The Effects of Aqua Lymphatic Therapy on Arm Disability, Quality of Life and Pain in Women with Chronic Breast Cancer Related Lymphedema

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1 Page 1 Dr. Andrea Cheville: Hello, and welcome to the Association of Academic Physiatrists podcast, featuring American Journal of PM&R article, The Effects of Aqua Lymphatic Therapy on Arm Disability, Quality of Life and Pain in Women with Chronic Breast Cancer Related Lymphedema. Today s podcast will include a Q&A with author Marie-Eve Letellier, Master of Science, from the School of Physical and Occupational Therapy at McGill University in Montreal, Canada. I am Dr. Andrea Cheville, an associate professor of Physical Medicine and Rehabilitation at the Mayo Clinic in Rochester, Minnesota, and I will be hosting this 15-minute podcast. Welcome to the program, Ms. Letellier. Let s get started. I, for one, was very excited to read your article, and I think it might be helpful for our listeners and prospective readers to talk about, why aqua lymphatic therapy? Why do we think that water therapy might be helpful in treating lymphedema? Marie-Eve Letellier: Aqua lymphatic therapy use the anatomic principles of the lymphatic system, and we use the water properties. So, one of them is buoyancy, which is the force that is brings the shoulder upwards, for example, and just ease the movement. So, particularly with women that have shoulder issues, they can just lift their arm, as compared on land, and there is no gravity, and just easy to do the movement. And the viscosity of the water also add a little bit of resistance. So, it just helping, and does a massage on the arm, if you want. And the (sounds like: intralymphatic) pressure gradually increase.

2 Page 2 So, for example, when we wear a compression garment the pressure is about 20, 30 in the sleeve; and when we put the arm down with shoulder fully immersed, the pressure around the wrist is about 44, which is higher than the compression garment, and we don t feel it. So, participant are really enjoying it, and they feel that they can have a lot of fun, and they don t feel the work, but it does work a lot on their lymphatic system. Dr. Andrea Cheville: As I was thinking about this, lymphedema s unfortunately a chronic, lifelong condition, and many of our patients transit through multiple phases with different treatment agendas. And sometimes we re treating to prevent lymphedema, sometimes to reduce the size of an arm, and other times to maintain it. Based on your experience with this study, where do you think that aqua lymphatic therapy might be most useful in the trajectory or continuum of lymphedema treatment? Marie-Eve Letellier: In my point of view, it can be used at any time. In prevention, women will just have their lymphatic flow improve, and they ll learn some exercise and they ll be able to maintain. In the intensive phase of the treatment, it can serve as and complement. So, let s say, for example, that women will do a CDT during the week, but we can combine and have one class. So, we do the class, and then take the shower, and we apply the bandages after, or we can in an ideal world we could combine {laughter} and do that every day, but sometimes it s not possible. And also, in the maintenance phase, they can keep the remedial exercises once a week and maintain really well their arm. But I think, also, what is a good part of this is, they learn a series of exercises and they can become autonomous in their lymphedema management. So, whenever they feel that they re they have an increase, they can just jump in the water; or, let s say

3 Page 3 they go for a holiday close to the beach, and they just go to swim and enjoy the water, and help their lymphedema. So, I think it could be at any stage, but mainly also in the maintenance phase is really important. And it gives them another tool just to be more efficient in their management of lymphedema. Dr. Andrea Cheville: You know, and certainly that would be of tremendous value. Lymphedema treatment remains largely manual lymphatic drainage and bandaging, and it can really be burdensome, both with the assistance of a therapist but also on your own. And I m really curious as to kind of the qualitative experiences of the participants as they went through this. Getting in the water is kind of fun, in contrast to so many other things we do to treat lymphedema. And perhaps there was something of a group spirit that emerged during the course of classes. So, I m really curious as to your perspective on the experience of the participants. Marie-Eve Letellier: I would say it s magical in the water. It and I can let s say, when we did this study, the first four weeks were good for me, because I was able to give all the instruction regarding the exercises that will be done throughout the weeks. But after the fourth weeks, it was hilarious. People just started to chat in the course. And it s like, Oh, I have this. Oh, me too. I have that. And it was unbelievable, the spirit that came out of the group. So, they were like, Oh. I m not alone in that situation any more. And other have experienced this, and that. And they were like, Oh, wow. So, they were quite pleased.

4 Page 4 And we did run a qualitative study one year after this project, and some calls are like, it was good to get together with other women, and the social element of the pool exercise is important, and they could share experiences. And they loved the classes, and they would like to attend if there would be more available. And also, they say that it was good for relaxation. And another component that came out is that and instead of doing manual lymphatic drainage every month, they were just jumping in the pool, and they could do their own therapy. So, that component was really good. Even one year later, they were still quite pleased about what they did in the pool. Dr. Andrea Cheville: That kind of touches on a very important theme in really all of cancer survivorship exercise research, and that s one of adherence. Once an intervention has stopped, with all the support, all the encouragement and direction, what we ve often found is that patients adherence, or survivors adherence to an intervention diminishes, sometimes quite quickly. And I m intrigued that the women felt able to and did, it sounds like continue to get in the pool. Was there anything you did in the intervention that targeted patient empowerment to encourage them to continue these behaviors after the cessation of the intervention? Marie-Eve Letellier: Well, every class I did, I measured them before the class started and at the end of the class with a volumeter. So, every single class, they were seeing the results that, hey, it went down so and during the class that I did. So, they were quite encouraged by that. And also, we gave them the handout of the exercises with a description of every single exercise so they can do, later on, the exercises on their own. And they were encouraged also to meet with the participant in the class to do another session during the week. From what I remember, they did not do that {laughter}; but most of them were able to do it later on in their pool. And

5 Page 5 they had those tools. So, they were I wasn t saying, Okay, please, if you can come and do another session, that would be good. But I give them also the exercises, and they were pleased, because, Oh, will I get the exercises? What do I know? How do I remember all what to do? And they were following the sheets and the description, and they were able to maintain and do that on their own, after. Dr. Andrea Cheville: Sometimes we recruit a sample into a study and there may be, you know, 10% of the patients that we screen, and they re not really representative. Just anecdotally as a clinician, I ve found that some people are thrilled about getting in a pool, and some people would rather do almost anything else. So, I m curious how was the screening and recruiting procedure for this study? Was it pretty easy to get patients? Were most people approached interested, or was it a tough sell? Marie-Eve Letellier: I would say it was maybe not the best way to recruit, that we did. So, we sent letters to clinics. So, the lymphedema clinic at the McGill University, and one from private clinic. And we sent, like, a total of 360 letters. And we only had 11% response rate. Which is not a lot. But I think one of the thing, also, with lymphedema, and getting into a pool, which maybe sometimes complicated to get involved in that type of study, is the body appearance. So, it plays a lot to say that these women like, you need to get into a bathing suit. So, other people will see your arm. So, the arms, they didn t not really bothered much; but some that were that we talked, and were interested by the project, but they were like, oh, I will need to wear a prosthesis. I don t have a water prosthesis, or so, that was sometimes limiting in our recruitment. Women were like, Oh.

6 Page 6 The body image aspect was harder to recruit as compared if was just do, let s say, a study on manual lymphatic drainage. So, that would have probably been easier, because you are one-on-one with a therapist; and this, you need to go to a public pool, because the setting it was done in three public pools are in the Greater Montreal area. So, women were like, Oh, okay. I might reconsider. But the participant that came they were really pleased to come (inaudible). Dr. Andrea Cheville: Do you think that the intervention helped with body image? Lymphedema after breast cancer s kind of a cruel thing, because women are trying to make a peace with an altered they may have had a mastectomy, maybe with or without a reconstruction, and trying to make peace with a new body. And then your arm swells {laughter}, and it s another undesired body change that you have to come to accept. Do you think being with other women, and through the intervention, it facilitated that process of body image acceptance and comfort? Marie-Eve Letellier: I would say so. There was one participant made us laugh a lot. So, you know women usually are really quiet about their prosthesis, and they don t want anybody else to know that they do have a prosthesis. So, being in the water in the pool wasn t too bad. It was in the changing room that was more problematic. So, you had other people, not involved in the class. But there was this lady in the class doing her exercises and jumping a little bit around, and the prosthesis just came out a little bit. And instead of being quiet and put it back in her bathing suit, she just went all (inaudible), Oh, my God! My prosthesis is out! {Laughter}. And put it back into her bathing suit. So, everybody was aware, in the pool, that, okay, we re doing a class, and she had breast cancer {laughter}. So, I think that changed a lot and women just started laughing and like, okay. Don t be quiet about it. We had that. And

7 Page 7 now we re doing things to help ourselves, and be able to live better with our lymphedema (inaudible) Dr. Andrea Cheville: That s wonderful, when you have somebody who is comfortable enough to defuse what can be a tense and (inaudible) situation. Marie-Eve Letellier: In all the ten years I give that class, this only happened once {laughter}. Dr. Andrea Cheville: Oh, goodness. Marie-Eve Letellier: {Laughter}. But most of the participant in the research were quite good, and they laughed. And it s like, okay, we re good, and we can discuss about that. Dr. Andrea Cheville: So often we fixate in lymphedema on arm volume or limb volume. And in fact, Jane Armer s work has really taught us that we should take symptoms as or potentially more seriously than volume, because it may be a more accurate reflection of what is really occurring pathophysiologically in the arm. And so, were you pleased as the group of investigators, I think it s an exciting finding very exciting that pain was reduced among the intervention group. What was the response among the investigative team, to your findings? Marie-Eve Letellier: Well, the pain we saw that it was reduced mainly in the aqua lymphatic group. So, we saw that. Also, the disability of the arm, measured by the DASH questionnaire we saw that it improved also so, not the disability; so we had the after the intervention they were feeling better about that they were able to do more, and range of motion. It s not in the paper, but we did assess the range of motion as well.

8 Page 8 So, there s no statistically significant differences but we did see an improvement, a little bit, in the range of motion as well. So, you re right about the symptoms. We most of the time focused on, okay, volume reduction. And this is easy to manage, or because it s numbers, and we see, and it s really easy to measure and have an insight on that. But the patient s point of view, like more on the qualitative aspect we have to listen to those symptoms and say, okay, well, hey, my arm feel less heavy. So, for us it s a big improvement. So, I think we have to combine both when we do that type of research. So, yes, measuring the arm volume, because we want to know if we are efficient; but also, on the qualitative aspect, we need probably to record more about that. Okay, what happened? Yes, you have less pain. That s perfect. And pain is quite subjective, and it s really hard to measure or address. And so, we were quite pleased, for us, to find that, okay, pain went down mainly in the aqua lymphatic group. And the quality of life also, from the FACT-B questionnaire we saw that it improved only statistically significantly in the aqua lymphatic group. So, we were quite pleased on that. Dr. Andrea Cheville: Yes. It s a very exciting finding. And truly, I find that patients they re far more motivated to adhere to recommended maintenance practices if they re in pain if wearing a sleeve, if being adherent enhances their pain more so than enlargement of their limbs. So, hopefully this exciting study will be a stepping stone perhaps to a larger randomized, controlled trial. And whether you and your group, or perhaps another investigative team, wants to take that, is there any on pearls of wisdom you could communicate? Things that you learned from conducting this study, which is a major achievement, that might enhance the quality of a future study?

9 Page 9 Marie-Eve Letellier: One thing, the recruitment depending where you are in the world I would say if you are something that is warm, you won t have much issue recruiting people. In our study, I started recruitment in December. So, that wasn t {laughter} a good idea. And we started the pilot study the exercises in January. And in Montreal in January, you do have a lot of snow; a lot of minus 30 degrees. So {laughter}, the weather, I would say, played a lot against us. So, that s one thing. But, two, a pool that is convenient. So, if you do have some hospitals, sometimes, they do have a private pool. Which I think will really ease the recruitment, because you ll be alone and you can play with the water. So, we did it in three different pools. And the water temperature some morning, it was cold, so it was really hard to have the exercises. And other pool had a really narrow shallow end, and it was going down quite fast to the deep end. Dr. Andrea Cheville: Sure. Sure. Marie-Eve Letellier: So, having a pool that is suited for that would be good. But it can be done also in any pool. Also, we could probably do follow-ups, for example. So, all the letters that were sent, just to do follow-up and make sure that we recruit them, to give them more information or what we re going to do. I think it would be feasible to do yes, having better recruitment strategies, definitely, and now with Internet everybody has access to Internet or Facebook or stuff like that. Creating an event that will increase also the participant awareness. Like, oh, there s this I can do, and the and to recruit in the lymphedema clinic I think it s really the best place to start.

10 Page 10 And also, this was mainly done on the arm, but there s also leg lymphedema that we could address, and I think we could have really good results in a different clientele. Dr. Andrea Cheville: I would agree fully. Is there anything that we haven t touched on, that you think would be helpful for readers to know about the study? Or any commentary on how the study speaks to our understanding of lymphedema prevention and treatment, and how it adds to the literature? Marie-Eve Letellier: Well, I think this therapy should be seen as a complement. And anybody that liked to be in the water, should be something that they learn. It s simple. It s easy to do. It s fun, particularly when it s done in the group setting; but also it can be done individually, so they become autonomous in their lymphedema management. So, it s always hard to rely on a therapist. I don t know if where you are, if they have to pay; but here in Montreal, most of the services, it s the patient that has to pay. A few hospitals do offer lymphedema therapy. But on the other hand, the participants still have to pay in private to get that. So, if they could join and have those exercises, it s just a tool for them. They can be alone, and later on, it s like it s cheaper in their pocket because they know how to control, and they become autonomous. For me it s a big thing. I m a lymphedema therapist as well. I do the full CDT; but also, for me, doing this, it s really a supplement, and it s a great tool to have for them. And for me, you re a lot in the water. You re between four to eight participant. And it s just a lot of fun. Dr. Andrea Cheville: Yes. It certainly sounds like it was fun. Well, thank you so much, Ms. Letellier. On behalf of the Association of Academic Physiatrists, we would like to thank you for listening to this podcast. More information on podcasts

11 Page 11 and the American Journal of PM&R, including the journal ipad app, can be found on the AAP website at This concludes today s program. Thank you. THE END

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