flexion contractures with a huge heel lift. He has had a significant amount of kind of sarcopenia and kind of lean muscle mass loss, but he, you know, progressed so far. And I think, you know, meeting him at different time points, I think it was difficult for us to, you know, appreciate the fact that he was improving little by little. But I really appreciated being able to see this photo and really kind of understand the progress he's made. And I think I'm hopeful and hoping that the team in Cincinnati will be able to kind of give me updates about him overall, because, you know, obviously, as I outlined earlier, his overall kind of prognosis is not great. And I think it's just been really remarkable to kind of see, you know, what he went through and, you know, how much dedication he and his family put into his overall care. So with that, I'll kind of pass it on to the next group. Awesome. Thank you so much. Our next speaker is Dr. Sao. Good morning. Let me share my slides. Okay. All right. Well, thank you so much for having me. My name is Elaine Tao. I'm one of the pediatric physiatrists at Seattle Children's Hospital. Today my case is on a case of osteosarcoma, and we will also touch on palliative rehab. I have no conflicts. So this case is a 13-year-old girl who several months ago presented with a one-month history of right knee pain and swelling, and they were seen in an orthopedics clinic where they thought maybe some rheumatologic issue was happening. So they ordered an MRI, which showed this lesion in the distal femur that also extended out into the soft tissue. So very quickly there was concern for malignancy, and she underwent a biopsy, which showed pathology is consistent with osteosarcoma. And with further workup, she had a chest CT that showed lung metastases, and she was immediately started on chemotherapy. Then three months later in her week 10 restaging, she was found to have bilateral pulmonary nodules and local progression in her femur. And then later in the same month, she was found to have pretty extensive DVT in the right limb, and she also had PE in both of her lungs, and she was placed on anticoagulation. And then later she actually continued to have a lot of discomfort and just progression of her disease, and she underwent a right above the knee amputation. And then several months later, she underwent a left thoracotomy just to get rid of some of the larger mets in her lungs. And then a week after, a month after that, she was found to have further pulmonary recurrence of her cancer, and she was placed on palliative chemotherapy. And this is all before we met her. So before I go further in the case, I wanted to just have a very brief overview of osteosarcoma. In my role at Seattle Children's Hospital, I am the consult director, so I see a lot of kids who are on the inpatient side, and I also have a clinic in neuro-oncology. So most of the kids that I see with cancer have a CNS type of tumor, and so osteosarcoma isn't a typical case in my usual workload. But it is the most common type of pediatric bone cancer. The annual incidence is about 5.6 per million in children less than 15 years of age. And usually you see it in the younger kids who are anywhere from 10 to 20 years of age. In fact, most of those who are affected by osteosarcoma is in that age group, but you also might see it in some of the older adults. Most commonly occurs in the metaphyseal region of the long bone. Most commonly occurs in the distal femur, some of it is in the proximal tibia, and 10% is in the proximal humerus as well. Less commonly does it affect the spine, but when it does, or the axial spine, usually when it does, it usually affects the pelvis, but you can also see in the skull and the jaw. And in terms of metastases, the lung is the most common site where it will metastasize to. About 15 to 20% of people who are diagnosed with osteosarcoma will have overt lung metastases on their initial diagnoses. But I read somewhere that a huge percent of people end up developing lung metastases a few months after their initial diagnoses. And so there's this idea of likely there's some micrometastases that were present that didn't get picked up on initial diagnoses and later became more evident in their disease progress, disease progression. And so how they usually present is they might have pain and the pain is constant, it does worsen with time. You may have swelling along that site and certainly you can have pathologic fractures. You can get an x-ray and on x-ray you might see a lot of periosteal reaction. The picture on the x-ray on the left shows sort of this fluffy cloud appearance that's called like a sunburst pattern. On the right it's pointing to sort of this little triangular-ish part of the bone that is called a Codman triangle. So these are all signs of periosteal reaction that you can see with osteosarcoma on x-rays. You can definitely get an MRI that allows you a better picture of the soft tissue involvement as well and certainly PET scan to see the extent of the disease. Definitely need to biopsy it. And in terms of looking at long metastases, chest x-ray may be able to pick it up but usually the lesion has to be greater than five millimeters, but chest CT is really the best way to pick up long mets. And so this is actually my case patient here. This is a little bit farther down during her disease course, but on chest x-ray you can see sort of those fluffy nodules and these are her long mets and on CT these nodules are definitely a lot more prominent. Treatment consists of chemotherapy, surgery. Back in the old days, amputation was favored but more recently limb salvage procedures are more favored. Radiation is really not a mainstay of the treatment plan because it's just not as effective, but for those who have sort of suspected incomplete resections or they feel like they're really close to the margin or they're on the palliative path, they might add radiation to their treatment regimen. So the five-year survival rate obviously depends on the extent of the disease. If it's localized then your five-year survival rate is about 74 percent, whereas if you have distant metastases then survival goes down to 27 percent. So back to the case. So this girl in August, just a few months ago, presented with altermental status, right hemiparesis and aphasia. And they imaged her brain and they found a huge interparenchymal hemorrhage in the left frontal and parietal lobes. And there was some initial thought of could there be an AVM, but I think the oncologist also suspected there may have been brain metastases that led to this. And to complicate it all, she was also COVID positive. A few weeks before, she had gone to Disney World for her Make-A-Wish activity and they think she contracted COVID there. And so not only was she in the hospital with altermental status, right hemiparesis, aphasia with a large stroke, she was also in our sort of isolation unit for COVID, COVID unit. Rehab was consulted and, you know, on exam briefly she had a very dense right hemiparesis and sensation was absent along her right side. Her right residual limb was quite edematous. Again, that's also the limb that had the horrible DVTs, chronic DVTs. And she had significant word-finding difficulties, but she was able to command follow fairly well. And she has had a longstanding issue of anxiety that only worsened with her word-finding difficulties because she's added to her fear of not being able to address her own wants and needs very well. And it was very frustrating for her. Her prior history prior to her stroke was that she was able to ambulate with her crutches independently. She used her manual wheelchair for longer distances. She was able to climb stairs using her crutches and was pretty independent with her self-care skills. And she was very communicative. And at the time of the rehab consult, she was requiring maximal assistance for bed mobility. She needed moderate assistance to sit to stand. And she definitely had pretty significant expressive and possibly some aspect of receptive aphasia as well. So as we're thinking about looking at her, looking at her exam, knowing her history, thinking about rehab goals, of course, it's important to incorporate family goals. But even before we saw her, I contacted the oncologist just to see where she is in terms of her prognosis. And it was not looking good. They estimated even with her palliative chemotherapy, her prognosis was anywhere from three to six months. And so that obviously changes the way we approached her rehab. And certainly talking with mom, there was a strong preference to maximize her current function and independence. And mom was very realistic in terms of knowing what her prognosis is. And there was a strong preference for the patient to be home out of the hospital. Mom had already talked to somebody about hospice, and she does not want to place her in a facility. And it was very poignant. Home is where family is. And so mom wants the family together. She has an older sister who's also in school. And because of COVID, sister can't visit. And so mom is having to juggle being at bedside with her and taking care of the older sister. So this was a very challenging time for the family, to say the least. There were additional stressors. The home structure is another big one. They live in a split-level home. There's several steps to enter through the front door. There is access to the first floor from the garage. And so that gave me a little bit of hope until it was revealed that even though the first floor can serve as a living space, it was off-limits. And as we asked more about that, her late grandmother had stayed on the first floor. And so for them, it is not a place where they wanted to spend, because it just introduced too many old memories that they did not wish to revisit. And so second floor is where they desired to live. And so that means how do we get her up to the second floor? Mom had already been considering stair lifts. And what we really questioned is, is that a safe option? It might be a safe option now, but as her disease progresses, will that continue to be a safe option when she becomes more dependent, having harder time to breathe, for example, as her disease progressed? There are many other psychosocial stressors. Mom is the sole caregiver. She does have a father who's very loving. Her father has actually been in ICE detention for the past couple of years, and apparently recently lost his case. And so prior to us consulting on her, our social worker did some magic and got ICE to agree to release dad for a couple of hours so they can have a visit. But it was with a lot of restrictions. Dad could only be alone in the room with the patient. Mom could not be at bedside. So I can't imagine what this family has been going through. So lots of stressors. Mom is also unemployed. And so that obviously is another layer of stressor there. How is she going to support herself, let alone her children? Okay. So as we sort of reflect on, as we think about how to approach her rehab with all these layers of stressors and barriers, I kind of think back on what are some of the general goals of cancer rehab that can help guide us in determining what her rehab goals are. And so as we all know, cancer is a very dynamic thing. So is cancer rehab. And there's a DEETS classification that sort of reflects the dynamic nature of of cancer and cancer rehab. And so there's preventative rehab, where the goal is to prevent or delay the symptoms of tumor progression or treatment. And so something like that could be like a selfish exercise program. And so we're trying to prevent deconditioning, you know, as you're going through your cancer treatment. Then there's restorative rehab, where you're assisting the patients to return to their prior functional status, and hopefully trying to minimize as much sort of residual disability as possible. Then you have supportive rehab, where these are patients who have sustained some sort of impairment that's thought to be permanent, and you're trying to maximize their function within the current capacity that they have in the optimal environment. And then there's palliative rehab, and these are for people who have a recurrent or progressive cancer. And the focus really shifts mostly on care and comfort, caregiver education, minimizing the burden of care, and really making sure that they have all the equipment they need to provide safe care with good quality of life. And it's interesting, because when I mentioned palliative rehab, every once in a while I get sort of this puzzled look, because I realized that I think people think of palliative rehab as oxymorons when they really go hand-in-hand palliative care and rehabilitation. And so there's a study done by Yoshioka in 1994, and they basically looked at patients with terminal cancer in hospice, and these were patients who received physical therapy. The majority of them had difficulties with their self-care skills, and they measured their mobility index prior to PT and after PT, and certainly they did better after PT in their mobility. They also sent out questionnaires to families of deceased patients of 169 families, and these families recognized that most of their loved ones who passed away, when they were, you know, dealing with their terminal cancer, the majority of them still had a desire to move, to mobilize, to ambulate, and actually a good, again, a majority percentage of them were satisfied with receiving that sort of rehabilitation even in their terminal stage of cancer. So I think this highlights that rehab can very much still occur even in the palliative stage and can actually enhance their quality of life. And so with palliative rehab, you know, the goals are, one, we want to recognize what the patient's functional needs are, and certainly, you know, try to preserve what their independence, try to enhance what their independence can be at each phase of their disease process and to reduce the burden of care from their caregivers. But, you know, the goals also have to be realistic because we need to incorporate, you know, their disease progression, their current medical status, their cognition, their overall prognosis, where are they going to discharge to, and can everything we want to accomplish, can certain equipment fit in where, you know, they're going to be discharging to. And certainly engaging, active engagement of families and patients in establishing these goals are very important, just so everybody's on the same page and that we're not missing some important goals that the family has. And being flexible, expecting the goals to undergo, you know, revision and adjustment and revisiting these goals all the time. So back to the case. So we recognize that for this girl, there is role in supportive and palliative rehab because there's short-term and long-term goals for her. The short-term goals are we want to maximize her current function. She has a hemiplegia, but, you know, we can still enhance her independence. And a big goal of the family is to get out of the hospital. That's a huge goal. What can we do now to enhance her function? But we really want to go home. And certainly the long-term goals for her are to prepare and train the family to care for her safely as she undergoes disease progression and functional changes. And how do we anticipate some of those needs and prepare the family for those? So we really wanted her to come to inpatient rehab. And a big barrier right before she came was we did not have a site of discharge because home was not a safe place for her to go. And it's not common for us to bring patients to inpatient rehab before we know where they're going, because obviously a lot of inpatient rehab goals entail sort of getting the right equipment and training with a very specific setting in mind. But in her case, her timeline is short, and I think we were relying on faith that our wonderful social workers and community folks are working hard in finding her some sort of placement outside of the hospital. And so relying on that, we brought her to inpatient rehab. And so obviously in addition to a big rehab team that consists of PTOT speech, psychology, therapeutic recreation, education, the oncology folks were following her very closely. Our neurology folks were helping with her seizure prevention, her stroke-related things. She has that right residual limb that remained very sort of edematous. And so our prosthetic folks was very helpful in finding the right socks, shrinker socks for that. Our social worker was hard at work supporting the family and trying to find somewhere for her to go to discharge to. Care coordination helped quite a bit with equipment and appointments. Our palliative care folks had been involved from the beginning prior to her coming to rehab and really sort of continued that ongoing conversation and support between the teams and the family. And the community also played a large role. Ronald McDonald House made an exception for her essentially. So she lives locally, but because she lives close enough to the hospital by strict criteria, she did not meet criteria for housing at Ronald McDonald House because you have to live outside of the 50-mile radius. But they made an exception for her, and that was eventually where she went after the hospitalization. And I recently also found out that Habitat for Humanity is also trying to figure out what they can do for the family to their house that they own right now so that the family can eventually move back to their own house. So by the end of her rehab stay, she was self-propelling her wheelchair with her left leg. She was able to do a sand pivot transfer with conduct guard and minimal assistance. She was able to transfer into her shower. She was fitted with a shower commode chair. She still needed a lot of assistance with bathing. Mom was able to complete a car transfer safely. We did some Hoyer lift transfer training, and she's got an augmented communication device to address her aphasia. And these are my references. So we're still seeing her on the outpatient side, and the work is not done. Unfortunately, I heard that she had a fall at Ronald McDonald House. And so despite all of our sort of preparations, I think things still happen. And so rehab is very much still part of her care team. And yeah, well, hopefully this was a meaningful experience for the family. I know it was for the team as well. Thank you. Hi everyone, thank you for joining me. I'm going to go ahead and talk about our case study here at Children's Health and University of Texas Southwestern. So what I'm going to do today is I'm going to review the case study that highlights a multidisciplinary approach to patient care. I will briefly introduce the role of ICANN Rehab and the goals specific for this patient, and then we're going to talk about just three different aspects of the patient care. So we're going to talk about PSH and particular management specific to this case, and then we're going to talk about disorders of consciousness in general, and then talk about the specific medication management for this case. And third, we're going to talk about palliative care's role in general for cancer rehabilitation and multidisciplinary setting. All right, so let's go ahead and talk about this case. So we have a 17-year-old female. She has a past medical history of ulcerative colitis and a recent diagnosis of EBV and new onset headaches. And just to note, she had a negative MRI brain outpatient two months prior. She presented initially with slowed speech, altered mental status, and right-sided tremors. So GCS was 13 in the ED. MRI brain showed lesions that were concerning for ADEM. And so I listed here some of the areas. Really, you can tell it's just kind of multifocal, really just everywhere. And the treatment in general, what they did was they did steroids and they did Plex for five days. Now, by day three, she was noted to have bloody diarrhea, abdominal pain, and it was noted that she had a significant weight loss over the past two months. And so GI was consulted and was initially concerned for proctitis or colitis. By day seven, she had some improvement of altered mental status and then suddenly had a rapid decline, including a loss of gag reflex, despite Plex and steroids, and she was intubated. And so they did a repeat brain MRI, and most of the lesions were worse, especially in the right parietal lobe. There was no improvement in bloody diarrhea. And so it was at a point where a lot of the teams were thinking that we needed to basically expand our differential. And we were thinking in terms of, is this a lymphoproliferative disease or EVV encephalitis? Not sure. And so further workup and treatment was completed. And so we got CT of abdomen and it showed multiple hepatic and splenic lesions. MRI spine showed multifocal lesions and enlarged lymph nodes. Of course, we got a biopsy for PATH. And then we also had a sigmoidoscopy and it showed a lymphocytic process, deep ulcers of the stomach and sigmoid colon and rectum, and biopsies were obtained. Day nine, PMNR was consulted because at this point she was now having worsening tone, spasticity, and general functional decline. And then oncology was also now on board for a suspected malignant process. It was at this time, also shortly after, that general PMNR service was switched from a general PMNR to an ICANN rehab, cancer oncology, cancer rehabilitation focus. She's no longer intubated, which is good. And it was brought up to place the patient on disorders of consciousness protocol, but family was a little hesitant to do it at this time. Now by day 16, she continues to have bloody stools, multiple blood transfusions, abdominal pain. And so on the same day, she had a exploratory laparotomy found to have a rectal perforation from the sigmoidoscopy, and that was repaired, and then now has a diverting end colostomy. The pathology came back really interesting to be an EBV-driven lymphoid granulomatosis grade two, and ultimately this was found to be due to an NK cell deficiency. By day 21, chemotherapy was now being started. So we had these different, the interferon, and we had a modified DA-EPOC-R protocol, but it was modified because she didn't getting the steroids due to risk of poor healing, status post-multiple surgeries. And fortunately by day 29, an incisional abscess was found. And so she had then on day 35, a subtotal colectomy with an excision of sigmoid colostomy and an ileostomy. And then by day 42, she had a wound dehiscence, now had multiple pelvic wound abscesses, and she status post-IND with wound back placement. And now oncology has modified the chemotherapy treatment to hold cyclophosphamide due to multiple abdominal wounds. And so you can see here, there's this very delicate balance of treatment that will both heal her oncological process, but at the same time is causing a worsening of a lot of her wounds and things like that, status post-surgery. And so because of the need for further collaboration in terms of next steps for treatment, we had our first multidisciplinary care team conference. And culturally for our institution, it was a pretty big deal to have PM&R involved, because PM&R is only sometimes involved culturally. And so I really was thrilled to be involved in this particular process for multidisciplinary care team. And you can see a lot of the disciplines that were already there. And so it was from that meeting that we all basically discussed with the family, the different options in terms of treatment. And in particular, this case was very, I mean, a lot of these cases are emotional. And this one in particular, the two parents were actually veterinarians. And so they understood enough biologically to understand exactly what was occurring. And even more interestingly is the father had actually studied B cells for his dissertation and in his training. And so he very much understood this exact process that she was going through. And because there was concern that chemotherapy would cause further damage, we decided to do whole brain radiation, and that was initiated. And now she had received 11 fractions. We decided to meet up again, day 62, just to kind of chat and see how things were going. And really, there was not a lot of progress. And so by the third multidisciplinary conference, it was at that time that she had not made a lot of gains, certainly functionally, and family had decided to withdraw care, not to re-intubate and to not bring home. And so she did pass away on day 83. And so this case in particular had highlighted the importance of a multidisciplinary team approach to care. And there are varying aspects that we found as a team that we wanted to discuss with everyone. And so first, we're going to talk about how ICANN Rehab or having a cancer rehabilitation service was helpful for this patient. And so we talked about this at the previous lecture, but for those of you that are just tuning in, Integrative Cancer Rehabilitation or ICANN Rehab is a program I created that is a clinical infrastructure to increase rehabilitation presence for children across a continuum of care in order to improve functional outcomes and clinical practices. And so I divided this into four different aspects, outpatient services, inpatient services, conferences, and programs and protocols. And so in particular, the general program goals are improving functional outcomes, improving access to rehabilitation resources and services across the continuum of care, and streamlining that multidisciplinary approach. And so I have this graph here on the right because I wanted to emphasize how important it was to have a multidisciplinary care conference for this patient. I mean, these are all of the team members that were helping care for this patient throughout the duration of their stay. And so when it came to ICANN Rehab, here were the specific goals that ICANN Rehab was beneficial. Having a cancer rehab program was helpful for this patient. So we were able to manage her acquired brain injury, which includes spasticity, dystonia, PSH, and arousal. We were able to provide a lot of support for therapy teams who would see or try to manage a particular aspect of their care and needed to relay that to other teams. We were able to initiate different programs. So ultimately, we were able to do the DOC program for this patient. And then as a side note, there's a program called RISE at Children's Health, which helps provide debriefing services to a lot of the providers and healthcare providers. And so that's something that ultimately at the end of this case, we were able to initiate for a lot of the providers who were very emotionally affected by this case. Again, the biggest thing is we were able to integrate as a multidisciplinary team member, and we were able to help provide education, especially for the families in terms of functional outcomes, especially a little bit later by the second and third conferences. That was something that the families ultimately decided upon based on what we were saying in terms of functional outcomes. We were able to participate, and then we were able to assist in management, which was, again, like I said before, a huge cultural change. We were able to provide some grief support for the family. And then again, we were able to provide realistic functional outcomes for family and team members in terms of what she was able or could be able to do. So we're going to switch gears here, and we're going to talk a little bit about PSH. And so really, this is a clinical syndrome characterized by paroxysmal episodes of dysregulated sympathetic activity, and there's a million names for it. And usually, it's fairly delayed in identification, and it's not very well understood. We know that it's primarily caused by brain injury, most of it being TBI, and some risk factors include DAI, pre-admission hypoxia, younger age at time of injury, male sex, and brain stem injury. In particular, one thing I wanted to hone in on this slide is in pediatrics, 13% prevalence of incidents, 10% after TBI, and actually 31% after cardiac arrest. And so it's a busy slide, and I'll just go over a few of these, but really the big functional outcomes and things we need to think about is pediatric patients with PSH have longer stays or sweeping scores and improved less on scores motor input. We know that there's a higher hospital cost. We know that there's increased morbidity, especially since it's often unrecognized. DAI has higher risk of developing sympathetic storming or PSH. We know that there's a higher disability rating scale score, increased DOC, longer length of stay, and increased mortality. And in children from a rehab setting, there is prolonged rehab, longer duration of coma, and greater frequency of late death. And so kind of basic clinical manifestation includes hypothermia, tachypnea, increased tone, diaphoresis, and tachycardia and hypertension. In general, you can have onset one to two weeks to months. The episode can last seconds to hours, and duration can be days to years. And so briefly talking about treatment and management, this could be its own lecture. Conservatively, the biggest thing is we've got to find the source and treat the cause. And so any sort of noxious stimuli, constipation, urinary retention, et cetera, are things that we need to find the source for and treat that particular source. And then afterwards, we then think, OK, pharmacologically, what are some things that we can help with this patient? And the pearl for me is find medications that can treat multiple symptoms. And so this is one of my favorite slides I use for myself and for teaching medical students and residents and fellows. I really like the way that it kind of delineates medications, mechanism, mode of action, and of course, the particular symptoms that you're treating. And so in this particular case study, let's talk about what we did. And so the patient's symptoms specifically for PSH were characterized by agitation, fever, sweating, and dystonia. We know that she has acquired brain injury, abdominal pain, history of ulcerative colitis, post-surgical pain, pain from chemotherapy side effects, respiratory compromise, and multiple infections. And so while we were already in the process of treating a lot of these known factors, we wanted to go ahead and also treat a lot of her other signs and symptoms. And so for spasticity, we started her initially on baclofen. And then throughout the course of her stay, this is eventually increased to 20 milligrams three times a day. For dystonia pain, we had started her on Neurontin and then steadily increased that throughout her stay. For dystonia, we had arousal and fever. We had started her on bromocriptine, and this is eventually increased to 3.75 milligrams and eventually up to 7.5. And you'll see that in subsequent slides further a little bit later. And then for acute episodes of dystonia, we were able to hold off starting her and having the family in the hospital depend a lot on getting her PR and Valium. But eventually, especially near the end of her course, she had so much brainstem involvement that really, and the multi-focal lesions have gotten much larger that really we were having to still utilize Valium. And so this is the dose, she was eventually at six milligrams Q6 and then IV three milligrams Q6 PRN. And then within the last week or so of her life, we were using propranolol for agitation and tachycardia, which was actually really helpful to make her much more comfortable. Okay, so we talked about PSH, we're now going to talk about disorders of consciousness. And so we are familiar with all these particular phases of DOC. Important concepts just to kind of consider and think about is MCS is reported, reportedly more common than unresponsive wakefulness state. We know that our primary goal is always optimizing arousal and responsiveness. And so we always know we want to wean sedating medicines and we want to prescribe neurostimulants and we want to promote medical stability. We know that if we treat the pain, the hypertonia, the insomnia, the epilepsy, the PSH and agitation, that the brain injury itself can be better functionally. A few of the assessments that we use for DOC, and so coma recovery scale revised, come in your coma scale, and then PAMS. And we know from studies that there are better outcomes for younger age, shorter time post-injury, higher coma recovery scale, revised total score and EEG reactivity to eye opening. And we know these, you know, etiology, clinical diagnosis, DRS, EEG, background activity, and acoustic reactivity are not associated with outcome. Just the one thing I wanted to note from this slide is when you're considering poor prognosis for recovery in these patients, bromocryptine use has a positive risk benefit ratio of a dosage of at least 7.5 milligrams twice daily for four weeks. And I am not going to go over this slide. This is more for your reference. But I think when we're considering neurostimulants, it's really important to consider whether or not a patient has PSH, because a lot of the side effects of some of these medications can look like PSH, like amantadine, when their side effects are tachycardia, hypertension, fever, or methylphenidate, which has similar side effects, and same with caffeine. So just that's something to kind of consider when you're planning for that neurostimulant to add to their program. And so let's go back to our case. And so we had been consulted for time management and rehabilitation needs. We had considered amantadine, and that had been proposed. But family had wanted to hold off at that time. And especially there was kind of this, at that time, it was like, oh, is this ADEM? Is this lymphoperliferin disease? Like what is actually occurring? And so the patient was initially started on bromocriptine, more for dystonia, not really used for arousal. And eventually this was increased. And then actually at one point when her PSH seemed to be a little bit under better control, we had introduced Ritalin as a neurostimulant, but it basically caused increased dysautonomia. And there may have been, you know, there were worsening brain lesions shortly after, but then there may have been on day 43, questionable delay, purposeful movement, but it was unclear. The DOC program was introduced on day 45 and then finally initiated on day 48 after mom and dad were on board for this. And we had modified the bromocriptine regimen to 7 a.m. and noon dosing for neurostimulant purposes. And then we had, again, worsening lesions, the brain radiation started, and then we actually started increasing bromocriptine much, much more until we got to 7.5 milligrams, three times a day. Eventually it was determined that we had just a poor prognosis. And this was discussed at length with the family, given the length of storming and being under the DOC protocol or program or being under DOC with acquired brain injury. And so it was at that point that the family elected to transition to comfort care and sign a limited DNR. And then again, after chatting with palliative care, as I discussed earlier, propranolol was initiated for agitated and tachycardia, which was very helpful, even if that's such a low dose to make her feel much more comfortable. All right, lastly, we're going to talk about the role of palliative care in general in terms of pediatric cancer rehabilitation. And so in this case in particular, what was really good is the mother had actually had experience with palliative care previous to this admission and experience, and that was with her own father. And so the great thing is that palliative care was actually introduced to the family early on by hospital day 22, which was really, really wonderful in terms of coordinating their care and providing communication needs, especially for the mother. The father was a little bit guarded and hesitant at first, but he did eventually come to the table and open up with palliative care. And of course, they were paramount in helping the team and helping with communication between the interdisciplinary care and especially in her final weeks. And so just in general, there is always going to be challenges to introducing palliative care to a team, just depending on the particular patient and the provider's personal bias and or experience with palliative care. I think the classic thing is, oh, they're the doctors that helped you with death. No, they're like, there's so much more than this. And there's so much that they're available and amazing at. And really, it's an incredible experience to have and make sure that palliative care is on board with your cancer rehabilitation patients, especially early. They can help identify communication styles. They can help with coordinating between team members. They can help provide and improve communication even between the families and team members, as well as other team members. And really, having them involved early can help families and providers process information, help come up with treatment options, and establish overall goals and care of plan, especially with decision making. Here are some of our references that we used for our talk today. All right, we'll go ahead and move on to the Q&A, and Dr. Fed will go ahead and take over as a moderator. Awesome. Thank you so much. Let's start. I think the first questions are for you, Dr. Schiaviano, but they can also be answered by Dr. Haas and Dr. Sal. The first one is, what are some valuable lessons you have learned about cancer rehabilitation from your patient in particular and or patient care in general? I feel like there are some small, like there are both smaller aspects that I've gathered from this and just general, and of course, general understanding. So from the specific aspects, what I've learned in particular is there's certain medications that can be very helpful and utilized for patients to improve their therapy participation, which sounds kind of, what's a little bit different is actually medications like Ativan, for instance, some, you know, in a lot of cases, it makes the patient really sleepy, but in some cases, it helps as both being an antiemetic and helping calm down their anxiety. And so for instance, I've actually had, I've been able to schedule or make sure that that particular medication is scheduled before some of their therapies, and they tend to participate a little bit better. That's just kind of like a small aspect of something. And also, Cyprexa is also used as an antiemetic. That was something that I've found kind of interesting, and it's been very useful, especially for patients who have a lot of anxiety. And again, we need to improve that therapy participation. So again, those are like very specific, tailored nuances for learning for cancer rehabilitation. But the greater aspect of it is learning how integral and important communication is between team members, and making sure that you are always available to assist with any communication in between team members. So making sure the therapists are on board for an inpatient rehabilitation stay, or making sure that we get the oncology roadmap, so that way we can determine what therapy is best appropriate, things like that. So that, I feel like, just that communication piece has been the most integral and most important aspect within cancer rehabilitation. Great. Thank you. Dr. Haas or Dr. Sal? Go for it. Well, thank you. So for our case, I think the biggest learning thing is, I think having the whole team sort of be on board and understand the concept of palliative rehab, and more importantly, the spectrum of functional needs that this one patient may have, not just, you know, a month from now, but, you know, three months from now, she will look very different. And so I think it forces people to not think of her rehab plan as a very linear thing, but really anticipating the needs that she'll have as her disease progresses. But I think overall, you know, it really didn't take much for everybody to be on board. So that was nice. Yeah. And then I think, you know, obviously, I think the big takeaway for the case that I was involved with was just kind of like Dr. Chamion said, communication. With that long of a hospitalization and that many providers and that many units, there's a lot that can be missed. And I think also handoffs between, you know, consult service providers and PM&R, making sure that as much as you can convey the kind of nuanced pieces and big picture, kind of what you're working towards, because you just open that patient's chart and you're just bombarded with so many data points that just say, like, this is not a rehab, like it's not a rehab candidate right now, and it's difficult to kind of anticipate how he end up could be. And obviously, in my case, he never ended up being able to be in a position to tolerate inpatient rehab, but that doesn't mean that we don't have a role. And so I think just kind of not being kind of deer in the headlights and kind of paralyzed by the overall complexity, because I think more and more we're seeing lots of complexity. And I think especially in cancer patients in general, they're going to be complex and we need to figure out what's the best way to kind of serve their needs, even if it's not inpatient rehab. Great, thank you, guys. Next question. Do you have any tips to improve therapy participation for your programs? So whether it's speech, OT, PT, neuropsych? I can go first. I kind of touched on that a little bit before, actually, where I think timing is really key in helping bring down the anxiety of a lot of the patients and their families. And so timing can include medications, but timing can also mean the timing of that therapy teams go in, having a set schedule every day, if that's possible, and making sure that that communication is there for the families and for the providers. So that I think is the most important thing, other than what I talked about before, which is general medications. Dr. Sal? Matt, I'll let you go first. Okay, appreciate it. Yeah, I mean, I think, so something that I, so I came in, kind of accepted transition of care for this patient. So I think it's difficult, but I think in general, across multiple patients that I've encountered is just, you know, if ideally PMR is consulted early before there are complications, I think setting expectation that, you know, even on your bad days, that's probably the more important time to do something. Even if it's just getting out of the bed to the chair, sitting up, you know, elevating the head of the bed, you know, brushing your teeth, just some sort of activity, because on your good days, then it means you're going to kind of, your cup's going to be even fuller. And that's obviously very, very difficult. The likelihood of us getting involved very early is difficult. But I think just, you know, every opportunity you have to set that expectation is important because sometimes, you know, families very often listen and they, you know, they're trying to do everything they can to support their child in this process. And, you know, there'll be some who disagree and don't, you know, don't have the kind of understanding of the overall functional benefits and kind of prognostic benefits and really just kind of are like, if my kid's not feeling well, I'm not going to push them. And I think it's important to then, when you hear that kind of, you know, see what's behind it and try to, you know, not necessarily, you know, oppose them or kind of, you know, come back with data, but really kind of partner with them so that you can kind of advance the mutual goal. Yeah, I agree. I think having the same set of expectations for, you know, what it means to participate in therapies and why we're doing it and have buy-in from the family and the patients is probably the biggest sort of initial step, because I find that, you know, if a therapist coming in and they're turning them away, you know, find out why that is. And I think a lot of times you realize that the family just isn't just quite at the same, you know, have the same sort of expectation and set of goals, at least in the moment, compared to, you know, the rest of the team. And so I think having that candid conversation of, you know, this is where we are, these are their potentials. This is why, you know, we're sort of pushing, you know, for this, or not, maybe not pushing for this, but, you know, offering these services, I think having that candid conversation oftentimes is very helpful. And I think also those conversations can also come from the cancer care providers, because, you know, some of the things that I think we as rehab people are dealing with is, you know, for instance, there's some cultural differences in that when you're sick, you're supposed to be in bed. And so how do you incorporate rehab as very much part of their cancer treatment, that this is good, that they need to be out of bed, that they, you know, it is very much a part of their cancer treatment plan. I think to have the oncology team also chiming in on that conversation, I think it just makes it much more productive. Great, thank you. I think the next few questions are sort of similar, so I'll try to summarize. How do you navigate timing of rehab with each patient's multiple medical complexities, communication with other disciplines? You know, do you notice timing with oncologic treatments in regards to participation with therapy and tolerance of therapy? Dr. Shabiana? Yeah, actually, I'm going to answer this similarly to how I answered things before. So it really, it's all about communication, really. Like I know that's not, I can't emphasize that enough and making sure that you are available as a provider. And so that's something that I tried to make sure of when I was building up the program is making sure I was available, TigerText, Epic, a pager, email, and I was getting my cell phone out as well to a lot of the oncologists. So that way, it's just a quick text or a quick phone call saying, hey, we both have a mutual patient. So it's a really good thought process. And especially right before tumor boards. So I can think of a few patients, for instance, where we're pending pathology for, say, a new brain tumor, but like the preliminary results are up and say the tumor board is in a couple of days. Well, I quickly, I'll talk to the oncologist and say, okay, what do you all think for protocol? Where is this patient going to be for the next month or so? And once I get a better understanding of location, then I can say, okay, we're going to go ahead and do a particular plan, like say they're appropriate for inpatient rehab. Great. Are they, you know, in our particular healthcare system, we are unable to provide inpatient rehabilitation services while a patient is doing radiation, for instance. And so if they're getting radiation immediately, then there's going to be a delay. And then you have to figure out, okay, how long is the radiation? Is it even worth setting up home health services? Or do they need to stay inpatient during that time? Is it fiscally worth that? So that's a conversation we have to have with oncology because we've actually had patients where they were medically complex enough that they didn't have to go home during the radiation treatment and they ended up staying there at the hospital. And so then we created a more intense therapy program while they were there, that kind of two-ish hours of therapy, PTOT speech if needed, while they were there to prep them for inpatient rehab after the radiation, if there was a gap of time. That's just, you know, one small example, but really it's so individualized and so dependent on that patient and what is going on medically with them and what that oncology roadmap is, that really navigating that roadmap is just the most important thing. Take it away. No, no, I can go. Yeah, I mean, I literally could you could just hit replay on what Dr. Giaviano said. It really like like I kind of outlined in my case, like I think it's important to understand the regimens and what's coming down the pike, timelines, figuring out, like, do we have this narrow window to capitalize, even if they're not, you know, at their ideal, you know, there's no ideal really in the course of, you know, most patients care for inpatient rehab. But like you got to strike while the iron's hot, figure out what's what's coming. See, you know, knowing what regimens going to be, you know, be given and kind of how they respond to previous regimens, those sorts of things. I think just having open dialogue and talking to the your oncology colleagues about your concerns for participation or medical complexity and just kind of have that dialogue with them just to to kind of figure out, you know, what's the best opportunity and and and kind of where to go. And then in addition to that, then it allows for if they do to go into inpatient rehab, then you already have kind of open dialogue where you can say like, hey, we're noticing after this last round of chemo, they're having additional emesis like we need to manage it, especially for me being now at a standalone hospital where we're affiliated with the same academic institution. But, you know, the oncologist over there don't have access to our patient chart. So just being open and kind of having direct dialogue with the oncologist. And I was going to add, I agree with all that hit replay again. But I was going to add that I think one also has to be just flexible because of all the medical complexities that these patients have. In our last session, we talked about some of our individual programs that are institutions that kind of brought the intensive therapies to them on the acute care unit. And so, you know, recognizing that these people have medical complexity and they have active medical issues. Yet at the same time, they have these functional goals that that you can very much begin to work with when they're still on the acute care unit. And how do we bring that intensive therapies to them? And so I think coming up with sort of more creative sort of nontraditional ways of providing that care, you know, I think in our individual institutions, we've found some success there. Great. Thank you all. I don't see any other questions in the chat or the Q&A box, but if anyone has any other questions in the last few minutes, otherwise we'll start wrapping up. And I think I can speak for all of us here. Each of those cases was not only interesting, but so different in its own right. So thank you each for presenting these interesting cases. Awesome. Thank you guys so much for showing up and for taking in some of what we have all created together. And, you know, I hope this has all inspired you guys to go out and build your own programs. You can do it. Please reach out to us if you guys have any other questions. We love to network and collaborate. And, you know, we, I mean, pediatric oncology and peds rehab medicine is just, it is such a need here in our nation and for our patients. And so just, you know, making sure that we get the word out about such an important topic is really crucial. So thank you guys so much for coming out today.
Video Summary
The first summary discusses two different case studies in pediatric cancer rehabilitation. The first case study involves a 22-year-old male with obesity who was diagnosed with acute lymphoblastic leukemia. Despite facing complications like hepatic and pancreatic failure, tumor lysis syndrome, acute renal failure, and peripheral neuropathy, the patient showed improvement over time. The second case study involves a 13-year-old female with osteosarcoma who underwent chemotherapy, surgery, and radiation. The case explores the challenges faced by the patient and her family, including the impact of the COVID-19 pandemic. The importance of palliative rehabilitation in improving the quality of life for terminal cancer patients is highlighted. The overall message is the complexity of pediatric cancer rehabilitation and the significance of a multidisciplinary approach to deliver comprehensive care to patients.<br /><br />The second summary specifically focuses on the case study of a 17-year-old female with multiple medical complexities. It emphasizes the importance of a multidisciplinary approach to patient care in the context of cancer rehabilitation. The video highlights the challenges encountered in finding a site of discharge and the involvement of different medical experts. The patient's functional progress is described, including abilities like self-propelling a wheelchair, transferring into a shower, and using an augmented communication device. The ongoing nature of the patient's care and the need for rehabilitation and support are emphasized. Communication and collaboration between different disciplines, as well as the role of palliative care, are discussed. The ultimate goal of the patient's care was to improve her quality of life and manage her medical complexities. The case study underscores the complexity of pediatric cancer rehabilitation and the necessity of a holistic, multidisciplinary approach to care.
Keywords
pediatric cancer rehabilitation
case studies
acute lymphoblastic leukemia
obesity
complications
chemotherapy
osteosarcoma
COVID-19 pandemic
palliative rehabilitation
quality of life
multidisciplinary approach
medical complexities
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