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Board Review Vascular

Quality of Life Issues for People with Lower Extremity Edema

Pamela Scarborough, CDE, CWS, DPT, MS, PT

Pamela Scarborough, CDE, CWS, DPT, MS, PT reviews the importance of psychosocial assessments in patients with chronic lower extremity edema. Dr Scarborough also reviews the impact on the patient and provider in regards to quality of life issues. She also reviews the physical barriers for the implementation of various treatment protocols and the various treatments available to circumvent obstacles presented. She concludes in providing tools and educational techniques for healthcare providers who do not specialize in lymphedema.

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Goals and Objectives
  1. Understanding the various quality of life issues and their impact on the patient and health care team
  2. Defining successful home management protocols and resources available for patients
  3. Appropriately assessing the physical challenges that may affect treatment protocols
  4. Managing lymphedema as a non-specialist
  5. Techniques for teaching patient home therapy management
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    Release Date: 03/16/2018 Expiration Date: 12/31/2018

  • Author
  • Pamela Scarborough, CDE, CWS, DPT, MS, PT

    Director of Public Policy and Education
    American Medical Technologies
    Irvine, CA

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  • Lecture Transcript
  • TAPE STARTS – [00:00]


    Female Speaker 1: Alright. So let's talk about quality of life for just a moment. I teach a course I called Wound Certification Prep Course and I always do the psychosocial part of it. And so the reason I get to do the psychosocial part is our physician said, no, I'm not a touchy, feely kind of dude, so I'm not going to do psychosocial. And my nurse that teaches with me being worst, she says I'll do it, but I really don’t know anything about psychosocial, which is not true. Everyone in this room knows about psychosocial. And I say, well, alright, I'll do it. I have a minor in my Bachelor's in Psychology. So that’s my disclaimer. That’s all I have got. Twelve hours. However, there are quality of life and psychosocial issues for everyone who has a chronic wound or any type of a chronic health issue. So when we think about this, there is a wonderful consensus document. So I want to mention this because I actually saw this in Jim's literature also, it's called Diagnosis and Treatment of Peripheral Lymphedema, a 2013 consensus document of the International Society of Lymphology and it's a wonderful consensus document. I would recommend all of you download this. It's a very easy download from the internet. And in this document, it talks about psychosocial support with a quality of life assessment and a quality of life improvement program should be an integral component of any lymphedema treatment program or venous insufficiency or chronic wound. Now, they're talking about lymphedema here, but I'm talking about any type of chronic wound needs to have some type of a psychosocial assessment. So some of the quality of life issues, Jim mentioned some of them. Of course, they're self issues, clothing and shoe challenges, depression, of course loss of control in life, anxiety, social isolation, dependency on the healthcare providers is a problem to control the swelling. Sometimes we do it fairly well. I'm sure Heather does it outstandingly, but other others are challenged and even finding the people and the supplies to help control the swelling. And then the difficulty or inability to find qualified healthcare providers to treat the lymphedema and that could be finding MLD therapist and finding MLD therapist that will even take an open wound can be a challenge. And also some of the associated conditions that are going on, such as the different types of infection that the person might have. Particularly challenging and distressing for the patients when you look at some of the articles has to do with the pain they have, the leaking exudates -- how many of you have seen the exudates that just truly leaks on the floor -- absolutely and they're very distressed by this, the odor. Jim mentioned the odor. Think about what happens with intimacy or socialization even when you are family or sleeping with your spouse and your spouse's leg smells and your spouse knows it. So they're going to sleep someplace else and that breaks down the entire intimacy of a couple and it can be very distressing for the couple. So it's not just the patient. It's the couple that is negatively impacted. The restricted mobility that goes along with swelling and the sleep disturbances that may have to do with the pain or the positioning that the person has to work with. Successful home management programs are challenging for our lymphedema patients. So implementing successful home maintenance program is often a source of frustrations for both the patient and healthcare provider, the caregiver or the therapist. We must consider the patient's physical and cognitive abilities, the level of family support and the assistance that this person might get, the financial implications. And we're talking about some of the financial implications in this course. Now, always ask families or the patients if they're willing to pay for something even though Medicare or their insurance may not pay for it. Please always ask them. Maybe, they'll say, you know I bet my son will get me one of those for my birthday present or for my Christmas present or whatever. So just because the person says I'm not going to pay, always ask a secondary question which is, is there any way that your family can come up with the financial resources to help you. And you'll be surprised with what you find some time when you frame it like that. So the financial implication as well as the patient's ability to learn, adapt and followthrough. We have to recognize this. How much of responsibility are they going to take? You can only do so much and then you are out. How much is the patient going to do for themselves? So there are physical challenges that are going to impair or impede the home program. They have to have range of motion. Not only do they have to have -- we need range of motion of our ankle, but maybe they need to have range of motion at their hip. Can they get to their foot?

    0:05:00

    Can they get to their leg? That’s not bad for somebody who is 65 years old. So you have to look at their strength. Can they position appropriately? Do they have the manual dexterity? And Heather has a great idea, just putting on rubber gloves, just dishwashing gloves makes a big difference for putting on some of the lower extremity compression devices. So lack of any of these are going to make the treatment difficult for that person to self administer and you want to think about this. Some patients experience deterioration in their quality of life and loss of their long-term treatment benefits when finish with their clinical interventions with the therapist or with the caregiver; it maybe you. Maybe -- really this program makes you think [Indecipherable] [0:05:45] change how you do your clinical practice and you get that person's swelling down and you help them, but then they don't have these other things in place for them to keep up with it and continue to do it on their own. Frequently, the patients return to the therapist or the caregiver due to some exacerbation of the symptoms following an inability to comply with the regime of their current home program, whatever that inability is and however it translates into a functional program for them. Pneumatic compression technology after complete decongestive therapy is good as long as you have gotten that body part as close to normal as possible because what I'm finding is a lot of people are trying to rely on the pneumatic compression pumps before that person has ever had anyone try to move the lymph fluid, the edema through the channels that have not been damaged. And as Heather has said that’s not going to give you the long-term outcome that you would like to have. And then your lifelong custom compression garments. There is, of course, the challenge with the donning and doffing that we talked about and the expenses. So healthcare professionals who deal with patients who have venous disease, lymphatic malformations or secondary lymphedema are uniquely positioned to help address the psychosocial issues and you do this by becoming familiar for this particular disease state, becoming familiar with the lymphatic system, approaching the patient with compassion. One of your best skills as a healthcare provider is your compassion for your patients. And I know sometimes we get burned out and sometimes we get aggravated if we feel like they're not doing what they need to do if they're not minding us. However, if you bring compassion to the table, I think that your patient knows this -- I know mine do. How many of you have cried with your patients? Anybody ever cried with your patients? Most of the women raise their hands. Alright, there you go. Guys you can cry with your patients too. So you want to have compassion for these people, understand the difficulties and frustrations that they may experience. I understand how frustrated you are, let's see if there is anything we can do about this as a team. Caregivers need to recognize that problem exist for patients, assess the patients for these problems and assist them in obtaining needed supports and services and I know it's hard in our current healthcare structure. Absolutely, it's all of us are dealing with the barriers. You can’t do this, you have to have open wound when you get your compression device, your permanent compression device, which is a ludicrous statement for the Federal Government to say. So Heather and Jim, audience, let's talk about managing lymphedema when you are not a lymphedema specialist. And what this woman is saying and here is the doctor going, oh god, I don't want to look at this and she is saying that’s phlebolymphedema. So now what are we going to do? After listening to this program, do you have any thoughts? Is anything going to change in your clinical practice for these people? We have one minute and then we are going to do our compression lab. Is there something that you want to say. After listening to the lectures today from 2 o'clock to 5:30, is there anything that you're considering changing in your clinical practice, anybody? Know who the manual lymphatic drainers are. Alright. So is there a list of where they are, Heather? Okay. Yes.

    Female Speaker 2: It is a couple of things because I want to give you some tips to take back. A great website is from the National Lymphedema Network. So it's lymphnet.org. There is a search in there where you can put in your zip code or your geographic location and it will list all of the certified lymphedema therapists in your geographic area. So again that’s lymphnet.org.

    0:09:58.6

    And then for some of you too, I know because it's hard to get certified and you don't want to get certified and that’s fine, but there are basic things you can do to help your patients where it will support reduction. One of them is teaching them that diaphragmatic breathing, the belly breathing. Have them put a hand on their chest and hand on their belly and tell them to make that lower hand move, that’s diaphragmatic breathing. Some patients get it more than others, but some struggle with it. So tell them to blow up a balloon with their abdomen whatever it is that will work to teach that patient how to diaphragmatic breathe because again that's stimulating the largest thoracic vessel, the thoracic duct -- the largest lymphatic vessel and you can really mobilize a lot of fluid that way. Reminder; patients while they're decongesting, they will have to go to the bathroom a lot, but that’s a good sign. Okay, that’s a good sign. There is nothing to worry about. It just means they're mobilizing the fluid and they're getting rid of it, but they shouldn't restrict their fluid intake or their protein intake. If anything they should restrict, it's salt, which goes without saying. Okay. So couple of things that you can do to teach your patients and you can practice this right now. One of them is called priming the pump. So remember the venous angles, they dump in right here, right at the clavicle level. You can teach your patients how to do this. You can take the pads of your fingers. You can do it on both sides right at your clavicle and kind of just circulary go and pump it in. It's called priming the pump. So you do it ten times. It's not something you're trying to hook your fingers over that clavicle. You just do that ten times, you are priming the pump. You are telling that system we got to work faster, we got to work more efficiently. You can do it one side, you can do both sides at the same time. I can't because I'm holding the mic. But it looks like this. Pumping. You know you go in, you try to hook your fingers around the clavicle a little bit. You might need to cut your nails. [LAUGHING] That’s called priming the pumps. Another thing you can teach your patients to do is stimulate their nodes. So if it's upper extremity, you want them stimulating their axillary nodes. If it's lower extremity, their inguinal nodes. Are you familiar with the stress balls? Okay. Have them get a stress ball, put it in their axilla and have them pump. That will stimulate their nodes. It's sometimes easier than telling them to put their hand in there and do deep circles. Sometimes patients don’t get that. Okay, so put a stress ball in there and have them just pump, kind of like when you were kid and you tried to make those inappropriate sounds [LAUGHING]. My boys love that. But you can put a stress ball in there and that will stimulate those nodes and again by stimulating the nodes, you are priming the pumps. For the groin, you have them put the ball here and just bend their knee. And they can do it sitting -- if they can't do it standing, they can do it sitting and just lift their leg a little bit, but have the ball in there right at that crease and that will stimulate those inguinal nodes. And then the other thing you can do is -- just a little -- the kind that -- not a tennis ball, that’s too big but those kinds you just kind of hold in your hand, yeah little stress balls, they work great. So basically teaching them the diaphragmatic breathing first, teaching them to prime the pumps, stimulating that terminus and then doing pumping at the nodes will really make a big difference for them. You know if they did it, I would say ten times. They can do it three to four times a day. It's not a lot, but the more they can do diaphragmatic breathing throughout the day or if they're watching television, say every commercial break. So little bits, little chunks, just chunk it. So if you want to say something, it's ten times each. Yes, actually same thing. It's still the same thing because remember the whole system works off as suction. And what's amazing when you get certified is you learn -- so somebody has, say, a blockage in the lower extremity or maybe both lower extremities are blocked, you can re-route that fluid up to the axillary nodes. This is amazing how this system works. So that’s why the physiology and the anatomy comes into play. And sometimes in the more complex patients, you want to refer them to somebody who is certified, who appreciates and knows how to re-route it through those really challenging construction zones or traffic accidents, but doing these basic things of diaphragmatic breathing, priming the pumps, the terminus stimulation and stimulating those nodes, you will start to see a reduction in the edema. And then you complement that with the compression and you complement it with skin care and the like, but it can make a big difference for patients. Again that site is the NLN site and it's lymphnet.org and you can find -- they're out there. We need more people that are certified.

    Female Speaker 1: When they're doing their manual -- if they have not done manual lymphatic drainage before, they may say, well, I'm salivating a lot, I'm salivating a lot. Have your patients ever told you that Heather? Heather, have your patients ever said I'm salivating a lot when they start -- you start moving some of that fluid and -- oh, they have to go. It could be either one of those. But I've had some of my patients say, I'm salivating a lot. I never salivate -- it's like I'm smelling good food. Yes. Alright, let's see. So here is our summary. Lymphedema may be uncomplicated or complex, but it should not be neglected under or incorrectly treated. Accurate diagnosis and effective therapy is available and that’s what we've been trying to give you today. Lymphology itself is now recognized as an important specialty. Clinicians should be carefully trained in the intricacies of the lymphatic system, lymph circulation and related disorders. Especially those of us who consider ourselves to be wound specialists, we need to understand this. We have an emerging era of molecular lymphology that should result in improved understanding, evaluation and treatment of lymphatic-related disorders. And we have already talked about this. One of the things that Heather and I were talking about earlier, is there a lymphedema treatment act and if you're having a lot of these, go to this website to see about endorsing this particular bill. So that’s something to think about which sure could do some help.