Good afternoon, and thank you for joining us today on our session discussing disparities in healthcare of cancer rehabilitation patients. My name is Ekla Gupta, and I will be your moderator for this session. I'm an assistant professor at the University of Texas MD Anderson Cancer Center. All four of our hosts today specialize in cancer rehabilitation. Joining me today, we have Dr. Charlie Mitchell, who is an assistant professor at Carolinas Rehabilitation at Atrium Health. A fun fact regarding Charlie is that he has an identical twin. Next we have Dr. Nicole Stout, who is a research assistant professor at the Department of Hematology Oncology at West Virginia University Cancer Institute and School of Public Health, Health Policy Management and Leadership Department. She is also an assistant director of the Cancer Survivorship Program. Her focus is on cancer care delivery and implementation of research on prospective models of care for survivorship and cancer rehabilitation. Her fun fact is that Nicole grew up in Pittsburgh and is a diehard Pittsburgh Steelers fan. Last but not least, we have Dr. Anna Huang, who is an associate professor, congrats on your recent promotion at the University of Texas MD Anderson Cancer Center. Her fun fact is she did not learn how to ride a bicycle growing up. However, she learned last year over the pandemic when her five-year-old twin's training wheels came off and now they ride together as a family. Of note for this session, we will take questions after each portion as well as at the end. I will introduce, sorry, I will hand it off to Dr. Stout now for an introduction to this topic. Thank you, Dr. Gupta, and thanks to everyone for joining us. We welcome you to this virtual session and we're excited to talk with you about the disparities that commonly see that impact individuals with cancer needing rehabilitation. We're going to frame this discussion around the social determinants of health model. You may be familiar with the social determinants of health from a public health perspective, but we really want to talk today and move through each of these domains and bring relevance to these domains and how they influence individuals going through cancer treatments. Social determinants by definition are the conditions in the environments where people are born, they live, they learn, they work, they play, and worship, and they age. All of that affects a wide range of their health, their ability to function, and their quality of life outcomes, as well as their risk. As we move through today, each of us will cover these various topics, considerations for access to rehabilitation services, the built environment that individuals live in and how that influences their outcomes in oncology and in rehabilitation, their ability to socialize and engage, financial issues that they face, and economic stability, as well as education, access to education and quality material to promote health literacy and awareness. A bit of a different framing, I think, in rehabilitation, but really one that's very influential in the disability realm and is being promoted as well by the World Health Organization through their Rehabilitation 2030 efforts. I'm pleased to hand back off to Dr. Gupta to go ahead and kick us off. Thank you, Dr. Stout. I'll be talking about education and access. Unfortunately, I still have no disclosures. It's still a goal. But like I said, I'll be talking about education, access, and I'll include a portion on health care access as well and quality. We'll talk about health literacy, awareness, and then especially the World Health Organization initiative. So what is health literacy? It is defined as the degree to which individuals can obtain, process, and understand basic health information. And services that they need to make appropriate decisions. There are a lot of factors that contribute to the health literacy, including socioeconomic factors such as resources. These can include financial insurance, questions, concerns, homelessness and geography. As you'll see throughout the talk, there's quite a bit of overlap in some of the areas, but we each try to highlight certain aspects of health literacy as well as talk about different aspects that contribute to patient care. So studies have shown that those with Medicaid or no insurance are likelier to have more post-operative complications when we talk about breast cancer patients, as well as have more mastectomies versus those with private insurance who can get breast conserving surgery. We find that insurance can play a role as well as also loss of insurance, loss of their home life as well. So research has shown that those that are homeless have less cancer screening behaviors, both from themselves and physicians. In addition, they have less compliance with chemotherapy and a greater likelihood of post-operative complications as well. Unfortunately, they also have less information seeking behaviors, so they have less knowledge based education and they have higher information needs due to this. We know that from a population-based cohort study in Denmark over a span of five years, that those with a lower education income and of the female gender had lower rates of referral for rehabilitation resources. We did learn from this study, however, that those with children at home had a higher rate of referral for rehabilitation after cancer. So this suggests that there was some awareness to help rehabilitation for those with dependents at home. We also know that geography impacts rehabilitation. Certain counties, areas of countries, as well as lower and middle income countries as a whole, face decreased access to cancer rehabilitation as well. It is estimated that lower middle income countries possess only 5% of total cancer care resources worldwide and have to serve patients for approximately 80% of disability-adjusted life years lost because of cancer. We will be hearing more about the economic and financial aspects of these disparities as well later. Other contributing factors to health literacy also include understanding what it means to have access to hospitals and physicians as well as technology. This is especially highlighted during the COVID pandemic when technology was used to administer health care. For those without an ability to access laptops, smartphones or other devices, they did not receive the same access to the same level of health care or rehabilitation. This next slide talks about health care access and awareness. So as you can tell, there's quite a bit of overlap and this slide highlights specifically risk factors for breast cancer. From prior studies, we have learned that there are non-modifiable risk factors such as female sex, race, ethnicity and breastfeeding that play a role. There was a retrospective study of 280,000 women with non-metastatic breast cancer that showed that although African-American women were more likely to receive neoadjuvant chemotherapy than white women, they were less likely to experience a pathologic complete response to triple negative and HER2 positive breast cancers. Evidence also suggests that these women were often diagnosed with more biologically aggressive basal-like subtype of breast cancer. However, there's no evidence that these women then received different chemotherapy regimens than women of other races with the same biological subset of breast cancer. It is important that physicians be aware of such studies in order to educate their patients properly. We also know that African-American women are at higher risk of mortality related to cervical cancer, ovarian cancer and endometrial cancer. This is due to a combination of non-modifiable risk factors but also modifiable risk factors. And the modifiable risk factors, unfortunately, still include less access to early testing and healthcare. In addition, as we look at the modifiable risk factors, we realize that physicians should advocate for their population and include physical activity, obesity, smoking and alcohol intake as part of this education process. We know that the intake of processed food has been studied extensively and we know that this disproportionately affects lower income populations. Education regarding increasing physical activity can play a role in both prevention as well as ongoing health awareness for the risk of other cancers as well. Once again, we know that lower and middle income countries also face inadequate resources to promote health awareness. And that includes the public health campaigns and initiatives that could occur due to cost. This next slide is an important slide. It basically was part of a paper by Silver et al that showed the importance of understanding that physicians of underrepresented minorities, LGBTQ, disabilities and women are less prevalent overall. And then these physicians are often also under-supported. This leads to a lesser diagnosis of cancer and also less rehabilitation access for patients. More studies need to be done on how to support these physicians so that they can continue to push for health awareness in populations and for themselves. So, the last part of my talk is about the World Health Organization initiative. Rehabilitation 2030 was created and it is a call to action to advance global access to health quality rehabilitation as an essential health care service for individuals with non-communicable diseases. The objective of Rehabilitation 2030 is to create a package of rehabilitation interventions that will then strengthen health systems across the world with better awareness and accessibility of rehabilitation resources with the goal to improve population health. Oncology was designated as one of the Rehabilitation 2030 priority areas. As you can see on this slide and the following slide, there were 10 areas that were highlighted in order for the organization to continue to pursue and provide enough awareness and education with resources. This is the next slide. And this is also posted online in the World Health Organization initiative page specifically about Rehabilitation 2030. So, in terms of cancer rehabilitation, a systematic review of rehabilitation recommendations was performed by a technical working group established in 2019. This included our very own Dr. Stout and others and was recently published. They excluded articles related solely based on pharmaceutical interventions, complementary and alternative medicine. So, they reviewed 4,897 articles and 69 of those had guidelines that were rehab specific, but 37 did not have any specific recommendations regarding assessments or interventions. Out of the 32 then included in this systematic review, they found that many identify rehabilitation services across cancer types and treatments, but low rehabilitation utilization rates exist. This suggests that guidelines may be overlooked by oncologists. It also suggests that rehabilitation providers need to consider having evidence-based clinical care pathways established, especially for breast, prostate, head and neck cancers, lung, colorectal, hematological, sarcoma, myeloma, esophageal, brain, and melanoma cancers, which have referrals for rehab guidelines based on specific criteria. This could be functional or a time point in the trajectory of treatment. There are challenges to this as rehab infrastructure in oncology care is relatively underdeveloped, and unfortunately, few oncology rehabilitation guidelines exist. They tend to be more so individual groups rather than being extrapolated to non-academic practices that also follow these guidelines. Given the functional morbidity that negatively affects most cancer survivors, improving care consistent with the guidelines may help both function and quality of life for patients. The future directions include policy forums and accredited bodies speaking towards this need for rehabilitation, cancer care, and promoting guideline adherence. National organizations such as the NIH and then the National Institutes for Health and Care Excellence in the United Kingdom, the National Quality Forum in the United States, the Australian Commission on Safety and Quality in Healthcare, and the accredited organizations such as the American College of Surgeons Commission on Cancer should help fill these gaps. The new COC guidelines have now published new standards for rehabilitation and the survivorship program. They also suggest collaborative clinical models to enhance guideline compliance and inviting a rehab professional into oncology guideline development panels. The use of patient-reported outcomes can also help with referrals, and there is a need for linkage between rehabilitation and oncology. With that, I'll include my references and then open it up for any questions on the chat. I actually am having a little trouble seeing the chat. There are no chat questions. Okay, perfect. So let's go ahead and next we'll move on to Dr. Charlie Mitchell. All right, hey everybody. My name is Dr. Charlie Mitchell. I'm from Carolinas Rehabilitation. I appreciate having the opportunity to speak with you all. There is a chat box and since we're live feel free to just type stuff in and towards the end I'll try to address those best I can. So no disclosures. Today I'm going to talk about one of the social determinants of health being the economic stability specifically. So let's get going. The U.S. Department of Health and Human Services issued a Health for People 2030 goal to address several aspects of the social determinants of health and one of those goals is just to meet their health needs through economic stability and helping people earn steady incomes. Their data suggests that about 11 percent of Americans live in poverty. That percentage is closer to 20 percent for Black or African Americans emphasizing that some of our patients are more vulnerable than others and if you live in poverty you likely can't afford healthy foods, health care, housing, sometimes must choose one of these basic needs at the cost of neglecting the rest. People with steady employment are less likely to live in poverty and more likely to be healthy so this is the rationale to address employment goals specifically. So let's talk about how my talk today aligns with this economic stability goal. Here's my outline. My presentation will first introduce the economics of cancer, then second define financial toxicity, and third address how we as physiatrists can help our patients return to work and maintain economic stability. So let's begin. So health insurance coverage is primarily employment-based in the United States. If unemployed, you are four times less likely to have health insurance and are significantly less likely to be up to date with your age-related cancer screenings. Without economic stability, you may not be able to prioritize your annual PCP visits, preventive health, and nutrition. These are some of the financial reasons why people who live in poverty are more likely to be diagnosed with cancer at advanced stages. Post-diagnosis of cancer, this population has higher mortality rates, most notably for colorectal, liver, lung, and cervical cancers, and this is due in part to the advanced stage of diagnosis. However, there's more to this picture. People who are employed may also lack job security, a livable wage, or adequate benefits. Benefits such as paid sick leave, flexibility in work schedules, will impact your ability to retain employment throughout cancer treatment and recovery. Another way to conceptualize the economics of cancer is quantifying theoretical lost earnings from premature death due to cancer. A 2020 research article identified that non-Hispanic Blacks had higher age standardized years of life lost and lost earning rates compared to non-Hispanic Whites for the same cancer types. But simply put, they died younger with similar cancer diagnoses. The researchers then calculated how much lost earnings could have been avoided if the health disparity simply did not exist, and the authors concluded that about $3 billion in lost earnings could have been avoided in the United States alone. So how we close the gap on mortality is beyond the scope of this talk, but the authors suggested that the answer likely lies in access to effective cancer prevention, screening, and treatments that's cognizant of our current healthcare disparities. In 2019, there were almost 17 million cancer survivors, and now in 2021, there are an estimated 2 million new cancer diagnoses. As the five-year survival rates continue to improve towards 70%, we can expect millions more people reaching survivorship status. In a recent study, 60 to 90% of cancer survivors had at least one physical or cognitive impairment, and you may be well-versed that we as physiatrists can help our patients by optimizing functional independence or decreasing fall risk and hospital readmission rates, but after this talk, I hope that you'll also add reducing financial toxicity to our patients as well. So let's discuss financial toxicity. Financial toxicity is a relatively recent term popularized by a few Duke physicians around 2013, arguably before then, but this has been popularized by them. It describes the financial side effects of cancer and its treatments. It's important because financial toxicity can impact the receipt of high-quality cancer care, so beyond the physical, mental, and emotional burden of cancer, we should add financial toxicity to the list. It's similarly called financial distress, which is reported in up to 50% of patients diagnosed with cancer in some studies. Cancer is one of the most expensive medical conditions to treat, which may require multiple treatments, including surgery, radiation, and chemo, and treatments are becoming more expensive and specialized, and cancer survivors may require ongoing cancer treatments or care for the late effects of their treatments as well. So financial toxicity therefore describes how out-of-pocket costs can cause financial problems and affect both patients and their family. It includes the direct costs of all healthcare expenditures and the indirect costs such as lost earnings, liquidated assets, and premature death. Pictured here is a model of financial toxicity which should help us understand where we can intervene as physicians. We can divide financial burden into expenditures, wealth, and financial anxiety related to a cancer diagnosis and the treatment plan. Let's start with expenditures on the far left. The drug and treatment costs are mostly out of control of physicians, but we can play a role here as well with respect to prescribing medications covered by their insurance or finding appropriate generic alternative prescriptions. Sometimes this means spending a few more minutes filling out paperwork for prior authorizations to insurance companies or identifying manufacturer's coupons if available. Another impact that we can make with respect to patient expenditures is providing durable medical equipment, which can be very expensive and sometimes not covered by insurance at all. For instance, in Charlotte, there are non-profit organizations that can help by donating new or lightly used durable medical equipment to patients who are uninsured or underinsured under the age of 65. It's possible that there's non-profits like this in your city, so consider looking at that to see if you can help your patients. Next, let's look at anxiety and discomfort on the far right. Here, the authors are referring to the general anxiety about being a burden to others and the fear of the overwhelming cost of frequent doctor visits and expensive specialized drugs. We can help our patients here with reassurance and as needed referrals to psychology and just communicating really that burden. Many larger cancer centers and rehab facilities have behavioral health resources available to them just to help patients navigate diagnosis and treatment, so it can be helpful to remind patients of these resources if you have them. And lastly, let's look at how financial toxicity relates to wealth. Wealth is derived from employment, salary, savings, assets, even family support with respect to alternative means of income. And remember, at the beginning of our talk, I mentioned the economic stability goal of steady income. So as physiatrists, we can help our motivated and appropriate patients remain at work during their treatment and return to work following treatment. Sometimes that's at the exact same role or with or without restrictions, and sometimes it's with a new career. But before we get into return to work programs, let's discuss what it means to return to work. Returning to work is more than just a paycheck for some, and a 2018 article titled Unfolding the Values of Work helped to explain that. The authors discussed patient perspectives on how work can provide meaning and is often a part of our social identity. Many patients had work relationships and colleagues that were important to them, and they don't want to lose that as that part of their life. People felt that working helped them contribute to society in a meaningful way, and that they wanted to use their education and skills. These perspectives can help us see why returning to work is important to a lot of our patients. So it's important for our patients to really understand their rights, and especially the rights under the Americans with Disabilities Act that I'll discuss further now. Let's briefly discuss work and disability. So around 50% of people diagnosed with cancer are of working age, and with retirement age being pushed back further and further, that percentage is only expected to increase over time. The good news is that some data suggests around 75% of cancer survivors do return to work, but what about the other 25% of the survivors? Some proposed reasons include functional impairments, fatigue, and psychological stressors, including depression, if not just they're near retirement age already, and then they just go into retirement. But it's important that for the patients that want to return to work, lack of workplace accommodations has been shown to be associated with depression and fatigue, which negatively affects their returning to work. The U.S. Equal Employment Opportunity Commission's website posts a thorough article to help people with new cancer-related disabilities and to help them navigate employment concerns. The article provides several examples for how the American with Disabilities Act will protect you against workplace discrimination, and so I urge you to explore it further on your own time. The link is down below on this slide in italics. People with cancer face barriers to equal job opportunities and are discriminated against in part due to misperceptions about their ability to work. Even when the prognosis is excellent, some employers expect cancer survivors to take long absences from work or be unable to focus on work duties and therefore may refuse to hire or prematurely terminate them as an employee. In many circumstances, cancer survivors easily meet disability standards due to the minimum requirements, so let's discuss what those are. Two things, quote, a record of impairments substantially limiting a major life activity in the past, and quote, major life activities which are substantially limited or would be limited if cancer were to occur. So any physician can help patients file for disability, but I believe what really sets us apart as physiatrists is our ability to help them restore their function and get back to work. So let's review the return to work in our cancer population. A recent retrospective study discussed return to work for patients with multiple myeloma, for instance. The authors chose multiple myeloma because relative to other hematologic malignancies, their data demonstrated that multiple myeloma had a higher risk of not returning to work. The median age of diagnosis for multiple myeloma is 65 to 70, but about a third of them are diagnosed under the age of 65, which is our working class. Current standard of care is about six months of induction chemo followed by a stem cell transplant, which can result in remission for about five years or more, but relapses are common. The inclusion criteria for the study require remission after a stem cell transplant, which is reasonably when we'd want to engage our patient population for returning to work anyway. So of the 186 patients that were reviewed, about 80% were employed at the time of diagnosis, and of those employed, only about 30% returned to work in the medium time frame of about five months after their stem cell transplant. So the people who did not return to work cited physical impairments as their major reasons for not returning to work, and we know that many patients with advanced multiple myeloma have significant pain, high risk for pathologic fractures, if not some already, fatigue, which are all things that physiatrists can help address. The predictive factors for return to work by three years post transplant included being self-employed, having an undergraduate degree, having three or more children, so family support, and a household income that's above the poverty level. So here's another discussion, a 2015 Cochrane systemic review article that looked at 15 randomized control trials, including over 1,800 cancer patients. There's a broad base of cancer diagnoses in there, so that's, it's mostly, I think, breast and prostate, but some of the pearls of wisdom we get are still relevant. The studies are grouped by intervention, so they group them as such. The medical intervention alone, which is usual cancer care, like systemic treatment, surgery, etc. Physical interventions, like therapies and exercise. Psychological educational intervention, such as self-care education on stress and coping, group discussions about symptoms and their side effects, as well as multidisciplinary interventions, vocational counseling, therapies, exercise, psychological education combined. So as we know, more is more, and the key takeaway here is that multidisciplinary interventions resulted in a higher return to work rates. So at Carolinas Rehabilitation, we're in the process of developing a multidisciplinary return to work clinic for a cancer population. We didn't want to create a work disability paperwork clinic, therefore we're being explicit about requesting referrals for patients who are actively seeking to return to work, and caution should be taken with educating your referral sources about the clinic goals and parameters, otherwise you might start receiving more referrals for disability paperwork and functional capacity evaluations, which we can definitely help answer questions for those providers. But, you know, if you're a patient seeking disability, in many of those cases, some of the more complex chemo-radiation transplant patients really need to talk about, talk to their prescribing oncologist about the medical limitations beyond the functional limitations that you would be addressing. So before I break down our planned clinic flow, I want to take some time defining some key terms. Work conditioning is the multiple hour physically demanding job simulation tasks in a supervised clinic space, typically with like an occupational therapist. Work hardening adds a psychological and counseling component to the work conditioning plan, and that's typically done at a pain center. Return to work and transitional programs are the multidisciplinary clinic service lines that provide occupational therapy, physical therapy, and speech therapy with neuropsych evaluations, as well as physiatry. The therapy is therefore focused more on deficits preventing the return to work, and then the transitional program would also include a limited job simulation session, but it's not as rigorous as work conditioning or work hardening for that. Many of you have already been providing return to work services to your patients with cancer, but as mentioned in the RCTs before, multidisciplinary approaches are more likely to succeed. So here's a rough description of what our clinic flow looks like. We start with an outpatient physiatry referral from colleagues. We identify a cancer patient who wishes to return to work. Then at the initial physician encounter, we need pieces, we need to piece together their cancer treatment history and clarify future treatment plans, which might impact future physical and cognitive impairments. Then we medically manage those impairments, such as offering clinical judgment and recommendations for safety and prescribing medications, such as pain, spasticity, depression, and sleep. And at the conclusion of that initial encounter, we cleared them for our return to work clinic pathway and placed referrals for neuropsychology evaluations, and if appropriate, we'd also refer to supportive oncology, integrative medicine colleagues to address their own palliative care needs, if not already done so. The second stage of the return to work clinic is when the patient is screened by our occupational therapists, physical therapists, and speech therapists. And they'll review the patient's job requirements and get back with us during our multidisciplinary meeting to discuss the therapy teams and neuropsychology team's insights. And if we're ready to move forward, then we appropriate, with the appropriate therapy service line, we'll engage more focused therapy sessions on their functional impairments that limit the safe return to work. So occupational therapy will perform work simulation and environment modifications. Physical therapy might address gait, balance, and energy conservation. Speech might address attention and memory, executive functioning, like cognitive fatigue. So our return to work clinic is just getting started, so I'm hopeful that in future talks I can present more data about our clinic progress and successes, because I'm really excited about how that can make an impact on our patients' lives. So here's our summary. People who live in poverty are more likely to be diagnosed at cancer advanced stages. 50% of cancer survivors have at least one functional cognitive impairment. Return to work is complicated by a functional cognitive impairment and lack of workplace accommodations. And multidisciplinary return to work clinics have been shown to have the best results. All right, so let's see. We'll look at some questions. Let's see. So here's a question. We struggle with teams who would send patients for disability paperwork because of functional decline. How do you educate referring teams that you're not a disability paperwork clinic? Well, that's a great question. I guess it depends on the relationship you have with the provider. It might be better to have a one-on-one conversation face-to-face, just so that y'all are aware of the expectations of the clinic that it is, your goal is to return them to work. And it might help to delineate that you can help clear them functionally, but you don't feel like you're able to clear them medically for what they do need or what they can and cannot do, for instance, for disability. I think it's inevitable that we will also be filling out disability paperwork. And sometimes it might be appropriate, but if the provider is actually like the oncologist is providing that treatment, it's really more important that they address those specific questions that you might not be able to answer with respect to medical treatment. Okay. So here's another question. How do you measure cancer fatigue and cognitive fatigue? So there are several different measures that you can use for cancer fatigue and cognitive fatigue. With our clinic, we're not actually using measures that are like research-driven. We just ask a battery of questions. At the Levine Cancer Institute, we use a service called Tritium, which I don't mean to plug that for any reason or another, but it actually has a set of questions that addresses on a Likert scale of including fatigue among other things. Okay. I hope I answered some questions. I think I'm starting Okay. I hope I answered some questions. I think I'm starting to run over some time, but I appreciate your time. Thank you so much. Okay, I think we're on to May. Let me bring up my screen. And there we go. So moving on, my aspect of this talk will focus on the neighborhood and the built environment and how it contributes to disparities for our cancer patient population. I think sometimes when we think about neighborhood and build environment, you know, we immediately think of, you know, sidewalks and parks and that's a component of it. But what I hope to do is maybe to take your mindset around the neighborhood and built environment and broaden it a bit and think more about it from a participation perspective and the various domains of participation. I do continuing education courses with the companies that you see listed here, for which I am a paid consultant. So we know that about 60% of our health outcomes are predicted by our zip code. And many times when we say zip code, we immediately think about rurality versus non-rurality. So if you live in a rural area, yes, you have issues with access via geographical barriers and distance challenges many times to access health care. We know that cancer incidence rates are higher among individuals who live in rural areas. And we also know that those individuals tend to be diagnosed with cancer at much more advanced stages when they are diagnosed and the mortality rate is trend slightly higher for individuals in rural areas. But distance and and rurality is only part of the story when we talk about access. Having lived in the Washington, D.C. area for the better part of 15 years, I can tell you that I was close to D.C., but it was not exactly easy to get there and to access care sometimes. So thinking about distance and geography, we're going to talk about some of the barriers to consider and how to overcome those. There are also safety barriers. So when we think about our zip code, we think, where do we live? Where are we located? But think within your zip code, what things exist in your neighborhood or are absent in your neighborhood and in the environment that you live in? Are there pollutants like light, smog, factories, noise? Those things also contribute to health outcomes and may be magnified in the cancer patient population. There may also be safety barriers, which pose challenges to engagement in healthy lifestyle behaviors and health behavior choices. So when we think about zip code, think beyond just am I rural or am I urban and do I have good access because of those things? Because the predictors are influenced by a multitude of factors based on your zip code. So what's within, but also where are you located? When we think about participation, really, what is the goal for our oncology population? Get through cancer treatment, get back to living their life the way that it was before, or continue through cancer treatment and re-engage in life as best and optimally as they can. So participation really is influenced at multiple levels. And at each of these levels, we have to think about that neighborhood and built environment. And in rehabilitation, I think we do a really good job thinking about the home and the immediate environment. Adaptations in the home, assistive devices, home assessments, falls risk assessments. But really moving beyond that and thinking about the community, what is available or not available as far as community services that could help to enhance the participation of an individual with cancer. Those could be transportation services and the availability of county social services. Those could be things such as engagement with nutrition planning through subsidies that an individual could receive through their state or their county. We also have to think about societal values and cultural norms that influence participation. Areas where exercise, healthy nutrition, and values around health choices and health behaviors may not be what we think of as optimal in influencing health outcomes. So some of the barriers to participation, we break it down and get a little deeper into access and distance. Distance and time travel to see a specialist is a challenge. First of all, in cancer rehabilitation, we are a small but growing field, obviously. So it's even more challenging for patients to access services by a rehabilitation specialist when they have cancer. So the availability of specialists is a challenge and when they are available, we tend to be very busy and our wait times could be exceptional. So some of the opportunities that have been offered to improve access to specialty care services, well, could we increase the density of specialists? Yes. And I believe efforts are underway through the various professional associations to enhance residency and development in cancer across physiatry, physical, occupational therapy. So increasing the density of specialists in the United States is happening. And will go forward. When we get into the breakdown, though, of the rural versus urban discussion, we have to ask ourselves, is it really logical and reasonable for us to think that we will enhance the density of rural health care providers? It may never be reasonable to expect that we have the same provider density as a more urban area. So, for example, right now, the estimates are that there are about 54 primary care physicians for every 100,000 individuals in a metropolitan area. In rural areas, that number drops to about 40 primary care physicians for 100,000 patients. And you can imagine when you get into the specialty of physiatry, that's even less and then take it to cancer and it's even less. So maybe we don't need to, we will work on enhancing the number of providers, but how do we bring the providers to the patients, perhaps? How do we bring the providers with specialty care knowledge to the providers in those areas that are lacking or disparate or have a dearth of resources? So thinking and looking towards some of our mobile health-based interventions and our telehealth interventions, and there are two specifically that I will speak to you about as opportunities. The impact here is that we enable access to the right provider at the right time. How many patients we have engaged and encountered during or after cancer treatment, and they say, gosh, I wish I would have known about rehabilitation months ago, years ago. So getting the right provider in at the right time. This is incredibly helpful for patients and their caregivers. Being able to engage with them in their home environment also can help to reduce some of the financial impact of travel. We're learning through some of the mobile health and telehealth evidence that's come out of COVID that this is really influential in adherence. When patients can stay in their home and engage with the provider, they tend to adhere to their program and their recommendations to a much higher degree. So this is a schematic that demonstrates the COPE trial, and this is Dr. Andrea Chaville's work out of Mayo that was published in JAMA Oncology recently. And what they did was use tele-rehabilitation, not necessarily from the cancer specialist to the patient, but they used a fitness care manager or a physical therapist to advise the local physical therapist who's not a cancer specialist. They advised them in how to assess the patient and how to help with management strategies. Interestingly, and there was much, much more to the study, but what I want to impress upon you is that we think of telemedicine or telehealth sometimes as physician-to-patient, and we should be thinking also in terms of peer-to-peer collaboration. How can I bring my knowledge base to a local provider and help them to best treat the patient in the environment and the care delivery system that's most close and local to them? So it's nice if you are Andrea Chaville and at the Taj Mahal of the Mayo Clinic and very robustly funded through research studies and research funding, and that's a fantastic demonstration and outcomes from their project. But taking that to a pragmatic perspective of us in the community, well, if you're not familiar with Project ECHO and you're in a community hospital or you have access or are affiliated with a community cancer center, Project ECHO is the extension for community healthcare outcomes. This is a peer-to-peer consultative service that uses electronic medium for telehealth and telemedicine intervention. Really, the focus is provider-to-provider contact, consultative services around complex patients, complex situations, and learning opportunities. It's based out of the University of New Mexico. However, there are a number of ECHO hubs around the United States. Recently, the American Cancer Society and the Association of Community Cancer Centers have entered into relationships to develop more robust Project ECHO focus. There is not a focus right now just yet from Project ECHO in cancer rehabilitation. Safety barriers. These are also things that challenge our patients. We think about transportation safety, secure environments for our patients. When a patient lives in an area that is not secure, a high-crime area, an area where they don't feel safe in their environment, an abusive relationship, perhaps, that they are living in, these are things that incredibly increase their stress and their anxiety. It contributes to sleep dysfunction and sleep deprivation, which we know challenges positive outcomes in oncology and really is a driver of fatigue. There are enhanced opportunities for us to improve our patients' ability to move beyond their environment or find ways to improve the security in their environment. The environmental barriers that individuals experience also span the structural barriers in their home or their lived environment, but also the supportive services that may be available in their home or even in the community. Societal attitudes that contribute to food behavior and food choices are also very, very important. We know that nutrition, physical activity, and health promotion and health behaviors are so important to contribute to positive outcomes for individuals with cancer. So home assessment and simulation in the home and work environment is important, and it helps us to not only influence those behavior choices in a positive way, it does a tremendous service to our patients in improving their level of confidence. It also helps to contribute to caregiver support. So as we look at future direction, assessing participation barriers really comes to the forefront. And this is an interesting scoping review that Dr. Allison Lajate and some of her colleagues published just last year in support of care and cancer. Essentially looking at measures of participation in life activities in individuals with cancer and found, it may not be surprising to you, we do a very poor job of assessing participation in individuals with cancer. We've been focused at the impairment and impairment outcomes level, as opposed to elevating it to functional outcomes and participation measures. The participation measures that they did identify really focus on ADL function and participation in the home and participation in ADL and IADL activities, rather than looking at that larger social and environmental context. So they also identified that clinically relevant measurement tools are lacking. So I would encourage us as we think about future directions around assessing and improving our patients' participation. If we look at Dr. Hamill's triad of assessing participation, I think we do an excellent job in rehab of assessing the person and the task. But I would encourage us to think about how we can improve that assessment of the environment beyond just the home environment and home assessment. So I'm happy to take any questions. Let me just jump into the chat. Yes, I agree. We are specialists in function. The paperwork can be onerous. Often we may be the best ones to help with social determinants of health that adversely affect our patients' quality of life and access to services. I agree with that. I think that we are, first of all, in rehab, we tend to spend more time with our patients than almost anyone else. On their medical team. And we also spend that time talking about their life and their living situation. And we understand the medical context and the medical complexity that they're facing going through the cancer treatments. But we're sort of that supportive individual walking next to them through the cancer treatment, helping them optimally function. And I think it's a real gap that we are not more focused on those social determinants. Because I do think we are the optimal profession to help overcome some of those barriers. So I am happy to stop there. And I will turn it over to Dr. Ngo-Huang, who will finish us off for the afternoon. Thank you. And real quick before Dr. Ngo-Huang starts. We are going to run over hopefully no more than 10 minutes. But just please be aware in order to know if you have something else next. Thank you. Okay. Thank you all. Good afternoon. I'm Anne Ngo-Huang. I'm from MD Anderson Cancer Center here. And so just segueing into what Dr. Stott was talking about. I'm going to talk about the social and community context, access to healthcare, and then we're gonna wrap things up quickly with a case. And I'm gonna try to get to that case because I think it's really valuable in terms of high yield of the type of patients we see and the factors that we should be looking into in evaluating our patients. I have no financial disclosures. And so the social and community context. So back to our big picture image here in terms of what we're looking at. So for our patients with looking at social environment. So social environment is a big influencer in terms of health and wellbeing. Social engagement extends the lives. There's data showing that social engagement extends the lives of patients with breast cancer and improves quality of life after diagnoses. And you can measure that social support based on emotional and instrumental support. And social networks, unfortunately, they differ between our advantaged and disadvantaged or disadvantaged and non-disadvantaged patients. And then the concept of social isolation. So this is near complete or lack of interaction. And this is typically quantified by the number of people in one's network or the frequency of interactions with others or the level of perceived isolation. And so social isolation tends to be more prevalent in socioeconomically disadvantaged patient populations, including the chronically ill and in racial and ethnic minority groups. And so if you think that patients who have strong social networks, they tend to be healthier because their network members hopefully are discouraging detrimental health behaviors and they're encouraging more healthy lifestyle behavioral changes. So social isolation has been associated with smoking, physical inactivity and other cancer risk behaviors. And of course leads to increased mortality risk. And so just looking at social support when we see patients in cancer rehab, for instance, if we wanna start someone on a physical activity program, we're looking at the intervention, we're looking at the immediate outcomes, whether it's physiological versus body composition, mood, and then the health outcomes. But what we want to try to influence is that what we can try to manage is the behavioral and social determinants. And so what's really big in the literature is that are the motivators, that includes the oncologist. Our cancer survivors have been surveyed and they want to know about physical activity information, but they want to actually hear it from their clinicians, not just read it in a pamphlet or read about it on the American Cancer Society website. And so they want, so the care team are great motivators for these patients, also motivators are friends, family, and of course another cancer survivor. So we can have support groups, which we do at our cancer center. There are support groups for different diagnoses. I think that's really helpful for patients and of course their caregivers going through their treatments. We've ran a couple of trials of preoperative exercise for patients with pancreatic cancer, undergoing new adjuvant chemo and radiation in preparation for surgery. So we have run a couple of few of prehab trials. And in one of our trials, Nathan Parker, one of my partners in research here, had conducted a quantitative and qualitative study where he looked at physical activity influences in patients who are prescribed a home-based exercise program. So he looked at social support and he also looked at neighborhood walkability. So back to what Dr. Stout was just talking about, about the environmental context. And he found that there was a strong association between perceived neighborhood aesthetics and moderate to vigorous physical activity. We measured them using accelerometers to measure physical activity. And then he also interviewed the patients and found very common themes of social support, neighborhood walkability and physical activity resources as being big influences for physical activity. Patients expressed concerns about tolerance and preparing for treatment and having a motivation from their physicians as influences for physical activity. So he found that if you had more social support from friends and family and you had more walkable neighborhoods, this was associated with higher physical activity in terms of that moderate to vigorous physical activity on accelerometers when we measured them with our patients, when we measured patients' physical activity. And so these are a few quotes from our patients that went through the trial that were published in the paper. And the big one, of course, is that the clinicians providing support and encouragement. So I needed the support of my surgeon saying, this is pretty critical. The stronger you are going into surgery, the stronger you are when you're going to recover. The next one, my husband was like my whip. He reminded me that every day, maybe I could do X, maybe I could do Y. And so these are a compilation of quotes. And if you want to look back at a paper that was recently published, we have that there. And so just transitioning to access to healthcare, this was touched upon earlier in some of the other parts of the talk also, but I'm just going to go through and look at general healthcare access principles and provide a glimpse at healthcare access disparities in specific populations. So just a few examples here of healthcare access. So what Dr. Mitchell discussed about insurance access. So one in 10 people in the U.S. do not have health insurance. And this leads to inability to afford healthcare services. They may not have a primary care doctor to look over in terms of monitor primary prevention, and they may not be able to afford medications and testing. So that lack of preventative care of cancer screenings and treatment for chronic illnesses leads to our examples of the disparities. And then patients in rural areas, they have no access to healthcare service or limited healthcare access due to distance. And so the overarching goals for our oncology patients and our cancer rehab patients in general are to improve cancer screening process, improve access to cancer treatment, improve how patients navigate the healthcare system. So how do they get to appointments? Once they've had their screening test, how do they receive the results? Who refers patients if something comes back positive or needs to be followed? There have been some strategies to improve financial incentives, to motivate healthcare providers to provide this access, to screen for social determinants of health, value-based care. I know at MD Anderson in our H&P, if you upload the social history in our templates, there's actually a section that says social determinants of health, actually, that auto-populates into our notes. And so the other ways to motivate healthcare providers to provide is to incentivize them to provide holistic healthcare. And of course, like Dr. Stout discussed, access to technological resources to help facilitate our patients' care. And so just looking at a specific example here, there has been advances in terms of cardio-oncology and breast cancer survivors and increasing awareness of the toxicity, of cardiovascular toxicity involved with breast cancer treatment. But even so, black women experience higher rates of cardiotoxicity and cardiovascular disease-related comorbidities because of the risk factors involved in breast cancer, their cardiovascular, higher risk of cardiovascular disease, and then the cardiotoxic effects of treatment. And oftentimes these patients have access barriers in terms of just having fewer referrals and access to rehabilitation, lower access, low access to rehabilitation care. So are they getting referred? Do they have access? Are they actually using the resources if they exist, perceived bias? And oftentimes these specialty clinics are not in the geographic area where these patients live. So if you refer patients who have a cancer-related fatigue from their treatment for a comprehensive program and outpatient physiotherapy program, can they access it? Are they able to take time off of work to be able to do this? And if they've been laid off of work, do they lose their insurance? Do they have the benefits to be able to continue their treatments and access the care that they need to recover from their treatments? And so potential solutions that they proposed in this paper were to standardize preventative care, to establish more cardio-oncology clinics to preserve cardiovascular health, nursing education, that was really big in this paper in terms of early identification, monitoring and management of hypertension, and then cardio-oncology rehabilitation programs that extend from diagnosis to treatment. I know this is a really hard one. You have to be, I think, at a very large cancer center. We have a cardio-oncology specialty program in our department of behavioral sciences, but we have one cardiologist and she runs a program in the behavioral science department and we're looking at survivorship programs and cardiac health in different patient populations. But that's one program in our huge cancer center. So, and then in this next paper they looked at, they wanted to look at investigating potential disparities in diagnosis and survival of patients with gastric cancer. And so the gist of this is that they found that patients with severe disabilities were less likely to have surgery, have preoperative chemotherapy, receive palliative chemotherapy, and tended to have no cancer treatment. And oftentimes these patients were diagnosed later and that's because of poor access, access, limited access to primary care and potentially communication barriers. So mortality was higher in the severe disability group. So this is a pretty big study. They looked at 75,000 patients with gastric cancer and found nearly 17,000 patients with disability and just analyzed what the risk factors were and their ability to access treatment. And then finally, my final example is just looking at age. So ageism is the use of patient age in patient care and this causes disparities in screening, diagnostic procedures, clinical trials. So I think as a whole oncologists are trying not to use age for management, but older adults have limited access because of insurance or lack of, being able to afford their drug costs, mobility concerns, cognition, transportation issues. And so as rehabilitation specialists, like Dr. Stout said, we need to be the ones to ask about transportation. How are you going to get to your clinics? How are you going to get here for your physical therapy or occupational therapy appointments? And then to tap into our resources that we might have at our cancer centers, patient navigators, case managers, community health workers and social workers. And of course try to use telehealth as to help patients have access. Okay, I want to get through this case real quick because this is a typical patient that we see in our clinic. They're referred early on. So this is someone who's been referred early on in their cancer treatment to help with getting them through their treatment. So this is a 49 year old female, right-handed black married female with past medical history of diabetes, diabetes associated peripheral neuropathy, hypertension, obesity, chronic right shoulder pain and was diagnosed with right-sided invasive ductal carcinoma of the breasts with her first screening mammogram unfortunately at the age of 49. So she was seen in the local oncology clinic. They decided that they're going to have breast conservative surgery, radiation and chemotherapy. So treatment concerns in some of these patients that we're seeing. So the question is patient lives alone. Who will help her postoperatively or if they're going to do surgery? Who will help her care for her incisions? How is she going to manage these strains? She has this right chronic shoulder pain, still poorly controlled limits her use of the right arm. And so there's big questions about like, how will she be able to recover after surgery if she already has restrictions and limitations once the surgeons implement activity precautions with her? And then there's always that big question of during radiation and they're supposed to hold their arm high up in abduction. How are they going to be able to tolerate and get through radiation if she already has this significant profile of significant shoulder pain? Then the big questions of chemotherapy induced neuropathy. She already has neuropathy from her diabetes and then hormone therapy, arthralgias, bone health. These are big, big questions that patients have. So the barriers, she lives, so the barriers. So she lives with lack of social support. Her right shoulder pain, does she have access to physiatrists or is a musculoskeletal specialist of some sort access to physio and occupational therapist? Does her oncologist even address it or bring it up? Limited insurance benefits and how will she be able to access all the resources if they exist at her local community? And then just in terms of lack of health education of the treatments, will she develop chemotherapy or induce neuropathy or have worsening neuropathy, the possibility of hormone treatment and side effects. Does someone educate these patients about this? And so recommendations. If a patient lives alone, who will help her postoperatively? I think we have to tap into social work consult, looking at resources, identifying, helping her to identify a caregiver, health education in clinic. We've done this actually really recently at a patient, very similar presentation where we ended up having to have OTC the patient and help with positioning. And we brought in, we sent her back to the surgery clinic. They gave her some sample drains so that she could have some education and upfront so they could help alleviate some of her anxiety and stress over having surgery. And then the right shoulder pain referral to community PT and OT preoperatively. So some prehab for the shoulder pain so that she can get through her treatments and then be able to have, in terms of improved mobility and physical function, prehab in terms of before her treatment so that hopefully that helps and then providing significant health education for her so that she knows how to manage and navigate through her treatments. So we went through a lot in summary. I think it is very important that we are all aware of and able to apply some of these principles, this big picture of social determinants of health and caring for our patients with cancer from clinical care and research. I know even from applying for grants, there've been like direct questions asking, well, what can you do in your research program to address disparities and healthcare disparities for these patient populations that you wanna target? So I think it's very important as a cancer rehab specialist or a general rehabilitation specialist to be able to be aware of social determinants of health and be able to apply these principles and ask the questions and be able to help our patients navigate through their treatments. Okay, I think we've gone over. Thank you for everyone for hanging hanging in there. Are we asking questions? Looks like we have one question. How can we address communication challenges implicit bias and historical distress issues? You want to take that one, Dr. No or would anybody else like to? I can weigh in. I think this is you're pointing out multiple problems and we need multifaceted strategies to to intervene to make these improvements. I don't think there's one answer to address communication challenges implicit bias historical distrust issues. It requires us as providers to have awareness and to to obtain the resources that can help us to have better conversations. Part of it, though, is also incumbent upon us as a field, bringing forward faces and individuals of various backgrounds, skin color, ethnicity that that match our patient population. So diversity in our programs, diversity in our training and education and our residencies. But also, you know, having that open mind of listening to the lived experience of our patients and not being so quick to, you know, yeah, you have cancer, you have fatigue. We know we know that's common. Listen to the experience of that individual, because culturally, socially, environmentally, the place that they live, work, have aged influences that. And we have to step back and begin to accept that with with with greater responsibility. Thank you, Dr. You think education. Okay, no, no, just education. Like I said, I think at the roots of our training and providing education and a familiarity of what are the what are the struggles of patients who are socially disadvantaged is is very important. Sorry. Just in looking at looking at the comment from Dr. Guy, I think that would be an outstanding session for next year's conference. So I think if you have insights in in how we can make those improvements and or you have resources, bring those to the forefront, bring those to this conference. I think that would be an excellent session for for the conference for next year. Great. Sorry. So I think since we're a few over, we'll go ahead and stop here. But please feel free to send us any questions that we can address offline. And thank you everybody for joining us.

disparities in healthcare

cancer rehabilitation patients

education

access to healthcare

socioeconomic factors

Rehabilitation 2030 initiative

financial burden

employment goals

cancer fatigue

neighborhood