On this episode of the Healthy, Wealthy and Smart Podcast, I welcome Nicole Stout on the show to discuss cancer rehabilitation and survivorship care. Dr. Nicole L. Stout is a renowned health care researcher, consultant, educator, and advocate. She is research assistant professor in the School of Medicine, Department of Hematology/Oncology at West Virginia University Cancer Institute. Dr. Stout is an internationally recognized expert and leader in the field of cancer rehabilitation and survivorship care.
In this episode, we discuss:
-Functional morbidity in cancer survivors and the role of rehabilitation
-Evidence for rehabilitation and exercise interventions to support individuals with cancer
-Physical therapy clinical, research and education needs to develop survivorship care models
-Why every clinician should be familiar with survivorship care
-And so much more!
For more information on Nicole:
Dr. Nicole L. Stout is a renowned health care researcher, consultant, educator, and advocate. She is research assistant professor in the School of Medicine, Department of Hematology/Oncology at West Virginia University Cancer Institute.
Dr. Stout is an internationally recognized expert and leader in the field of cancer rehabilitation and survivorship care. She has given over 300 lectures nationally and internationally, authored and co-authored over 60 peer-review and invited publications, several book chapters, and is the co-author of the book 100 Questions and Answers about Lymphedema. Her research publications have been foundational in developing the Prospective Surveillance Model for cancer rehabilitation.
Dr. Stout is the recipient of numerous research and publication awards. She has received service awards from the National Institutes of Health Clinical Center, the Navy Surgeon General, and the Oncology Section of the American Physical Therapy Association. She is a Fellow of the American Physical Therapy Association and was recently awarded the 2020 John H. P. Maley Lecture for the American Physical Therapy Association.
She holds appointments on the American Congress of Rehabilitation Medicine’s Cancer Rehabilitation Research and Outcomes Taskforce, the WHO Technical Workgroup for the development of Cancer Rehabilitation guidelines, the American College of Sports Medicine President’s Taskforce on Exercise Oncology, and also chairs the Oncology Specialty Council of the American Board of Physical Therapy Specialties. She is a federal appointee and co-chair of the Veterans Administration Musculoskeletal Rehabilitation Research and Development Service Merit Review Board. Dr. Stout is a past member of the American Physical Therapy Association Board of Directors.
Dr. Stout received her Bachelor of Science degree from Slippery Rock University of Pennsylvania in 1994, a Master of Physical Therapy degree from Chatham University in 1998 and a clinical Doctorate in Physical Therapy from Massachusetts General Hospital Institute of Health Professions in 2013. She has a post graduate certificate in Health Policy from the George Washington University School of Public Health.
Read the full transcript below:
Karen Litzy: 00:01 Hey Dr. Nicole Stout, welcome to the podcast. I am so excited to have you on today. So today we’re going to be talking about for all the listeners, cancer, survivorship and morbidity burden among growing populations, probably around the world, certainly in the United States. But Nicole, before we even get to all of those sort of big topics, can you define for the listeners what cancer survivorship is?
Nicole Stout: Yeah, thanks Karen. That’s a great question to start off with. And it’s a little bit of a Pandora’s box right now. So we’ve historically defined cancer survivors as anyone from the point of their cancer diagnosis, really through the remaining lifespan that that individual has. So we consider a survivor from point of diagnosis and you know, it’s sort of different or it’s kind of different than what the word expresses.
Nicole Stout: 01:06 The word survivor, I think in some kind of patient means they’re done with treatment, they’ve survived. And you know, we’ve seen a bit of pushback in the last few years around people who don’t necessarily identify with the word survivor. So if we go back to 2006, there was a very important report that the Institute of medicine released called lost in transition from cancer patient to survivor. And this is where the term came from. Basically that IM report was critical because it said, Hey, medical community, you’re doing a great job of treating cancer, that disease, but you’re doing a terrible job of helping these people transition back to their life when they’re done with treatment. They have a lot of functional morbidities, physical, cognitive, sexual, not managing those things. So this term survivorship was put forward. The idea of managing people to become survivors was put forward.
Nicole Stout: 02:05 And what’s been very exciting is to see the evolution of emphasis and focus on better managing the human being that goes through the disease treatment in addition to managing the disease. But we’ve come so far with treatments and in some regard, some people who have advanced cancers for example, will be on cancer treatments for the rest of their life. And you know, I participate in a lot of social media groups and I hear these people say, I’m not a survivor and I’m never going to be one. Eventually I’m going to die from my cancer. I know that. And it’s a matter of time. And so they don’t identify with the word survivor or survivorship. So, you know, we’re sort of moving away from that a bit and we’re talking for now without individuals who are living with and beyond cancer. And I like to use that terminology. Even though survivorship is prevalent in the literature and prevalent in, you know, our conversations and in oncology circles is how we describe it. But I think we’re trying to be more sensitive to the much, much broader population of individuals who are going through cancer treatments today.
Karen Litzy: 03:19 Yeah. And I liked that phrase, living with and beyond cancer, it seems a little more inclusive to me. Is that why you prefer that phrase?
Nicole Stout: 03:29 I do. I think that encompasses anyone who ever had a cancer type know who is in treatment, who is a, what we call an ed has completed treatment and has no evidence of disease. And it’s also those individuals who may be in palliative care, who are progressing towards end of life, who are still being treated or managed in various ways. So I think it is more encompassing and reflective really of the broad, broad scope of this population.
Karen Litzy: 04:04 Yes. Because I think oftentimes, and myself included, people think you either have cancer or you don’t. After you’ve gone through treatment, you don’t have it in you’re a survivor. So you forget about that population of people, like you said, who have cancers that they’ll be in treatment for the rest of their lives.
Nicole Stout: 04:26 Yeah. And that that is actually a growing population with more sophisticated treatment technologies and changes that we’ve seen around the immunological therapies, the hormonal therapy treatments. Many of these targeted agents as we’ve come to so call them. And we are seeing individuals live much, much longer with disease, with stable disease, we’re able to stabilize it. And so therefore what they would have died from in six months or a year, they’re now surviving. I have years on continued temporization treatments. And so how would we describe those individuals? And yeah, let me make sure that the supportive care needs of those people are met and identified and met. It is a very broad population. So I think sometimes we say survivorship and it is not nearly as homogenous as, you know, that group of you either have cancer or you don’t. You’ve been treated and you’re finished. Now some people, for some folks that is the case. But for many, there’s this very gray area that is the remainder of them.
Karen Litzy: 05:39 Yeah. And I think saying living with cancer treatment or living through cancer treatment and beyond is just a little more sensitive to the person. Like you said, the person behind the cancer. Because oftentimes when you read articles or even whether it’s in a scientific journal or mainstream media and you think about cancer, they are always talking in percentages and numbers but not in the person. And so this kind of brings it down to the personal level. Now you mentioned it a couple of times, as we were talking here about different morbidities related to cancer or cancer treatment. So can you talk a little bit about what people undergoing treatments or maybe have completed their treatments might be experiencing?
Nicole Stout: 06:37 Yeah, that’s a huge topic. We could spend hours just talking about that. But first of all, just in general, when we say morbidity, we’re talking about the complications and the side effects that impact an individual’s ability to function. So we’re talking about functional morbidity. And the good news, the good news is this. The good news is we have a growing population of individuals who are living with and far beyond their cancer diagnosis. We talk about the population of cancer survivors growing. And you know, we look back to like the 1970s, all types of cancers. We were looking at about somewhere between a 40 and 50% survival rate to five years. So we have, and today we have dramatically driven that number much, much higher when we look across all cancers. That number today is around 70%. But when you drill into some of the more commonly diagnosed cancers like breast and prostate, those survival numbers to five years or even higher, upwards of 90% plus.
Nicole Stout: 07:47 So the good news is more people are being treated and getting to that side of your Mark of survival with no evidence of disease. And that tells us a story that they’re more likely to live the rest of their lifespan, but they are living with significant functional morbidity. And so the side effects of cancer treatments are things that we absolutely anticipate. We know that when people go through different types of chemotherapies or mental therapies, radiation therapy, you named the therapy, they are going to be side effects that negatively impact their function. The issue is how severe is the impact? How disabling does it become and does it persist? So multisystem impacts from these interventions. Chemotherapy is a multi, it’s a systemic approach to managing disease burden. And unfortunately chemo is not selective. It doesn’t go into your body and say, Hey, here’s a cancer cell and there’s a cancer cell and it wipes out rapidly dividing cells.
Nicole Stout: 08:54 So is the systemic impact to the body. Your immune system is suppressed, you know, your blood counts drop, you become anemic, you become fatigued. Some chemotherapeutic agents cause cardiac complications and cardiotoxicities some chemotherapeutic agents we know are highly neurotoxic and cause peripheral neuropathies. None of these. And there’s a spectrum, right, of the severity of that toxicity that people experience. And so some of those are mild, some of those are more severe. That it is the majority of patients going through treatment will experience at least one or more many experience, more than at least one about 60% experience, at least at one or more functional morbidity. And so when I talk about function, I want to say just sort of as a caveat, I always say I talk about Function with a capital F, meaning that it’s not just the physical function. You know, I think in physical therapy we think about movement and mobility and gait and balance and you know, activities. But there’s cognitive functioning as well. There’s sexual functioning, there’s being able to assume your psych.
Karen Litzy: 10:10 Yes.
Nicole Stout: 10:10 Social and psychological functioning and all of that, assuming your roles and your daily life. So we have to think very broadly, but when we talk about the morbidity burden, it’s very real associated with cancer treatments in the short term. So while people are going through treatment, we expect to see it. But here’s the trick. When treatments are done and withdrawal, people do recover to a very high degree. They regain their strength and mobility. But many of them suffer with persistent morbidity. And that disables many from going back to work or resuming their prior roles. And again, those can be across systems. And they can be encompassing of the physical, the cognitive, et cetera.
Karen Litzy: 10:55 And that gives me a lot to think about as a physical therapist. So if I might be seeing a patient too, let’s say they have completed their chemotherapy, radiation, whatever their treatment was a year ago as the physical therapist, it sort of behooves me to ask these questions of them. So even though I may have a patient who’s recovering from breast cancer that’s coming to see me for knee pain, but these are things that if you are the treating healthcare provider, you have to have in your head and kind of ask these questions of them, of those different systems. Right?
Nicole Stout: 11:41 Absolutely. And that’s actually a great and very critical point to make for physical therapists. And you know, even more broadly, occupational therapist, speech and language, all of our rehab cohort, you know, you said one year after treatment that the thing about cancer treatments, and I refer to them as the gift that keeps on giving because even though an individual finishes treatments, the treatments are oftentimes not done with them. Radiation therapy is a great example. We see individuals have side effects of radiation therapy in the acute timeframe, of course that we can see for example with chest wall radiation and breast cancer, we can see changes to the lung tissue, the bone and the cardiac function even years beyond the completion of treatment in five years, 10 years. So it behooves us to think about the history of cancer but not just did it have a history of cancer and concerned about recurrence of disease with what I’m seeing in my assessment.
Nicole Stout: 12:41 That’s one little piece of it. But the bigger question is, is the impairment that I’m seeing in this patient in front of me somehow related to their cancer treatments? Quite possibly, I would say yes. And if it is, are there things that I need to know about cancer and its treatments so that I can optimally manage this patient? And I would say yes to that as well. It’s funny because in, I’ve been a PT for over 20 years now. I’ve worked in cancer for the majority of that time. Almost 19 of those 20 plus years have been exclusively cancer. And I still today have physical therapists say to me, I don’t really see cancer patients in my practice. And my response to them is they see you every day. They see you everyday. Someone who has had a history of breast cancer with radiation therapy to the chest wall on the left side 10 years ago.
Nicole Stout: 13:38 And you’re seeing them as they are deconditioned, they may have dyspnea, they’re now having some cardiac complications that can absolutely be related to radiation cardiotoxicity. You’re seeing someone’s three years out from prostate cancer treatment who is now having some balance deficits and issues, has had a fall at home for example, do a close assessment of their sensation, because they probably have residual peripheral neuropathy directly related to their neurotoxic chemotherapeutic agents. So we know that many of these side effects persist and can cause what we call these late effects, which are the downstream side effects that patients will experience. And a lot of it is musculoskeletal, neurological as well. You know, there are changes that can happen with regard to sensation, cognition, memory, those types of things also can persist for, can come on more substantially later after the completion of treatment.
Nicole Stout: 14:43 So there are functional needs someone’s going through treatment, but those needs may be, they may be less, they actually may be more in some folks as they age. Because by the way, there’s that pesky thing called aging. I’m done with cancer treatments five years, 10 years later. But you know, you’ve also aged whole cluster of what are the co-morbidities that we’re facing that this individual is facing. You know, what type of lifestyle behaviors are they choosing. So really looking at that from that very encompassing perspective and in the short and the long term, not negating that history of cancer, even though it was, you know, five or seven years ago.
Karen Litzy: 15:26 Yeah. And you know, you kind of answered the question I was going to ask and that’s as a physical therapist, why should we care? Well, I think you answered that one very well, but let’s talk about the evidence for rehabilitation. And exercise interventions for these individuals with cancer. What does the evidence tell us?
Nicole Stout: 15:43 Yeah. And so when you asked why should we care, not just to alleviate their morbidity and to give a good quality of life and better function, but there are big, big issues that these folks face that caused downstream medical and healthcare utilization than escalate costs, pain medications, imaging, additional hospitalizations. So we should care from an individual perspective. I want my individual patient to be functioning. We should also care from a system and a societal perspective that we can help to alleviate that burden. So the exercise or the evidence, boy, where do I start? The good news is, as I said, multi-system impact for many of the cancer treatment interventions. And that’s everything from surgery through hormonal treatments, including everything in between. But the goodness is there is evidence to demonstrate the benefits of rehabilitation intervention for nearly any patient with any disease type across the continuum of cancer care.
Nicole Stout: 16:50 From the point of diagnosis through end of life, there’s evidence to support our interventions. And you know, I always say that about cancer oncologist everywhere. Cancer does not discriminate based on body region. It does not discriminate based on system impact. It doesn’t discriminate based on race, based on gender. Everybody is at risk for having a cancer diagnosis. Now you know, there are some nuances there that level of risks. So we have to be thinking about that evidence very broadly. And so if we start at the beginning, at the point of diagnosis, there are some populations for whom a prehabilitation exercise intervention is highly recommended. We have seen over the last decade, the idea and concept of prehab is, you know, many times we make a diagnosis for a patient with cancer and it is not emergent to treat them. Now some types, it is some types of leukemias.
Nicole Stout: 17:49 We immediately begin treatment like the sun doesn’t set, we treat them. But for a number of populations, there’s testing, there’s workups that are done. There’s lab work, there’s imaging and that can take several weeks. And so in populations like lung and colorectal, we had started to see these prehabilitation exercise programs put into place and there’s a nice body of literature that has grown and has strengthened demonstrating the benefit of therapeutic exercise, aerobic conditioning, moderate intensity supervised over the course of about two to three weeks. What it does is it prepares them to enter, whether it’s surgery or chemotherapy. First it prepares them to enter. They are cancer care continuum in a much better physical performance status. Really the exciting thing in lung cancer with the pre habilitation exercise that we’ve seen some evidence, the lung cancer population in general, many of them are not in good physical performance status when they’re diagnosed.
Nicole Stout: 18:52 And some of them by virtue of that are not candidates for surgery. They’re not candidates for the ideal regimen of chemotherapy because of their performance status. And we’re starting to see evidence that that prehabilitation exercise intervention can actually convert someone for being a non surgical candidate to the surgical candidate. And that is, that’s where we need to really be looking longer term and saying, does the rehab intervention improve survival in that population? The question is not, you know, something that we haven’t answered yet but not far from being plausible. So that’s evidence sort of from the point of diagnosis. We also have a large body of evidence around that post usually surgery is the first stop for some, for most folks and that perioperative time period. And it just makes sense. You know, the PT, the rehab consults, for especially our head and neck population, we talk about oropharyngeal, laryngeal parasite as we sort of put those into the head and neck population.
Nicole Stout: 19:56 Immediate referral for speech and language pathology should be done in that patient population. Immediate referral for PT or OT console for upper quadrant for cervical mobility, first those things should be standards that should become standards of care. The evidence is building in that regard. And then as patients move through treatment, the chemotherapy, radiation therapy, sometimes chemo, radiotherapy combined, is sometimes the next stop. And around that time period the exercise literature supports intervention during chemotherapy, the conditioning to help to mitigate fatigue, moderate intensity, low intensity exercise for individuals to alleviate distress, anxiety, depression. So exercise prescription is something that we’re really starting to see more focused on. The American college of sports medicine just released new guidelines last week, providing some very specific evidence around exercise prescription. So we’re getting to the point where we can actually prescribe exercise for targeted impairments that individuals are experiencing during cancer treatments.
Nicole Stout: 21:17 There’s strong evidence around fatigue management exercise. To moderate and low intensity for fatigue management. There’s strong evidence around lymphedema using exercise to help for women who have, especially in the breast cancer population. There’s strong evidence also around using weight bearing exercise to mitigate bone density loss that happens with many of the hormonal agents. So I know I’m sort of picking and choosing out of the air here, but in general, what do people experience when they go through cancer treatments? Debilitating fatigue is probably one of the most prevalent impairments across all cancer types. There’s also so deconditioning that comes along with that and you know, that’s a starting place for exercise interventions and you know, half the battle I feel with the rehabilitation intervention. And I feel like my role sometimes as the PT on the team, half of the battle is engaging the patient repeatedly in a conversation about enabling them because as they go through treatment, they feel terrible.
Nicole Stout: 22:30 You’re sick. They’re fragile, they’re medically complex, right? Their blood counts drop, okay, let’s maybe low. So there’s risks and you know, it’s sort of like the docs will say things like, well, you know, I guess you can exercise but don’t overdo it. And that’s almost worse than saying don’t exercise. And so sometimes it’s just, you know, our role in rehab is so critical during that time period of treatment to see them in a repeated fashion. And by that I don’t mean, you know, two, two times a week for the duration of their cancer treatment. But you know, maybe it’s a monthly basis, maybe it’s every other month, maybe it’s every three months as they’re going through treatment for those check-ins. Re-assessing how their function has changed. Giving them guidance and support and enabling them.
Karen Litzy: 23:23 Yeah. And it reminds me of some of the work that I do with patients who have chronic pain is that it’s not like you said, two times a week for six weeks. It’s checking in, it’s helping to build their self efficacy so that they can do yeah. And they can do more for themselves.
Nicole Stout: 23:47 And within their own bodies and giving them permission to do it. Cause like you just said, well you can work out but not too hard. Well like, yeah, that saying, well that’s confusing and sometimes our patients need permission to feel more confident with their bodies. I had a patient say something to me once and I will never forget it and I use it in all of my talks and it’s always sort of at the core in my mind. And she said to me, you know, the medical oncologists, they may have saved my life that you gave me my life back and if I’m going to survive cancer, what is it worth if I can’t have my life back, at least to some degree to do things that I love to do. That just really hits at the heart of why rehabilitation is so critical for these individuals.
Nicole Stout: 24:39 Because yeah, that treatments that we have now, I mean, we’re detecting cancers earlier. The treatments are so much more sophisticated. Many people will go on and live their full lifespan and die from something else and however, it’s not good enough anymore for us to say. He said, I have cancer. You should be happy to be alive. You know, even if you’re suffering with pain or lymphedema or conflict fatigue or neuropathies and, or cognitive dysfunctions and you’re frustrated because you can’t think straight and you don’t have good short term memory. It’s not good enough for us to say you should just live with those things and be happy to be alive. Not when we have the evidence like we do around rehabilitation interventions. And I mean, I could go on about the evidence. We could get into specific impairments, pelvic floor, for example, returning people to continent.
Nicole Stout: 25:32 Again, that’s a place where prehab and then following them through the continuum of care. Makes sense. And you know, we in PT and in rehab has to get out of this episodic care mindset when we’re working with patients who have cancer. So that’s really where we went and we develop the prospective surveillance model. Way back in the early two thousands when I went to work at the Naval hospital in Charleston, Garvey and Cindy falls there, had developed this protocol for a research study and I went in and this prospective surveillance model said, Hey, we know people going through cancer treatment are gonna experience just awful side effects that are going to negatively impact their function. And if we know that ahead of time, why aren’t we using rehab prospectively to help to identify the changes, manage them early when they’re less intense and can be managed more conservatively.
Nicole Stout: 26:28 So we ran those studies over the course of the next 10 years and published extensively on this concept of prospective surveillance, which is start with rehab at the point of diagnosis, assess function at baseline, know what’s normal, follow that patient then at punctuated intervals, throughout treatment, one month after they start treatment, they’re going to have had surgery or they’re going to have started treatment. They’re going to start to decline. See them at that one month period, reassess baseline and identify clinically meaningful change. Everything might look great and then you say, good, I’ll see you in three months. And then we follow them on an every three month basis after that for the first year, every six months, then up to two years and you’re only out to buy. And what we found was that I do think that we indeed identified impairments early because for most people it’s not if they occur, it’s when, when is it going to happen?
Nicole Stout: 27:23 So we’re able to identify them early. We can treat them much more conservatively when the impairment is less severe rather than waiting for severe, debilitating fatigue or a big fat swollen leg, and trying to fix or rehabilitate, right? We have to be much more proactive and we have the tools to be able to do that. We have the clinical measurement tools, we have the problem solving skills as rehab providers. What we have got to change is our perspective on an episode of care. This really is a more consultative role for rehabilitation and I think that’s great. I think it’s a great place for us to think about moving to as a profession. Consultation in that, like you said, sometimes you just see the patient, we tweak a little bit on their program and you coached them a little bit and talk about some of the behaviors they want to move towards and talk about. You’re going to get there and you enable need and then I’ll see you in three months. But sooner if anything goes wrong, you know?
Karen Litzy: 28:21 And now this brings up to me an interesting question for you. So this, you said back in the early two thousands, this work was done on this, prospective surveillance. So now it is 2019 so you know where I’m going with this, right? So, as rehabilitation professionals, where are we? Are we doing this? Has this been put into mainstream practice? And if not, what do we need to do as the rehabilitation professions?
Nicole Stout: 29:00 Yeah. So my heart is really as a researcher and it takes time. It takes time to do good studies. So that protocol kicked off in 2000. We didn’t publish really our first remarkable studies until 2008 so it took us that eight years to enroll enough patients, analyze the data, come up with a full data set. You know, we completed our enrollment, we had the full data set. So in 2008 we published the first article from that prospective surveillance trial and then we published many, many more that the first was lymphedema, we published on shoulder morbidity, we published on fatigue and it was sort of this cascade after that, you know, once we had the data collected. So I’ll start by saying it takes a long time to do good quality research. So really I sort of start the clock around 2008 and we’ve all heard the adage it takes 17 years for something to go from, you know, the research being published to actually implementing it in practice.
Nicole Stout: 30:08 So I looked around at my research, okay, I’m out waiting 17 years. How did the escalate the timeline to get this into practice? And, I encourage individuals who do publish, to think about how you advocate for your research. And so where are we right now as a profession? Well for the first few years it was challenging to get people around their head around this concept of prospective surveillance. We had some uptake in some larger cancer centers who said, this makes sense, let’s implement and put a physical therapist in the cancer center, which I think is an ideal situation. It’s hard to do though because again, in hospital systems we’re in our cost centers and you know, the rehabilitation department, you have to have her referral to PT. I mean, we’ve got to find ways to overcome all of those barriers.
Nicole Stout: 31:03 So, I would say one moment that was a real catapult for us was in 2010, the American cancer society had identified the evidence around prospective surveillance and they said, do you think that this is ready for sort of an expert review panel? And I said, hell yeah. And so I got to work collaboratively with them and some other colleagues in putting together an expert consensus panel on prospective surveillance. We ended up after a two day symposium look, did the research, worked in groups and teams for about another year and publish 16 articles that came out in a supplement to cancer in 2012. And that I feel like was a bit more of a pivotal moment for us. You know, these research studies were great, but to pull all of that together with a group of experts in a consensus forum and say, this is a model that we need to think about for cancer patients because if we start at the beginning, not just with physical function, but if we start at the beginning with things like assessing someone’s cognition, assessing their family status, assessing their financial status, assessing their nutrition status, and we follow them prospectively, all of those things are going to take a negative hit at some point during cancer treatments.
Nicole Stout: 32:21 So I think prospective surveillance lends itself to a much larger cancer supportive care model, which is how I have been describing it. And it is my intent to really focus on how we can study that model and look at better avenues for implementation in this new position that I’m in now at West Virginia university. This is my goal, which is amazing. Now how, so, you know, if we look toward the future and hopefully what you will be able to achieve in your colleagues across the medical spectrum, what are there policies that need to change that will impact the future of cancer survivorship or the future of living with cancer and beyond? Yeah, so the good news to that is there are a lot of things we can impact because we’ve laid this foundation of the evidence. We have laid this foundation of expert consensus and there’s been a lot between that 2012 and today, more and more providers in rehabilitation services are becoming aware and engaging in cancer.
Nicole Stout: 33:36 You know, it’s not something we prevalently teach in our curriculum in PT school. Think about how you learned about cancer. You learned about cancer in the negative. You learned all of the contraindications to your modalities and exercise and cancer was always one of them, right? You would say in your practical, okay, ultrasound, great, don’t do it over the eyes. Don’t do it on a pregnant uterus and cancer. So we find it in the negative for so many years. We have generations of therapists out there who love cancer and negative that never learned about the interventions to help to impact improve someone’s function going through cancer treatment. So we’re seeing that change and it’s changing in how do we know it’s changing? Individuals are engaging in cancer rehabilitation networks. We’re seeing far more publications. We’ve published on this. A couple of years ago we did a billion metric analysis of the cancer rehabilitation literature and we’ve seen this tremendous upswing in the evidence base and an increase in volume.
Nicole Stout: 34:39 We’re also seeing more therapists move towards specialty practice and evidence of that is what we have seen culminate in the last year with the first ever deployment of the oncology board specialty certification exam. We had 68 people pass the first exam. So we now have a growing conduct contingency and it will continue to go of therapists who are oncologic clinical specialists, which is fantastic. So we are positioning ourselves, we are moving forward. But when you ask where do we go in the future, I really think of three things. Number one is impacting policy, like you said, second is impacting education. And third really is impacting research. And so I think where do we need to move to in the future? We’re starting to see the clinical practitioners really grow. We’re starting to see residency programs develop. So from that perspective of the clinical focus, there’s evidence, there are pathways that’s developing.
Nicole Stout: 35:41 We have to start thinking about how do we embed this better into our curriculum. And this was last January in PTJ, the January issue of physical therapy journal. I coauthored a commentary article with Dr Laura Gillcrest, Dr Caringness and Dr Julie silver and Dr Catherine Alfano. We were all putting forward commentary on a recent national Academy of science, engineering and medicine report about longterm survivorship for cancer. And basically that report said rehabilitation should be utilized throughout the continuum of care, cancer care in order to contribute to that are longterm outcomes. And if that not doing so, not including rehabilitation during cancer treatment is almost negligence based on the breadth and depth of the literature that we have. So that was a pretty strong statement in that workshop document. So those are the types of things. Recommendations from the national academies will help us change policies.
Nicole Stout: 36:48 And by policies, I mean, you know, it’s not just how do we get paid for what we do, but also policies around, standards, policies that our accreditation bodies use to designate cancer centers. In fact we are seeing, I think they were just released today, the commission on cancer, which accredits probably 95%, I think it is, of cancer centers around the country. So they’re a big gorilla, their standards for an accredited comprehensive cancer center and include a standard for rehabilitation care services. It used to just be a criteria that you had to have a referral source to rehabilitation. But in 2020, the new standards that will come out from the commission on cancer actually has a rehabilitation care service standard. So it’s been elevated. That’s going to be critical for us because it will require your cancer committee in your hospital to identify policies and procedures for rehabilitation practices in oncology.
Nicole Stout: 37:56 So, you know, this is a place where we’ve got to start to see uptake in from our rehabilitation directors or administrators in large healthcare systems. The PTA, you know, we were really gonna need to see them start to put forward recommendations. How do we do this to practice? What is the best practice? What are some tools and tool kits that we can rule out. So those things, those policy changes are drivers for us. The education piece, I’ve spoken to a bit, I think embedding more education into curriculum for the entry level PT. And I think it’s critical. You know, we get so bogged down in, well, you know, the capte requirements are, but they are in our curriculum’s already too tight and it’s a bit of a red herring argument because I see places around the country who have champions for oncology rehab who has put it into the curriculum.
Nicole Stout: 38:51 It just takes someone to understand what is the best practice look like for an educational model and how do we implement it. So places like Oakland university in Michigan, Emory in Atlanta is working right now on elective modules. So there are some real novel ways that these are being incorporated into PT curriculum. And the third area that I think of for the future is research. And you know, as I said, wow, we’ve seen an explosion in research in the last decade. It’s phenomenal. A greater volume. A lot of that has focused on intervention. It’s been within some very specific populations like breast and prostate. There is a lot of breast and prostate, understandably. But we need to look at going beyond. We really should be thinking about how do we look at populations with regard to our rehab interventions of cohort studies, large population studies, and we’ve got to start thinking a little bit beyond end points.
Nicole Stout: 39:54 Like function, function is important, don’t get me wrong, it’s the core of what we do. But if we improve function through rehab intervention, does it change the downstream utilization of healthcare services? Does it mitigate costs? Do we see them spend less time in the hospital? Did they have less than, do they adhere to their chemotherapy better? Do they have less severe toxicities? Do they have better overall survival? So they’ve got to think about some different end points and take a bit of a health services research approach. I think in oncology rehabilitation going forward. That’s what I would love to see as the future and really at the core, the change in clinical practice so that we are a proactive consultative risk stratifying, triaging, screening, and proactively assessing profession when it comes to dealing with oncology.
Karen Litzy: 40:52 Yeah. And, and you really teed it up for me to ask you this last question here. My question is what advice would you give to your everyday clinician working, whether that be an inpatient or outpatient to allow them to begin to think differently about cancer?
Nicole Stout: 41:19 And that’s critical because the fact of the matter is we look at places like Johns Hopkins and university of Penn and MD Anderson and those are like the preeminent cancer centers in the country. The truth of the matter is the majority of people get treated for cancer and community hospitals right down the street from where you live and in outpatient, freestanding oncology clinics. So the likelihood that you’re going to see them is very high. So it is important for, as I said, the general therapist. It’s also important for specialty practice therapists to improve their knowledge base in cancer. So how do you do that? There are some great resources. I’m always going to point to the APTA oncologic Academy for physical therapy. We’re now an Academy. We used to be the section, I still call it the section.
Nicole Stout: 42:13 But we have an Academy for oncologic physical therapy and there are phenomenal resources there. They do continuing education programs. They provide fact sheets. They often have great evidence base that you can access to understand what are the measurement tools they should be using, what are the questions I should be asking someone. I feel there are also some, you know, continuing education courses focused specifically on the general therapist and I teach one of them. So there’s my bias opinion and my disclosure there with great seminars, but I tell people that in the beginning of the course, one of the first things I say is my goal is not to spend two days with you to get you to become an expert in cancer rehab. My goal is to change the way you think about every single patient that you see regardless of the diagnosis, regardless of the setting that you are in.
Nicole Stout: 43:05 If they had a history of cancer, what questions do you need to ask? What might you be seeing in your intake that is indicative of side effects of disease treatment, late effects or even metastatic process. The other flip side of that that we haven’t talked about and certainly helped me to delve into is that as primary providers, as frontline providers as we are in rehab, right? The direct access. Now, how many of us ask, about screening, cancer screening? How many of us ask questions? How many of us even know what the screening guidelines are for cervical cancer, for breast cancer, for prostate cancer, new screening guidelines for lung cancer. Again, I think that’s a great way for physical therapy professionals to brush up in their knowledge base and to start to have these conversations. I’m not going to be the one to order a low dose CT scan for my patient who’s at risk for lung cancer, but I might be the person to plant the seed with them and to incite a behavior change if no one else on their medical team has talked to them about it or if they’re hesitant about it.
Nicole Stout: 44:12 Colorectal cancer screening as well. So all of those, we should take responsibility to have those conversations. And that is 100% of the patients that we see to ask those questions. So I think we need to sort of self-assess and say, how can I do this? Knowing that we had, we have 17 million individuals in the United States right now that we call cancer survivors. We are expecting that number to double, double by 20, 40 just because of the growing population, first of all. And because of the escalating rates of survivors, because we’re treating the disease so much better. So there are going to be far more of them with the aging population and far more needs for us to meet. So yeah, therapists should be asking themselves, what are the resources out there? There are a lot of places now hospitals, health systems do cancer rehabilitation programs.
Nicole Stout: 45:10 They’re doing continuing education courses and they’re doing conferences as well. So take a look at some of the, I know Mary free bed, rehabilitation center up in Michigan, Brooks rehabilitation hospital down in Jacksonville, Florida, Marion joy, Northwestern. Many of these rehab hospitals are looking at doing one day, two day symposium open, you know, for folks to attend. So many hospitals as well are doing these cancer rehabilitation one day symposium and NYU is doing one next year, university of Miami. There’s also an on pitch this because it’s fantastic. And the ICPTO, which is the international conference in oncology, physical therapy, physical therapy oncology. I see PTO, it will be in Copenhagen in may of 2020. That’s not a terrible place to go. This is the second that we, the second conference that we’ve done, the first conference we had over 280 participants from over 25 different countries around, well just physical therapists just in oncology.
Nicole Stout: 46:17 It was just amazing. It gave me tingles to be in that room. And so we’re hoping to have an even bigger groups. So those are just, you know, again, sort of a snippet of some resources that I can provide. But looking at each of those, I think you can delve deeper into the resources that they have and have them have available within the APTA within the Academy and within some of those other ACRM is another one. The American Congress for rehab medicine has a cancer networking group and that’s a beautiful place to go because it is interdisciplinary PT, OT, speech. You have behavioral psychologists, you have interventionalists, you have lifestyle medicine, desire, interest. It’s really great. And they have continuous track of cancer rehabilitation content at their conferences. Unfortunately their conferences in early November. So it’s coming up quickly, but every year it’s in the fall. Next year it will be in Atlanta. So you know, another great place to look for. How do I start to build my knowledge base in this area?
Karen Litzy: 47:30 Yeah, this is great. Thank you so much for all of those resources and we will put as many of those up in the show notes at podcast.healthywealthysmart.com. Quick question on some of those resources. When you were talking about the different screening tools, can you find those screening tools under the APTA’s oncologic PT?
Nicole Stout: 47:50 So if you’re talking about the Academy for oncologic physical therapy, the hotly debated title. Yes, there are. So screening tools for identifying functional morbidity. Yes. So the course that was the evidence database to guide effectiveness, the edge test scores for oncology has published over 25 systematic reviews and have looked at measurement tools with by disease type within different measurement domains. So for example, you can find how do I measure functional mobility in colorectal cancer? How do I measure best measure lymph edema in head, neck cancer? So it’s broken down by disease type and then domain of measurement. So that’s there. It’s an annotated bibliography on their website. So they give you a nice little simple compendium. But for the larger screening population screening guidelines, many of those are American cancer society and the us health prevention preventive task force. Those are, you know, large scale guidelines that are developed and put forward for screening for disease.
Karen Litzy: 49:02 Yeah, perfect. Perfect. Well that’s great. That is a lot of resources for people. So hopefully any rehab professional listening can, if you have no familiarity with any of this information, would you say where’s the first place they should go?
Nicole Stout: 49:21 Well, the first place, that’s a great question. And I can help you put some seminal articles up there too. I think there are one and the open access articles. Julie silver wrote a fantastic article in 2013, about impairment driven as a rehabilitation. I feel like it’s foundational. It’s a great starting place for someone to get their head around all of the stuff involved with cancer treatment and the functional morbidity. And then I think the PTs for PTC oncology Academy is a great place. But also if you’re an OT or speechie, you can join the Academy of oncology, PT, you can be an affiliate member, you can get access to our journal and our resources.
Karen Litzy: 50:06 Oh, that’s cool. Good to know. That’s very good to know. And you know, I think as from what I’ve got out of this conversation, because I am not embedded in with the oncological Academy but what I am have come to realize through this conversation is that regardless of your setting, you may in your career encounter a patient that has had cancer or is going through cancer treatment and regardless of whether you’re in sports, PT, orthopedics, neurological pediatrics, odds are you’re going to treat someone at some point with a cancer diagnosis present or past. And to understand the basics of how that might affect overall systems is incredibly important regardless of whether you work at Sloan Kettering full time within specifically cancer population or you are the physical therapist for the New York Knicks, you know, you may encounter this population.
Nicole Stout: 51:32 Yeah, that’s really a beautiful summary. Karen, I appreciate the way you articulated that because I like to say oncology is everywhere and that’s exactly it. It doesn’t matter the setting you’re in, it doesn’t matter what specialty you practice. It doesn’t matter geographically where you live. It does not matter, you know, age, gender, et cetera is, it’s there, it is everywhere. Multi-system impact across body systems. So I think that’s it. And across the lifespan. So I think it’s beautifully summed up with that. You just said that, that’s how we think about it. Oncologists everywhere. So every patient that you see there is either the risk of them having a cancer diagnosis in the future. So are you talking about the screening guidelines for the chances they’d had a diagnosis in the past and then asking yourself, is that impacting what I’m seeing here in front of me? There’s so much we can spend an hour talking about pediatric oncology right now we’re talking about red flags, you know, but look around many of the continuing education consortia around the country, med bridge. You know, many of those have a variety of content or are in process of building content for continuing education always look at the references. CSN is a great place to go to get a ton of oncology resources.
Karen Litzy: 53:00 Got it. And that is coming up in February over Valentine’s day weekend in Denver, Colorado. So if you’re a physical therapist or not, maybe you just want to go and hang out with 13,000 other PTs. You can go to Denver and you look at the oncology track for CSM.
Nicole Stout: 53:20 Definitely bring your sweetheart, make a ski weekend, I guess with the ecology content. Yep, definitely.
Karen Litzy: 53:32 Excellent. All right, so before we wrap it up, I asked the same question to everyone and that’s knowing where you are now in your career, in your life. What advice would you give yourself as a new grad out of PT school? So this is the advice you would give to you.
Nicole Stout: 53:48 The advice I would give to me, it’s funny. People would say, if you look back, what would you change? And I always say not a damn thing. I guess my advice to myself is what I hold close to my heart and what I convey to others is go for it. Don’t be hesitant to take on something new or different because the new and different is what is going to expose you to a pathway you never would have imagined. I never would have imagined coming out of school that I would be doing oncology work. I was worried about in PT school. I didn’t know that this career pathway could exist. I didn’t know a clinical research pathway was something that I could even pursue. And as the opportunity came up, if I would’ve been hesitant, if I wouldn’t have been interested in taking the risks, so go for it. Don’t be afraid to take a risk. And sometimes that means moving to a different city, that might mean taking a pay cut. You know, a lot of times if we chase the things we love, we’re not necessarily chasing the money along with it. I think if we chase a big paying salary, sometimes miss things above, so go for it and be open to try and taking those different pathways.
Karen Litzy: 55:02 Yeah, great advice. And now where can people find you if they have questions or they want to talk about oncology physical therapy?
Nicole Stout: 55:12 Oh, you can find me on Twitter, on social media outlet. I really used to try to engage professionally. So it’s @NicoleStoutPT. And you know, you can certainly find me there. My Facebook accounts were private. That’s where like family and friends stuff. But definitely access and hit me up on Twitter or LinkedIn yet. Another great place. I post a lot of our research articles there. I’m on LinkedIn, so you can certainly connect with me there. Or just email me and always see how many times you can just cold call or cold email. It’s some of the most engaging conversations I’ll get on the phone with anyone. I will fly anywhere to talk about kids or rehabilitation and you know, some of the best conversations that started with, Hey, I don’t want to bother you, but you have some time to talk and I’m happy, you know, to start a conversation via email. So more than happy to engage.
Karen Litzy: 56:09 Perfect. And Nicole, thank you so much for a really great talk and I think that you have given the listeners a lot to think about and also a lot to look up into research and hopefully spark someone out there to, this might be the path I would like to take. So thank you so much.
Nicole Stout: 56:24 Well, I thank you for the opportunity. I’m just grateful for everything that you’ve done to put PT on such a stage and I’m really excited to have been a part of that, so thank you.
Karen Litzy: Thank you so much. And everyone out there listening, thanks for listening. Have a great couple of days and stay healthy, wealthy, and smart.
Thanks for listening and subscribing to the podcast! Make sure to connect with me on twitter, instagram and facebook to stay updated on all of the latest! Show your support for the show by leaving a rating and review on iTunes!