Live Your Best Life: How to Manage Fatigue and Adapt Routines to Maximize Quality of Life with GVHD

Live your Best Life: How to Manage Fatigue and Adapt Routines to Maximize Your Quality of Life with GVHD

December 9, 2020

Presenter:  Carly Cappozzo, Senior Occupational Therapist, University of Texas, MD Anderson Cancer Center

Presentation is 46 minutes with 16 minutes of Q&A.

Summary: Occupational therapists can help transplant recipients manage their fatigue, and redesign their lifestyle to improve quality of life, while recovering transplant and side effects such as graft-versus-host disease (GVHD).

Highlights:  

• Cancer-related fatigue is different than regular fatigue. It does not improve with rest but will improve with increased physical activity.
• For every day of inactivity, it takes four days of activity to get back up to your previous energy level.
• Cancer-related fatigue, anxiety and depression are all connected, and if you decrease the amount of one, the others typically decrease.

Key Points:  

06:59   The goal of occupational therapy is to make lifestyle or environmental changes to prevent or live better with injury, illness, or disability.

09:58   An occupational therapist will help a patient manage their symptoms by developing wellness routines.

11:16   Occupational therapy often includes strength-building exercises, much like physical therapy.

11:39   An occupational therapist can recommend ways to modify the home or an activity to optimize efficiency and safety.

11:56   Occupational therapy can help you arrange and modify your daily routines to prioritize what is most important to you.

25:23  It’s important to discuss anxiety, depression and fatigue with your healthcare provider and determine the factors contributing to these symptoms, sot that appropriate steps can be taken to reduce the problem.

28:53  Energy conservation training balances fatigue levels with activities that you need or want to do through planning, keeping a moderate pace, modifying activities, and prioritizing certain activities.

37:58  Lifestyle redesign can help improve health and quality of life by creating habits and routines that are healthy and personally meaningful to the patient.

39:11  Re-framing disappointing circumstances in a positive way has been shown to improve physical health, well-being, cognitive functioning, and reduce stress related biomarkers.

41:22  Behavioral activation is a form of cognitive behavioral therapy which focuses on changing what you do to change the way you feel.

This presentation was made possible, in part, by a grant from Kadmon, Incyte, and Pharmacyclics, an AbbVie Company and Janssen Biotech, Inc.

Transcript of Workshop

00:00  [Moderator]  Introduction of BMT InfoNet:  Good evening and welcome to today's webinar Live your Best Life: How to Manage Fatigue and Adapt Routines to Maximize Your Quality of Life with GVHD. My name is Sue Stewart, and I'm the founder and executive director of Blood & Marrow Transplant Information Network, or BMT InfoNet, and I will be your host this evening.

If you're not familiar with BMT InfoNet, we're not for profit organization that provides transplant recipients and their loved ones with high quality, easy to understand information about bone marrow, stem cell and cord blood transplants. We have a number of periodicals and publications, a peer support program, a website that has a lot of valuable information - and I encourage you to go to the GVHD section of that - videos from past webinars and conferences about GVHD, and we also do things like provide financial aid to patients, have a directory of transplant centers online, and provide personal assistance if you need help with a particular question or problem. So do feel free to reach out to us if you have any questions that we can help you with. That is the reason that we're there.

Pharma Sponsors:  Before we begin, I'd like to thank the following companies who provided an unrestricted educational grant that made this webinar possible. Our thanks go to Kadmon, Incyte, and Pharmacyclics an AbbVie company, and Janssen Biotech Inc.

 Introduce Speaker:  Let me now introduce to you our guest speaker, Ms. Carly Cappozzo. Ms. Cappozzo is a senior occupational therapist at the University of Texas MD Anderson Cancer Center in Houston, Texas. She developed, about five years ago, MD Anderson's first chronic graft - versus - host disease rehabilitation program with one of the world's leading stem cell transplant and chronic GVHD physicians. Ms. Cappozzo collaborates weekly with a multi-disciplinary team of GVHD specialists to evaluate and treat GVHD patients from around the world. And I think for many of us, we're not really familiar with how helpful the services of an occupational therapist can be in helping us to live our best life after transplant while we have GVHD, so I'm looking forward to miss Cappozzo's remarks. So please join me now in welcoming Ms. Carly Cappozzo.

02:38   [Ms. Cappozzo] Speaker Background: Hello, everyone. My name is Carly, and I'm very excited for this opportunity to meet with you all and share some of my experiences and knowledge about occupational therapy and how we can be of service and really empower you all to live your best life despite, or in the face of GVHD.

So, this is MD Anderson. This is where I work in Houston, Texas. And starting off with a little bit about me, I'm originally from Wisconsin, and I did my undergraduate and graduate programs both in Wisconsin at the University of Wisconsin-La Crosse. I have a Master of Science in occupational therapy. And before graduating, I completed a few clinical rotations. One was at an inpatient behavioral health unit, working with patients with mood disorders, like anxiety and depression, as well as patients experiencing acute psychosis or suicidality.

Then I moved down to Houston, where I completed a rotation on the inpatient rehab unit working with patients with spinal cord injury. And worked for a few years in the Houston area with a variety of different patient populations from solid organ transplants, like double-lung transplant, heart transplant, to orthopedic surgeries like knee or hip replacement or other conditions like open heart surgery after a stroke.

And then finally, I landed my dream job at MD Anderson in 2015, where I've been working since, primarily in the outpatient clinic, but I also occasionally will cover the inpatient units after-hours or weekends and as needed. And the reason that MD Anderson is my dream job is because it really combines my passions for addressing some of the psychosocial needs of the patients, helping them navigate one of arguably the most challenging experiences of their lives, and I also get to use my skills in physical rehab. So, addressing deconditioning, making custom splints and casts, which is another one of my specialties, and you can see some of my other interests along the right-hand side of the screen there.

04:56   Multi-disciplinary GVHD team at MD Anderson Cancer Center: Shortly after I started at MD Anderson, I was offered an opportunity to collaborate with, as Sue stated, one of the stem cell transplant and lead GVHD physicians at our institution to really establish OT and PTs role, occupational and physical therapies roles, within this multi-disciplinary team. He was seeing that many of his patients with GVHD had needs that weren't able to be met because they were coming from out of town and only there for a short period of time, and really needed someone to be specializing in their specific areas of concern and deficit and laying eyes on them on a consistent basis.

So I'm part of a team there that consists of the stem cell transplant GVHD physician, and several mid-level providers with experience with this patient population. We also have a dermatologist, an oral pathologist, and an OT and a PT. So, we see patients every week. And it's kind of the meeting of the minds where we all get to lay eyes on the same patient and use our unique lens to see, pick up on things that may be one of the team members wouldn't be able to see on their own. So, it's a really exciting and rewarding opportunity.

 06:18    Goals for Presentation:  So, our goals, today, are to help you understand the unique skill set of occupational therapists and how thinking like an OT can help you navigate many of the challenges of living with GVHD. We're going to learn a little bit about the relationship between activity engagement, fatigue levels and mood. And then I really want to spend the majority of time learning some specific strategies to maximize your ability to do the things that are most important to you. So, some of the strategies we'll discuss are Lifestyle Redesign, fatigue management strategies, behavioral activation, and the use of adaptive equipment.

 06:59   So what is occupational therapy? If you're not familiar with it or haven't had it as part of your treatment plan, so far, we're allied health professionals and our goal is to enable people of all ages to live life to its fullest. So, helping them promote health, make lifestyle or environmental changes, and prevent or live better with injury, illness or disability. And the way that we do this is very holistic, looking at the whole picture, so a client's psychological, physical, emotional, and social makeup. And then we use that information to help people in achieving their personal goals, function at the highest possible level, maintain or rebuild independence, and participate in everyday activities of life.

 07:45  So some common places where you might see occupational therapists would be helping children with disabilities to participate fully in school and in social situations, helping people recover from an injury and regain skills, and providing support for older adults experiencing physical or cognitive changes. And then thinking about the role of OT in an oncology setting, we are looking at the physical, psychological, and cognitive changes that are caused by cancer and cancer treatment to maximize a patient's independence and function and improve quality of life regardless of what stage they're at in the oncology journey.

 08:24  How occupational therapists help patients:  So, some of the specific things that we might take a look at would be ADLs, activities of daily living, like bathing and dressing, and making adaptations to the activities or the environment. Or rehabilitating patients to be able to do those activities more independently. We might look at lifestyle management, such as preventative health, improved fitness, education, emphasizing a patient's strengths and positive coping strategies that enable them to be in control of their lifestyle choices. We look a lot at sleep and fatigue management, education, and kind of practicing those energy conservation fatigue management strategies while doing some meaningful activities. And then we'll also look at cognitive strategies to address memory, organization, and low energy tasks that focus on restoring engagement in the most meaningful activities to a patient.

 09:24  Five approaches to maximize function and quality of life:  So how can an occupational therapist help? There are five different approaches that we typically take to maximize function and quality of life. And really, we're moving fluidly between all of these approaches throughout the rehab plan of care, and especially within oncology, stem cell transplant, and the GVHD patient population. There's a lot of fluctuation in symptoms, in physical abilities and what the patient's priorities are. So, we're moving fluidly between all of these approaches.

 09:58  Create and promote. That might look like education and training to manage symptoms and conditions more independently. So, if someone is newly diagnosed with skin GVHD, we will begin educating very early on about how to monitor for signs or symptoms of developing joint contractures. And creating wellness routines that include range of motion of all joints.

10:23  Prevention. That could be screening for early signs of disability or dysfunction. So, for example, when you're initially admitted to the hospital before a stem cell transplant, you're usually pretty high functioning, able to do everything independently. You haven't had all of that heavy duty chemo yet. And then we'll kind of put eyes on you and come check back in throughout your stay. And we might be one of the first ones to notice, "Oh, you needed to use the grab bar to stand up from the toilet today, but previously, you didn't. So, given that you might be at risk of developing some weakness, or it looks like you're having more weakness than you did previously, why don't we give you an exercise program or educate you on this to prevent it from getting worse."

11:16   Establishing and restoring. This is really that traditional rehabilitation where you're addressing strength, mobility through stretching, exercises, custom splints, or braces, learning stress and fatigue management strategies, and practicing your day-to-day activities.

11:39   Modify. This approach could be modifying the activity or the environment, the way that you're completing it, through use of equipment, positioning and strategies, home modifications, rearranging items within the home for efficiency and safety.

11:56   And then maintaining. So targeted activities are exercise, education, or examining and rearranging daily routines to allow a patient to continue to engage in what's most important to them, despite an anticipated decline due to illness, due to being put on high dose steroids for GVHD treatment, for example. We want to be able to maintain your strength despite one of the risks of being on that medication being decreased muscle strength.

12:35   So activity analysis. This is really the cornerstone of OT practice, and it's the lens and how we approach and look at activities that our clients need or want to do. So, activity analysis involves breaking down a task to determine all of the demands of an activity.

So, for example, the objects used, the space or environment the task is completed in, the skills both physical as well as cognitive skills, the energy demands. And then once you have an understanding of all of the component parts of each activity, you can look at and figure out which aspects are giving you the most trouble, and then figure out how to change the demands by altering the way that it's completed, and what would be an appropriate adaptation.

13:41   Analyzing the task of putting on compression stockings:  So, looking at the activity of putting on compression stockings, you may be familiar with that, it's a challenging task. Let's think about the objects used and their properties. So, the compression stockings themselves are very, very tight elastic. You have to stretch them over your foot. So very tight elastic. Are they a knee high, or are they a thigh high stocking? Are they open or closed toed? Are they like a regular sock style, or are they the velcro wrap? Do they have zippers? What the object looks like is going to have a huge determination on how you are putting it on. So, what is the object? What is its properties?

14:28   Space demands. Where is the patient getting dressed? Do they sit on a bed? Do they sit on a chair? Does the chair have back support that have arm rests? Is there space in front of the chair that they can put a stool in front of them and prop their foot up on?

14:45   Social demands. Does the patient have a caregiver at home and available to assist?

14:52   And then looking at the next one, the sequence timing and patterns. Is the caregiver home and able to assist when the patient is putting on their stockings in the morning, or do we need to make some adjustments to the sequence and timing of the sock putting on schedule to make sure that someone is available to help them?

15:13  Another thing looking at the social demands is, how does the patient feel about wearing compression stockings? Are they embarrassed to go in public with them on because they feel like they're ugly? If they're a young patient, they have to wear these compression stockings that they associate with someone who's older. Maybe we need to find them a fun compression stocking that has cool patterns and colors that match their outfits. Is that what the barrier is to them wearing the stockings every day?

15:46  What are the required skills to put on compression stockings? What is their grip strength like? Can they hold on to the top of the stocking and pull with enough strength to get it up the leg, or do they have GVHD that's affecting their fingernails so that they're very thin and brittle or have the ridges in them, and those are getting caught in the stocking that they're trying to pull them up?

16:12  What does the patient's range of motion look like? Are they able to bend and reach their foot, or do they have limited range of motion because of skin GVHD, or perhaps a vascular necrosis of the hips from steroids? Do they have a history of a hip replacement? So we need to... They aren't able to bend or rotate their knee out to bring their foot up to their opposite knee.

16:43  Another thing with skills is what about cognitive skills? If I give a recommendation of a different way to put on a stocking, for example, is the patient going to remember this when they get home, or would they benefit from a handout with a picture of how to do it or step-by-step instructions? Or should we show a caregiver how to use this alternate technique as well so that they can help follow through with it at home?

 17:13  Required body structures and functions. Does the patient have painful neuropathy or lack of sensation in their toes? Do they have any open wounds on their legs, and how can those be protected while they're putting on and taking off the stockings? Another thing to think about is how severe the swelling is? Is it only present for periods of the day or when they're standing for long periods of time, or do they really have to wear that compression all day long to manage it effectively?

17:43  Safety hazards. If a patient has neuropathy, what will be the best strategy for getting the stockings on, making sure that they can visualize their feet to compensate for the sensory deficit? So, for example, when they're trying to pull the stocking on to their foot, the little toe isn't getting caught on the outside of the sock and hurting them unintentionally. Do they have any precautions or comorbidities like that hip replacement or ABN that prevents certain positions?

18:14  So when I say that my goal is to help you to think like an occupational therapist, those are the kinds of things that I'm thinking of. So, I want you to think of not just the activity analysis of a certain activity, but also bigger scale ,zooming out a little bit. Not just look at one activity, but the series of activities that adds up to your daily habits, routines, and important roles in your life, like being a partner, a parent, an employee. And how you can use those concepts of activity analysis and the five approaches we discuss to not just change the way you do a specific activity, but the way you structure your day-to-day life so that you can work smarter rather than harder. Making sure that your life is in alignment with what's most important to you, regardless of your current energy and physical ability levels. It's going to take a little bit of thought and consideration on the front end, but it is totally possible to not just survive with GVHD, but to thrive, and not let this condition define you.

19:31  Cancer-related fatigue:  So, I want to talk just briefly about what cancer-related fatigue is, so that we have a shared understanding of it as we move on and talk about some strategies to combat and manage it. So, the National Comprehensive Cancer Network has defined cancer-related fatigue as a distressing, persistent, subjective sense of physical, emotional and or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity. Interferes with usual functioning. Is also of a greater magnitude and tends to remain after rest periods. Is disruptive to activities of daily living and has a profound negative impact on patient’s quality of life.

20:18  Cancer-related fatigue isn’t like normal fatigue:  So that's a very long and wordy definition, but I think the most important pieces that stick out to me from that are that cancer-related fatigue isn't like normal fatigue. So, it's much greater magnitude. A lot of patients describe having a hard time explaining this sensation to their family members and friends, because it's not something that they can compare to any other fatigue they've had in their life.

20:47  Cancer-related fatigue persists after rest:  Another important piece of that is that it tends to remain after rest periods. So, it doesn't respond to rest like normal fatigue does. Previously, you maybe had a long day of work and a lot of other responsibilities at home, you lay down on the couch and take a short nap and you wake up feeling refreshed. A lot of times for cancer related fatigue, folks will lay down and take a nap and wake up feeling just as tired, if not more tired, than they were when they laid down.

21:15  Criteria for diagnosis of cancer-related fatigue:  So, looking at the slide here, we can see that an official diagnosis of cancer related fatigue requires six of these 11 symptoms that are present almost every day for two weeks within a month. And looking at what some of those symptoms are, it's not just physical. Cancer-related fatigue also affects people mentally, so difficulty concentrating, short-term memory difficulties.

21:42  Difficulty processing information:  Another common complaint I hear is difficulty with word finding or taking just a little longer to process information. And it also affects you emotionally. It could be decreased motivation, irritability, not feeling like you're as good at or interested in things that you previously enjoyed. And this is also a very common occurrence.

22:04  Prevalence of cancer-related fatigue:  So, it's hard to give an exact measurement of how prevalent cancer-related fatigue is because it's a subjective measurement and there's a lot of different scales that are used to measure it. But the research is telling us that as much as 91% of adults with cancer report fatigue as a symptom that has prevented them from living a quote unquote normal life. And 88% have to modify their daily routines because of cancer-related fatigue.

22:44  Cancer-related fatigue, anxiety and depression are inter-correlated:  So, the relationship between cancer-related fatigue, anxiety and depression is a little more complicated than we would like. They're strongly correlated with one another. So, cancer-related fatigue is correlated with anxiety and it's also correlated with depression. But what we don't know is exactly how they're related.

So, does the fatigue cause the cancer patient to become depressed? Do cancer patients become fatigued because they're depressed? Or is there a third factor causing both depression and fatigue? And same goes for anxiety. What we do know is that they are correlated. So, if you have one, you're more than likely to have the other. And the magnitude of that correlation is slightly stronger between cancer-related fatigue and depression than it is for cancer-related fatigue and anxiety.

23:38  A reduction in fatigue decreases depression and anxiety:  Another thing that we do know is that there's some research to suggest that reductions in fatigue are paralleled by reductions in depression and anxiety. So, if we decrease the amount of one, the other one typically decreases.

So, thinking about how this relates to someone who's been diagnosed with chronic GVHD for example. They've just gone through, arguably, one of the most challenging times of their lives, been diagnosed with cancer, going through the grueling process of stem cell transplant, all the appointments, time at the hospital, and now they're finally excited to be returning to normal life. And then bam, they have a diagnosis of chronic GVHD.

24:29  A diagnosis of GVHD can make a patient sad, anxious and/or depressed:  I would be a little concerned about a patient who didn't find that experience distressing, to be honest with you. It is a stressful experience. But they're suddenly feeling stressed and anxious, sad, depressed about the new diagnosis. And those feelings are what's causing them to lose sleep, to have more fatigue during the daytime. It's interfering with their ability to work and enjoy time with their family, to do their valued leisure activities. And this is outside of the symptoms of the GVHD, then it's going to be important to learn some strategies to manage the feelings. So, despite it being a normal reaction, it could be very, very helpful to learn healthy ways to manage those feelings, so that they aren't what standing in the way of you enjoying life.

25:23  It’s important to discuss anxiety, depression, and fatigue with your healthcare provider:  I do also want to take a moment to say that if you are having any increased or new feelings of anxiety, depression, or severe cancer-related fatigue, it's really, really important to discuss that with your medical team and determine if there could be other factors contributing to these symptoms. Is it a side effect from a medication like steroids for example? Or would you benefit from medical management of your anxiety or depression?, Or would you benefit from speaking with a licensed mental health providers? So, this is not to say that this is the only or the best way to manage fatigue, anxiety, or depression. But regardless of what else is part of your anxiety, depression and fatigue management plan, these strategies that we're going to talk about today have been shown to be effective at decreasing the severity of symptoms and improving quality of life.

26:26  The vicious cycle of cancer-related fatigue:  So, this slide depicts the vicious cycle of cancer-related fatigue. So, we want to prevent you from falling into this cycle, where you start to feel fatigued, so you sleep more, do less, less physically active. And then from being less physically active, you become more deconditioned. And when you're deconditioned, you become more fatigued. So, as we said earlier, cancer-related fatigue isn't like other types of fatigue, so it doesn't actually improve with more rest. And it's actually been shown to decrease with increased physical activity levels.

27:05  Another important and interesting point to note is that for every day of relative inactivity, it takes four days of activity to get back up to your previous energy level. So, we really want to create a plan that will help you to make sure you're keeping up your activity levels, even when you don't really want to, because it will help you reach your goal of decreasing fatigue.

27:31  Short naps are better than long naps:  One trick and recommendation I give patients frequently is that if you're feeling really tired during the day, feel free to take a short rest, but limited to 30 minutes or less, because the goal is to save that deep sleep for nighttime only. That helps keep your circadian rhythm and your normal sleep schedule in check. Otherwise, if you're getting hour to two-hour long naps during the daytime, your body will expect and crave deep sleep at that time. So short rest, short nap, less than 30 minutes during the daytime if you just can't bear to continue to go on.

28:13  Increasing activity by doing enjoyable things can help reduce fatigue:  Another thing that can be really helpful when you're trying to break out of this cycle is to increase activity levels by doing things that are meaningful or enjoyable to you, rather than trying to force yourself to do physical activity for the sake of physical activity like exercise or something that isn't enjoyable to you. Because it's obviously a lot easier to do things that you enjoy. And doing activities that you enjoy, has actually been shown to improve not only your mood, but also your perceived energy levels and therefore decrease symptoms of fatigue.

28:53  Energy conservation strategy training:  So, energy conservation strategy training is a specific way that you can manage fatigue levels with activities that you need or want to do during the daytime. So, energy conservation is the deliberate planned management of your personal energy resources in order to prevent their depletion. So, if you used to have a million dollars in your energy bank, now you only have 100. But you still have to do X, Y and Z during the daytime. The goal is to empower you to be in charge of where you're spending your energy dollars. So, what is the most important to you, and how can you make sure that you're conserving energy from the things that aren't your top priorities? So, for the activities that you want to conserve energy from, the five P's of energy conservation are what you want to remember. So, planning and organizing, pacing, positioning, prioritizing and permission.

29:59   Planning and organizing. That could look like planning and structuring your day ahead of time so that you're alternating tasks that take lots of energy with those that take less energy. Also organizing ahead of time, so you don't have to rush. Because the act of rushing and being in that very fast-moving state actually burns energy a lot faster. Even if you're balancing it with a rest period, it still will burn more energy than just doing the same activity a little bit more slowly and not needing to take that rest break.

30:35   Pacing. Work at that moderate pace, don't rush, and stop to rest before you get tired. You never want to be hitting completely empty on your energy tank. Because then you'll have to rest and for every day of inactivity, it takes four more days of activity to get back up to your previous energy level. So, pace yourself, take those rest breaks.

31:01   Positioning. Sitting down to do activities, especially those activities that aren't the most important to you, like sit down to get dressed in the morning, or sit down while you're putting your makeup on or brushing your teeth or making your lunch. That uses 30% less energy. Working with your arms at or below shoulder level. So not reaching overhead. That takes 10% less energy. So, using the biggest muscles of your body is what takes up the most energy.

31:37   Use activity analysis to reduce fatigue:  Other keys for positioning could be doing that activity analysis. So, thinking about what the environment is, what the tools are, what are your body mechanics? What types of equipment could you position in certain places where you're doing your activities to help you out and use a little bit less energy for that task?

32:00  Prioritizing. Identify how your priorities might have shifted. So previously, if you were the one who is making everyone's lunch in the morning, and making dinner at night, and also going to work all day long. But what your top priority is, is spending quality time with your family. But you're realizing that if you do all of those things you used to do, you're not going to have any energy left by the time everyone's ready to spend time together in the evening. So, if that's your priority, how might you need to restructure your day, or give up some of those things that you were spending a lot of energy on, if they're not your top most important?

32:48   Permission. The letting go of the need to fulfill societal obligations. So, things that aren't the most important to you, but you're still doing because you feel like you need to do them, how can you let go of a few of those things?

33:15  Using a fatigue tracker to improve energy:  So, a fatigue tracker. This is your tool to help you think like an occupational therapist. So, you can take this and run with it if it is a helpful tool for you. The premise of it is writing down what the activity is that you're doing, what your fatigue level is after doing it, and then just jotting down some activities, ideas to improve the energy.

So, this person is taking a shower first thing in the morning. And some ideas that they had for themselves were using a shower chair, moving the shower to the end of the day before sleep when it doesn't matter quite as much that you're using up all your energy because you're going to bed anyways. Making breakfast, they're already up to a seven out of 10 fatigue level and it's only 8:30 in the morning. But then they go out to meet a friend for coffee and their fatigue level decreases. "Oh hey, my fatigue decreases after I do something that I enjoy doing. Schedule this more often."

34:21  Using adaptive equipment to conserve energy:  So, a few specific adaptive equipment ideas that may or may not be helpful to you. But I want you to think about why these are helpful resources. So, these are things that I recommend frequently to my patients with GVHD, but think about what problem they're solving and how you can use the concepts of that to decide which of these or which other pieces of adaptive equipment might be helpful to you.

34:49  Compression stocking donners:  So, the first one here is... Well, both of them are compression stocking Donners. So, the first one is called the Jomi compression stocking donner J-O-M-I. And I like this one because it has adjustable length of handles. So, if you're having difficulty reaching to your feet, you can adjust the length of it to the length that you need. Another important thing about this one is that it's made of metal versus some of the plastic ones that are made for regular socks, those will be compressed by a compression stocking and won't be useful. So, you need one that is rigid enough.

And the second one is the Jobst Slippie Gator. The brand is J-O-B-S-T. And this one, you put the little parachute type device into the stocking. And then you kick your heel on that green mat to help slide the stocking up onto your foot. So, you don't need to pull quite as much with your arms for this one. But if you have neuropathy of your feet, for example, this one isn't quite as safe and I wouldn't recommend i, because if you have lack of sensation in the heel, you might be kicking too hard and not realize it.

36:10  Reachers and grabbers:  Some other pieces of adaptive equipment, reacher or grabber. You can get various lengths with different features. So, think of what it is that you're wanting to pick up. If you have a longer device, you're going to need more grip strength to hold it because it's further away from your body. So, if you can get away with a shorter grabber that'll give you better leverage.

36:36  The multi opener, this helps to open water bottles, soda cans, pull tabs on cans, things like that.

36:49   The FreedomWand. This one, it was originally designed to help people extend their reach with cleaning themselves after going to the bathroom. But I really like it for applying ointment or creams especially to the back. If you have a topical steroid for skin GVHD, for example, you can grab a little cosmetic sponge in the grabber and put whatever ointment it is on and reach wherever you need to reach in between your toes, behind your back or et cetera. And then you can dispose of that cotton sponge versus some of the other lotion applicators you reuse the same surface multiple times which isn't sanitary to do multiple times.

37:36   Sun Protection Clothing:  And another one is SPF clothing. So, they have some really cute designs. Now this one is Coolibar it's called. But if you need to protect your skin from the sun's rays, you can do so in style with a lot of different options on the market nowadays.

37:58  Lifestyle redesign to improve health and quality of life:  Okay, so lifestyle redesign. This is a specific type of occupational therapy and intervention that guides patients through the process of creating habits and routines that are personally meaningful, and health promoting. So, it's based on the premise that by doing things that are meaningful, purposeful, that matter to you, you can actually influence your physical, mental, cognitive, and emotional health and well-being.

Moving on to the conceptual model here. So, the intervention in the original study that examined its effectiveness was based on this conceptual model that the intervention would lead to improved healthy activities. So, frequency, meaning of the activity, improved active coping, so being proactive in developing a plan to overcome obstacles, not withdrawing, and becoming depressed, improve social support, perceived control, feeling capable, feeling like you can take control and command of your life.

39:11  Reinterpreting disappointing circumstances in a positive way:  And positive reinterpretation-based coping. So, where you reinterpret your current circumstance in a positive way. So, for example, if you can't drink alcohol because it interferes with one of the medications you're taking, instead of being upset about this, you might think, "Well, I'm happy to not be drinking alcohol because when I drink, I can't be fully present with my partner or my children. And that's more important to me than having a glass of wine." So, the conceptual model was that all of these things would ultimately result in improved perceived physical health, psychosocial well-being, cognitive functioning, and reduce stress related biomarkers, which they did find to be true.

39:54   Identifying barriers to health-promoting activities:  How this looks is analyzing activity patterns, reflecting on whether the patterns are health promoting or not, and identifying barriers to doing health promoting activities. Then options and alternatives, the activity that might not be available to you anymore. And then creating personalized healthy activity options and plans. So, each person develops a personalized health engagement plan, which is basically their prescription for daily living, and it details the concrete steps, their specific goals and how they're going to achieve those goals.

The mechanism for change for this is, first you learn the information, internalize the information. So, you feel... Identify yourself as someone who's capable of changing behaviors, because you're going to try things, little by little, find success with them, and then be motivated to try more. And then that, in turn, leads to ultimate habit formation and long term change.

41:22  Behavioral activation focuses on changing what you do to change the way you feel:  So, the last intervention and strategy I want to show you here is behavioral activation. This is a form of cognitive behavioral therapy. But where some approaches focus on changing the way you think in order to change the way you feel, behavioral activation focuses on changing what you do in order to change the way you feel.

So, thinking of how this cycle might look for someone who's gone through a stem cell transplant or has GVHD, there are more negative experiences. So, for example, having a new diagnosis, your treatment plan, side effects from your treatment, more time spent at the hospital. And then you also have less positive experiences. So, you're not doing as many leisure activities that you enjoy, you're not able to participate in social activities as much, you're not able to fulfill your responsibilities as an employee, a parent, a friend, as much as you would like to.

42:27  Reducing tendency to feel depressed and withdraw:  Then those combine to naturally produce feelings characteristic of depression. That's a normal human response to that. However, once you start feeling depressed, a natural tendency is to withdraw from valued activities, because you don't feel like doing them. Feel like, I'm probably a bummer to be around anyways right now, what's the point, I'm not going to enjoy it, things like that. And then the more you withdraw, the more the fruit of it, that sense of meaning and purpose in life decreases, which leads to feeling even worse. So, you get stuck in that cycle on the upper right hand side of the slide there.

Behavioral activation is the way to break out of that cycle. So, you create a schedule for yourself that incorporates meaningful and rewarding activities, that are gradually more difficult, to increase positive reinforcement. So, you're going to start doing activities. Even if you don't feel like doing them at the time, you're going to create the schedule for yourself. And as you begin doing them, you start to feel better. And research has shown that this intervention is actually as effective as antidepressant medication at decreasing depressive symptoms.

43:45  Behavioral activation begins by creating and activity schedule:  So how this might look or something that we might do with our patients would be creating an activity schedule. So, create your aims for the week. For example, this person wants to do their home exercise program two times this week, because that helps fulfill their need for physical activity, and they feel good after they do it. Calling three friends or family members this week for that social connection. And then helping to cook dinner three nights a week because they really enjoy cooking and want to resume that meaningful role within their family dynamic.

So once the patient has created their aims for the week, then they fill it out in their weekly schedule. So, they have the three people that they're calling, calling their brother, calling their friend, and so on and so forth. Filling in what day and relatively morning, afternoon, evening when they're going to do it. And then as they go through the week, they check off whether they did or didn't do what they intended to do.

So, they called their brothers, they put a checkmark, they cooked dinner, so they put a checkmark. And then overall mood, fatigue, symptoms, and thoughts throughout the day. So, they felt quite relaxed that day, and the next day they were intending to call a friend, but their friend invited them to lunch instead. And they felt very good about that.

Instead of doing their home exercise program, they worked. But they're still feeling hopeful that evening. The next day, they didn't cook dinner as they wanted to and were feeling upset all day, lots of pain. So, when you reflect on this whole week and how the activity schedule went, you can use that information to create a schedule for the next week. And like I said, the goal is to gradually increase the difficulty level of each of the activities that you're doing, but all of them should be things that are rewarding for you, things that you're going to enjoy or get some sort of meaning from.

So, I hope that some of those strategies have been helpful for you. And I'm happy to answer any questions if anyone has them about anything we've gone over.

Question and Answer Session:

46:08  [Moderator] Thank you, Carly. That was a great presentation. I know we've had a few comments chatted in, that it really did resonate with folks who have been listening. So, thank you for that. We do have a few questions. And I will read those to you, and you can answer them as you are able.

Can GVHD cause muscle weakness?  The first one is from Cheryl, she wants to know whether GVHD can cause muscle weakness, especially in the legs?

46:35  [Ms. Cappozzo] So the GVHD itself doesn't necessarily cause the muscle weakness in my experience. Typically, the main culprit for the muscle weakness is both the systemic steroids like prednisone, one of the side effects of that is muscle weakness, especially of the hips and the legs. And also, just deconditioning from not doing as much activity due to fatigue and other things like that.

47:05   [Moderator] All right. Then Scott wanted to know can the body eventually adjust to chronic GVHD such that functionality and life improves, including fatigue and strength?

47:18   [Ms. Cappozzo]  I would say the person can adjust to GVHD. So, it isn't even necessarily about the body itself adjusting. I would say it's more about a person learning to live with GVHD in a way that they're still able to do what they need and want to do. They're able to manage any symptoms or side effects that they're having. And the symptoms aren't getting in the way of their day-to-day life as much.

47:49  [Moderator]  How do you find an occupational therapist familiar with GVHD?  Alright, the next person wanted to know if there is not a GVHD clinic where they had their transplant and they want to reach out to an occupational therapist for help, how do they go about figuring out who's the appropriate OT to reach out to?

48:07   [Ms. Cappozzo] Yeah, so there's a lot of different options for that. The referral always has to come from a physician. So, talk to your physician, and they may or may not have a recommendation of an occupational therapist who works within that hospital or health system. They could be home health occupational therapists who work in outpatient settings or in hospitals. But if you're residing in the community in a home, you're likely going to either have home health OT or outpatient OT. Looking for one that has some experience or expertise in addressing cancer-related impairments or GVHD related impairments would be really helpful. If you're interested in the lifestyle redesign, in particular, that intervention was started through USC. And I believe you can contact them, and they do over the phone and virtual visits with their occupational therapists who are trained in lifestyle redesign.

49:25   [Moderator] Well that's a good segue into the next question is, are you able to do occupational therapy online due to COVID?

49:34   [Ms. Cappozzo] Yes, however, that is different for each state. So, my understanding right now is that the majority of states have kind of been - Medicare in particular, and most other health insurances follow what Medicare does - they're allowing all therapies to be conducted online if necessary or desired due to COVID. And we're hoping and there's been some advocacy within occupational and physical therapy to keep that option in the future. But each state has its own rules and regulations.

So, for example, me being in Texas, I can only do online telehealth OT with patients who are physically located in the state of Texas at the time of the video visit. So, I would have to be licensed in a different state in order to treat a patient who's residing in a different state. But yes, there are some facilities that are able to do online or virtual visits.

50:50   [Moderator] All right. The next person wants to know how successful is vaginal stretching? She says that intercourse is impossible at this time with GVHD, and she's almost a year out of her transplant.

51:03   [Ms. Cappozzo]  Mm-hmm  affirmative). That's a great question. And at our facility in particular, we have physical therapists who do our pelvic floor therapy. And they have worked with several patients with chronic GVHD. And my understanding is that as long as the vaginal canal isn't completely adhesed or closed, they are able to do stretching, manual therapies, and use a dilator or other devices to stretch out that tissue. But it also would be good to collaborate with the gynecologist or dermatologist to see if there's other things that would be helpful to have onboard like a topical cream or an ointment or something to make sure that you're not damaging the tissues. So yes, that is an option. And it is something that is done by physical or occupational therapists in collaboration with the rest of the team.

52:07   [Moderator] How to manage breathing difficulties:  Okay. This individual says that they have chronic GVHD. "I walk nearly two miles outside each day. However, I have great difficulty breathing, especially cooking dinner or showering. Do you have any suggestions?"

52:26   [Ms. Cappozzo] Yeah, so one of the things I would take a look at is, why are they having the difficulty breathing? And is it due to GVHD of the lungs or is it due to the skin?

So sometimes the skin on the abdomen will be really tight, and you can't expand your lungs fully because of that. Or it could be that it's the GVHD of the lungs, and that there's something going on internally with the exchange of oxygen, and that's why they're feeling short of breath. So, a lot of times, as part of the typical workup for that, patients will get a pulmonary function test, and their pulmonologist or their stem cell physician can tell them whether it's the lungs that are the issue, or the skin that's the issue. But regardless of what the cause is, it might be that adjusting the positioning while you're doing the activities or pacing the activity, or incorporating diaphragmatic breathing while doing the activity rather than rushing through it and then gasping for air at the end would be a helpful strategy, but that's something that I would definitely encourage that person to go see a physical and or occupational therapist to work through some strategies that are helpful to them with managing the shortness of breath.

53:53   [Moderator]  Suggestions to repair brittle nails caused by GVHD:  Thanks. The next person has a question about brittle nails. She said, "My partner has GVHD, and his fingernails are thick and thin and broken and get caught and rip. What suggestions do you have for possible repair of the nails?"

54:10   [Ms. Cappozzo]  So, our dermatologist that I work with, has done, I'm not sure exactly what the injection is, but I know that she's recommended to patients in the past that there's a specific type of injection that she can do into the nail bed that sometimes is effective for that. So, I'd inquire to the stem cell doctor and or if there's a dermatologist on board, if that's an option that they offer. Otherwise, I would focus on ways to protect the fingernails. So, see if they would tolerate putting little caps on the fingers to prevent it from breaking or putting tape over it. And again, all that would be discussed with the primary team to see if there's any contraindications to any of that or any reasons why you shouldn't do that. But check about the dermatologist with injections under the nails or protecting the fingernails.

55:16   [Moderator] What can be done for fasciitis?  Alright, our next questioner wants to know more about fasciitis, she says she's been diagnosed with it, and it's really affecting the quality of her life. Is there anything that can be done for that? Maybe you want to explain what fasciitis is for those who don't know.

55:32   [Ms. Cappozzo] Yeah, so that's something that I see quite frequently and can lead to a lot of contractures, or loss of range of motion. It's tightness of not the skin, but that layer that's between the skin and the muscle, and kind of an odd thing to think about. But if you buy meat at the meat counter, the white stuff that's on top of it, that's fascia. So, it's like a web like structure that goes throughout your entire body. And there's different planes that it moves within, but it connects all the structures together underneath the skin. So, fasciitis is a tightness of that. And that can lead to the difficulty with mobility.

So, there's a lot of different ways that it can be managed, stretching is the biggest one. Myofascial release, which is a specific type of massage can also be helpful for releasing it. If the fasciitis has progressed to the point that there are joint contractures or loss of range of motion, the most effective strategy for improving range of motion would be serial and progressive splinting and casting. So that's one of the things that I do with patients at MD Anderson, is making a cast, like if you were to break an arm for example, it looks exactly like that. And have them in a good amount of stretch over the joint while you're putting on this cast. And then typically I'll cut it off in half, and then put straps around it so that they can put the device on and wear it for a prolonged period of time while they're not using their arm, for example.

So, wear it when they go to bed or when they're relaxing, watching TV to get that prolonged stretch. And then when that range of motion has improved, you can make a new one with more of a stretch until you get to full range of motion. But if it hasn't gotten to that point, the biggest thing is incorporating stretching into your day-to-day routines. And then the myofascial release, which is the specific type of massage.

57:57   [Moderator] All right, Jenna was not clear on what you had said earlier, you had said it takes four days of activity to recover after one day of what inactivity?

58:08   [Ms. Cappozzo] Right. Yes. So, after one day of inactivity, it takes four days of activity to get back to your previous energy level. So, think about after you have the flu, for example, and you're laying down in bed for two days, it usually takes a week or so until you feel back up to your previous energy levels, you just kind of feel a little sluggish for that period of time. So that's exactly the same with cancer-related fatigue.

58:43  [Moderator] Doing physical activities in the COVID era:  All right, we have another question about strategies for doing all of these things in the COVID era. And she says, where this person lives, they can't even go out for a walk. So how do you get together with friends? Or how do you do some of these physical activities that you might have done easily when there wasn't COVID around?

59:05   [Ms. Cappozzo] Yeah, that is unfortunately a big struggle for a lot of people, pretty much everyone right now. And I acknowledge how challenging it can be. And I'd encourage you to think about that activity analysis. So how can you change the activity, so it'll look a little bit different than it did before, but you're still getting what you want to out of the activity? So, if walking is what you're thinking of, are there places that you could go walk where there aren't any other people around? Or could you go during times of the day when other people wouldn't be out walking there?

Are there virtual options for doing fitness classes or something like that, if that's what you're interested in doing? Could you connect and do a happy hour over Zoom with your friends? Really look at that activity analysis and how you can adapt the activity to fit within precautions that you need to take to keep yourself safe. And in my experience, my patients who have gone through the stem cell transplant process, are actually better at coming up with ideas and strategies for this than most other people because of their experience of being immunocompromised for so long. So, ask some of those other communities of patients who are going through similar experiences, and I found them to have a lot of really, really great suggestions and ideas.

01:00:45    [Moderator] Deep tissue massage machines for the home:  Great. So, the last question is, this person has seen advertisements for deep tissue massage machines for $100 or more. She wants to know, are those something that are useful, or are those something that really you should steer away from?

01:01:07   [Ms. Cappozzo] I haven't seen any research to suggest whether that would be effective or not. And I'm assuming because it's something that is relatively new on the market. So, I honestly can't say for sure whether it would be effective or not. But it's trial and error a lot of times, so ask your physician if there's any reason why they don't want you using something like that and try it and see what the results are for you. Because a lot of times, you can't really predict how someone is individually going to respond to a certain therapy or strategy, then with the medical management of GVHD often the physicians will try one medication and say, "It doesn't seem like this one is working for you. Let's go to a different one."

01:01:55  [Moderator] Alrighty. And actually, there's one more question I'll ask it. A person from San Antonio wants to know whether people from San Antonio can be treated at your facility in the occupational program.

01:02:11   [Ms. Cappozzo] Yeah, I don't think there's any restrictions for anyone to be seen there as long as their insurance covers it, and they have a referral.

01:02:20   [Moderator] Okay. Alright. And with that, I think we will bring it to a close. I think we've answered all the questions. And I want to thank you, Carly. That was a great presentation. We had a lot of good comments about that. And I also want to thank everybody who submitted questions. Those are great questions, made for a very interesting conversation after the presentation.

01:02:40   [Moderator] Before you leave, I want to ask you to please complete the very short exit survey that you'll see once you depart. This really does help us understand if this was helpful for you. And it will help us plan better events in the future, if you have some suggestions on how to do that. And then finally, please do not hesitate to call or email BMT InfoNet, if we can provide you with any additional information or help, that's why we're there. And on behalf of all of us at BMT InfoNet, I want to wish you a good night, be safe, be well and enjoy a good holiday. Thank you.