Pathways. The Effectiveness of CDT. Canada s Lymphedema Magazine. Understanding cellulitis Advocacy tips for real results

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1 Canada s Lymphedema Magazine Pathways SPRING 2014 Empowering patients and professionals The Effectiveness of CDT Understanding cellulitis Advocacy tips for real results WHAT S INSIDE... Perometer tools I Personal perspective I Training standards I Ask the expert

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3 Editor s Message A window into the future After a long, cold and snowy Canadian winter I am excited to present the Spring 2014 issue of Pathways. As Editor, I am very proud of this magazine; it provides you with a high-quality window into what is currently happening in the world of lymphedema, as well as a view towards exceptional things that are yet to come. It is also a unique forum to present and discuss timely and controversial developments and points of view. I thank Dr. Ian Dayes for addressing feedback that arose from publication of his research study on the effectiveness of CDT in the Journal of Clinical Oncology. Chat forums were abuzz, and s flowed back and forth between various lymphedema interest groups. This is a very good indication that people are not accepting the status quo and change is on the way. We need more willing researchers to question, delve into and investigate all in the interest of what will be best for the lymphedema patient. One serious complication of lymphedema is a skin infection called cellulitis. I am grateful to Dr. Mieke Flour, a well-known international dermatologist within the lymphedema world, who took time out of her recent retirement to provide our readers with a comprehensive understanding of this infection, its relationship to lymphedema and some effective treatment options. Her article is a great tool for lymphedema therapists and patients to share with their primary care physicians. New technology continues to emerge and the Perometer is a measurement tool that is starting to be used by just a few Canadian hospitals. It is more accurate than traditional lymphedema measurement tools and saves time, so the health professional can spend more time with their patient, teaching them to manage their lymphedema. The story from Alberta might inspire you to fundraise with your local hospital to get this tool as well. March is Lymphedema Awareness month so it is appropriate that we provide an article on practical advocacy tools that you can implement on your own, within a support group or use to get involved with your local community. The advocacy efforts of provincial lymphedema associations have improved accessibility to lymphedema care in some of the provincial health care systems most recently in Alberta, Quebec, and Saskatchewan. One of my favourite sections is Personal Perspectives reading stories of people living with lymphedema and how they cope. Having lymphedema in one limb is hard enough but trying to manage swelling in the entire body is, as the author says an entirely different ball game. Thanks to Angela Connell-Fui for sharing her story and perhaps inspiring others to get involved in their local provincial lymphedema association. I also want to thank the advertisers for the part they play in the lymphedema community. Not only do you support Pathways with your financial support, but you also help provide the message of hope to patients by offering choices for innovative products and services for lymphedema management. You make it easier and more pleasant to manage lymphedema on a day to day basis. I am very proud of this magazine; it provides you with a high-quality window into what is currently happening in the world of lymphedema, as well as a view towards exceptional things that are yet to come. Lastly, I want to thank the wonderful Pathways Editorial Board. All of the current six Board members have not only graciously lent their time and expertise over the last two years and nine issues but all of them have recently volunteered to continue for yet another publication year. These experts play an important role sourcing material and contributors, reviewing, editing and approving all editorial and advertising copy. We certainly have some interesting and controversial conversations with various points of view at each teleconference meeting. Thanks to Dr. Anna Towers, Dr. David Keast, Dr. Winkle Kwan, Janice Yurick, Roanne Thomas and Lucette Wesley. I can t do it without your tremendous support. LP Anna Kennedy Spring 2014 Lymphedemapathways.ca 3

4 Contents Spring 2014 n Volume 3 Issue 2 Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board David Keast MD FCFP Winkle Kwan MD FRCPC Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada $25. International $50. Single copies and back issues $7. Subscriptions/return mail to Canadian Lymphedema Framework 4161 Dundas Street West, 1st Floor Toronto, Ontario M8X 1Y2 Telephone: canadalymph@live.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of M. Flour, Jobst, CLF SlideBank, A. Connell-Furi, Cross Canada Institute Canadian Publications Mail Agreement ISSN Printed in Canada A Conversation with Ian Dayes Dr. Anna Towers interviews Dr. Ian Dayes about the findings of his team s randomized controlled trial on the effectiveness of CDT, as reported in the Journal of Clinical Oncology.... Understanding Cellulitis A serious concern for lymphedema patients and those at risk A Dermatologist offers us an in-depth understanding of cellulitis, offering various strategies to alleviate symptoms Making Change Happen Advocacy tips for real results 13 Rigorous planning, strong relationship building and effective communication are the hallmarks of strategic advocacy.... The Quest to Live With Lymphedema and Not For Lymphedema Living with lymphedema definitely has its challenges. Having full body primary lymphedema and multiple chronic illnesses puts one into an entire different ball game.... Ask the Expert The importance of compression bandaging Research indicates that the compression component of lymphedema treatment has the largest effect on edema volume.... Training Standards for Lymphedema Therapists Consensus Statement This document supports the Canadian Lymphedema Framework s mission to improve the standards of lymphedema care in Canada Hockey Raises Funds for Measurement Tool The Perometer is a valid, reliable and sensitive method to quantify limb volume and as such is an ideal tool for both research and clinical applications Lymphedemapathways.ca Spring 2014

5 Interview A Conversation with Dr. Ian Dayes His research team s study on the effectiveness of CDT Dr. Anna Towers, Co-Chair of the Canadian Lymphedema Framework, chatted with Dr. Ian Dayes, who was kind enough to address many comments and questions received from the lymphedema community. Dr. Dayes, thank you for the randomized controlled trial on CDT that you and your team reported in the Journal of Clinical Oncology 1. We have collected feedback from the lymphedema community about the research report and we would be grateful if you could address these for us. Firstly, would you please briefly summarize the methods and results of your study? Thank you for the invitation. In our study, patients from six cancer centres across Canada were enrolled and were randomly allocated to receive 1) CDT with daily massage for four weeks and then to be fitted for elastic sleeve and glove or 2) to be fitted directly for sleeve and glove without receiving CDT. Arm volumes were calculated from measurements prior to, midway through and upon completion of the four weeks. Measurements were also taken during the year. The main comparison was the percent loss of excess fluid with quality of life and arm function questionnaires also included. After collecting data on 95 patients, we found that women in the CDT group lost 29% of their excess fluid, while those who went straight to using sleeves lost 22.6% of their fluid. Statistical analysis revealed that a difference of this size (6.4%) could easily be explained by chance alone, suggesting that there was not a significant treatment effect. This study follows on previous research on CDT. Would you please tell us why you decided to do your study, and how it builds on research previously done by others? In 2001, the Canadian Medical Association Journal published clinical practice guidelines for patients with lymphedema following treatment for breast cancer. These guidelines were released following a rigorous evaluation of the available medical literature. Despite being a commonly prescribed treatment, there was no strong support for CDT as the authors felt there was no good quality evidence for its use. In light of this lack of evidence, the authors concluded that conservative measures, such as elastic sleeves, should be recommended to patients. They also suggested that further research in Anna Towers, MD FCFP is the Clinical Director of the Lymphedema Program, McGill University Health Centre and Associate Professor, Departments of Family Medicine and Oncology, McGill University. She is also the Co-chair of the Canadian Lymphedema Framework. this area should be funded. As I was currently enrolled in my fellowship in health research methodology, I felt this was an opportune time to examine the question further. My own understanding of the available literature was that a few comparative studies were available but they provided no evidence that massage-based treatments were any better than simpler measures. In fact, one suggested that CDT might even be worse. At that time, only two studies were published that compared a massage-based treatment to some form of compression. Both were small studies that had little chance of proving superiority of either treatment due to their limited size. One study only gave patients one week of massage. The other provided massage, without bandaging, eight times over 2 weeks. It was clear to me that the massage treatments in both of these studies was hopelessly underutilized and that it was not surprising that the effect of the massage was nowhere near what could be expected from previous studies without a comparative group. In summary, the available trials had been poorly done and had not given CDT any reasonable chance of showing its potential benefit. This was the argument I made when requesting research funds. Photos: CanStockPhoto Spring 2014 Lymphedemapathways.ca 5

6 The resulting study, which we called DELTA, was different in several ways from previous studies. This allowed for higher scores on internationally accepted study quality checklists. 3 DELTA was much larger than previous trials. This greatly increased the chances that we could statistically detect a difference between the effects of the two treatments. 3 We followed our patients for a year, rather than just to the end of treatment. We felt LYMPHEDEMA DEPOT LTD ONLINE STORE that if CDT was to be funded, we would need to show good long-term benefit, since lymphedema is a chronic condition. 3 The CDT was much more standardized than in previous studies. Patients received daily massage and bandaging, 5 days a week for 4 weeks. They were also taught self-bandaging. Therapists had to be certified in either Vodder or Földi techniques. 3 DELTA was performed in 6 clinics across Quality Products for Chronic Edema & Wound Care Head to Toe Day & Night We ve Got You Covered. Find a Dealer, or Become a Dealer Call Us, We re Here to Help! Canada. In the medical literature, results from multiple centres are more believable than results from a single centre. 3 DELTA measured arm function and quality of life, two outcomes that are also important in addition to arm volumes. 3 Patient arm volumes were measured by people who did not know which treatment the patient had received. This is important in clinical studies. DELTA was the first study to do this. We had hoped patients would be very keen to join this study but accrual was slower than expected, which is often the case in clinical trials. We had expected that we would accrue 100 patients in 2-3 years, but it took 6 years, even though we later included patients with 10% arm volume differences, initially starting at a 20% minimum difference. Once the final analysis was done, there were only small differences in arm volumes between the two groups. These small differences were easily explained by chance and did not satisfy the scientific criteria to suggest that anything other than chance was responsible for those small differences, i.e. each of the treatments were just as good at reducing arm volumes. This can easily be seen in the graph shown (page 7). As well, there were no differences in quality of life or arm function. The results were disappointing as the hope was to show that CDT provided better control of lymphedema than elastic garments. However, another Canadian study from Edmonton which was published while DELTA was still running had suggested the same thing. It was also a better quality study than previous ones. Patients received daily CDT for 4 weeks. At the time, it was the largest similar study to be published although it was about half the size of DELTA. The results were virtually identical. While CDT patients in DELTA had 6.4% more volume loss than the other group, the difference in Edmonton was 6.9%. In both studies though, that difference is easily explained by chance alone and does not satisfy the standards that would be required of other treatments, such as drugs, to be funded. There was one interesting finding. While there was no difference in arm reductions overall, there appeared to be a trend suggesting 6 Lymphedemapathways.ca Spring 2014

7 Photo: CLF SlideBank better results with CDT in women who had experienced lymphedema for over a year. Our study was not designed to test this formally and would have required another 100 or so patients to make this finding statistically significant but it does allow for a starting point of a discussion about the role of CDT potentially breaking down long-standing fibrosis. That s only a hypothesis, but certainly an intriguing one. Based on the results of your study, there have been some articles in the popular press stating that CDT is no longer necessary for lymphedema management and that compression garments alone are sufficient. The implication is that all forms of lymphedema can be treated by compression garments alone. Given that the ILF consensus guidelines (2006) already recommend compression garments alone for the management of early mild lymphedema (i.e. 10% difference), what does your study add to the consensus? The results didn t suggest that the findings changed based on the degree of lymphedema, suggesting that compression garments alone would be a reasonable choice, even for women with moderate to severe lymphedema. However, a further analysis based on the duration of lymphedema suggested that women with long-standing lymphedema of over a year were more likely to get additional benefit from CDT than patients with lymphedema for less than one year. In your study there is no mention about the compliance of garment wear. Were patients wearing garments continuously (63 hours per week is mentioned but not defined specifically), day time only or night time also, which type of garment (flat or round knit) and were the garments from the same manufacturer? Compliance between the two groups was almost identical (63 vs. 64 hours per week), suggesting that there was no compliance bias between the two groups to account for the findings. Patients were typically asked to wear garments during waking hours, so 63 hours a week would translate into 9 hours each day. Garments were those used at each individual centre, so there was likely a mix of types and manufacturers as this was not specified in the protocol. In research terminology, why is garment use considered to be a more conservative approach compared to CDT? Typically in medical studies that compare treatments, the one which is less invasive, less expensive or less time-intensive would be considered the more conservative. Excess Arm Volume (0%) While there was no difference in arm reductions overall, there appeared to be a trend suggesting better results with CDT in women who had experienced lymphedema for over a year. We received this comment: a sleeve placed on an untreated (unreduced) arm and used on its own, will be ineffective if the arm reduces in size. If patients had reductions in arm volume which were felt to render the sleeve ineffective, those patients could be re-measured for additional sleeves. Additionally, if patients found their sleeves were too tight, they could be re-measured. A commentator wrote, Reducing the inclusion criteria from 20 to 10% difference in arm volume over the six year period of the trial may have raised doubts about the validity of the study. Could you please comment on why you did this and whether that might have impacted the results? CDT Control Time Since Random Allocation (weeks) No. at risk CDT Control Figure 2 Plot of mean percent excess arm volume (with 95% Cls) at each visit by treatment group. CDT, complex decongestive therapy. Spring 2014 Lymphedemapathways.ca 7

8 We found that many patients were not particularly interested in joining the study. As such, the time to accrue patients became much longer than expected. Even with the reduced criteria for entry, it took 6 years to get enough patients. We were very concerned that the overall reduction in volumes could impact the results. We analyzed the data based on the initial degree of lymphedema and found that this did not impact on our results. Results were similar whether or not patients had mild-moderate or severe lymphedema. Therefore we felt that including patients with 10-20% lymphedema likely had no impact on the findings. To what do you attribute the poor response to CDT (bandaging), as based on other articles- 29% reduction is much lower than what we would expect? Firstly, many articles examining CDT are based on data collected retrospectively. When physicians go back through their records and report on their patients, it is possible that patients who do not get much benefit from the treatment stop coming and are therefore lost to follow up. This means that reports of this nature tend to overestimate the true effect of the treatment. This is a well understood phenomenon when studying any type of treatment. Secondly, even with prospective studies, there may be many small influences on the success of a particular patient s response to treatment that can never be fully measured or understood. Because of this, it is always difficult to compare results across studies as it is difficult to show that the study groups were exactly the same. The previous two best done studies of CDT reported reductions of approximately 40% (McNeely, 2004) and 43% (Andersen, 2000), which is certainly higher than this study but not as high 50-60% as suggested by some retrospective studies. Of note, the McNeely clinic also enrolled patients on this study. In the article you write: We estimated that the mean percent reduction in excess arm volume between baseline and week 6 with garments alone would be 40%. Would you please explain the basis of this estimate? When performing a randomized study, estimates must be made to predict how many patients will be needed when drawing up a budget and applying for a grant. To do that, mathematical models are performed to calculate the sample size needed to give a reasonable chance of finding the difference you are looking for. Typically one needs to know the expected benefit of each of the two treatments that are going to be compared, as well as the amount of variability of the benefits within each group. When the study was initiated over a decade ago, we based our estimates on published data that was available at that time. Another comment: Response to treatment is expected to be poorer if the initial % volume is higher. Would this have an effect on the treatment results as the treatment group had higher volumes? This is answered, in part, in a previous question. I m not sure there s much value to giving the same reply. As an observation though, it is interesting that this question suggests that the study may not have shown a difference because the arm volumes were too large while a previous question suggests that same may be true because the arm volumes were too small. Would you comment please on how compressing a limb with only a garment might affect the outcome of a patient in relation to drainage of the adjacent quadrants, protein accumulation and potential fibrotic tissue accumulation in the affected limb? We did not make any measurements with regard to the above outcomes. As such, I m not sure I m qualified to comment. However, inherently I d expect a benefit on those measures with reduced arm volumes, regardless of how the volume was reduced. We received a comment regarding costs. Advocating the cost saving of approximately $1500 per patient, you suggest that there is little additional benefit from CDT. You place a cost per ml. of volume lost. However this cost saving must be weighed against long term disadvantages of lack of treatment. Are there not potential costs in patients who do not undergo CDT therapy? There were no patients on the study who experienced a lack of treatment. All patients had some form of treatment designed to reduce excess arm volumes. We followed patients for a year after treatments and did not find that there were additional costs. Of note, we did ask patients at each visit if they had undergone any additional treatments which were not part of the study. However, at the end of 12 months, excess arm volumes were almost identical between groups, so we had no indication that patients in either group were more or less likely to seek out further treatment. Dr. Dayes, we appreciate the time and care that you took in responding to these comments and questions, and thank you again for your dedication to lymphedema research. LP References 1. Dayes IS, Whelan TJ, Julian JA, Parpia S, Kathleen I. Pritchard KI, D Souza DP, Kligman L, Reise D, LeBlanc L, McNeely ML, Manchul L, Wiernikowski J, and Levine MN. Randomized trial of decongestive lymphatic therapy for the treatment of lymphedema in women with breast cancer. Journal of Clinical Oncology Oct 20, 2013: Harris SR, Hugi MR, Olivotto IA, et al: Clinical practice guidelines for the care and treatment of breast cancer: 11. Lymphedema. CMAJ 2001;164: , Dr. Ian Dayes is a radiation oncologist at the Juravinski Cancer Centre in Hamilton, Ontario and an associate professor in the Department of Oncology at McMaster University. Following his residency training, he completed a 2-year Master of Science degree in Health Research Methodology, learning how to design and conduct clinical trials. 8 Lymphedemapathways.ca Spring 2014

9 Clinical Perspectives Understanding Cellulitis A serious concern for lymphedema patients and those at risk By Dr. Mieke Flour 1 Terminology, definition and causative organisms Bacterial infection of the dermis and subcutaneous layers, known as cellulitis, is potentially serious. It may spread locally and require hospital admission. In many reference books, a distinction is made between the deeper entity called cellulitis and the more superficial erysipelas. Clinically the distinction is not always clear. Erysipelas is said to have significant lymphatic involvement. Cellulitis as erysipelas is commonly due to streptococcal infection (b-hemolytic Streptococcus pyogenes group A, C, G). When the infection is a complication of a pre-existing dermatological disease, a wound, or immunosuppression, staphylococcal (S. Aureus) or mixed infection should be considered. The likely organism will determine the choice of antibiotic treatment. Cellulitis accounts for about 2-3% of hospital admissions in the UK, and is said to occur in 20-30% of cases of chronic lymphedema. 2 Clinical presentation, symptoms and diagnosis The diagnosis of cellulitis is based largely on clinical signs and symptoms. Systemic and local symptoms may precede skin changes. Systemic symptoms may include: sudden malaise, fever, shivering or chills. There may be accompanying headache, nausea and vomiting. In severe cases systemic involvement can be expressed as tachycardia and hypotension. Locally, cellulitis often presents as an acutely red, warm, painful, swollen area. Systemic and local symptoms may precede skin changes. Systemic symptoms may include: sudden malaise, fever, shivering or chills. There may be accompanying headache, nausea and vomiting. The edges may be sharply demarcated, and inflammation may rapidly spread peripherally within hours or days. Sometimes red streaks suggestive of lymphangitis develop, and regional lymph nodes are tender on palpation. Although it can occur at many sites, the limbs are most commonly affected, especially in the case of concomitant lymphedema. Dr. M. Flour is a Dermatologist who was affiliated with the University Hospitals of Leuven, Belgium, until recent retirement. She has been involved in the in- and out-patient care for people suffering from skin lesions due to vascular disorders. For almost twenty years she participated in the multidisciplinary management of the diabetic foot syndrome. Studies indicate that 66% of cellulitis cases occur in the lower limbs. Laboratory tests are generally not helpful in establishing the diagnosis. Swabbing intact skin most often does not serve to identify the causative organism. Swabs from nose and throat or other natural niches may indicate carriership, but again may not identify the infectious organism. There may be indication for taking a swab if a culture can be obtained from a port of entry, blister or ulceration in the infected region. Blood tests may have limited value in diagnosis. While Erythrocyte sedimentation rate, C-reactive protein and an elevated white cell count indicate an inflammatory reaction, leukocytosis is found in only half of cases. An elevated ASO titer, or swab with culture from intact blisters may sometimes confirm a streptococcal or other causative organism. Anti-DNAse B and ASO titers are considered to FACTS & FIGURES n 66% of cellulitis occurs in the lower extremity n There seems to be a significant increase of cases in the summer months n The risk of recurrent infectious episodes is said to be greater than 50% within a year following a first attack n Recurrent episodes of cellulitis may start a vicious circle of infection and worsening edema Photo: CanStockPhoto Spring 2014 Lymphedemapathways.ca 9

10 Cellulitis Treatment Tips Treat with antibiotics as soon as possible, according to local guidelines Administer an effective dosage: high enough and long enough Treatment may be started at home, but in severe or recalcitrant cases hospitalization is strongly advised Current guidelines are based on limited but positive evidence of benefit, and on professional consensus. be good indicators of streptococcal infection: the antistreptolysin titer rises at 7-10 days following streptococcal infection, and will remain elevated for several weeks. Blood cultures, however, are rarely positive, and therefore not routinely done. In immunocompetent patients, frank bacteremia (with positive blood cultures) is only present in approximately 5% of cases. In cases of parasitic infestation an elevated eosinophilia is part of the inflammatory reaction. Biopsy or aspirate from the deeper layers of skin are of limited value in the diagnosis of cellulitis, but they may be helpful for differential diagnosis. While challenging, it is important to differentiate cellulitis from other acute, potentially more serious infectious conditions that present with local inflammatory reactions. 3 Risk factors or predisposing factors Most cellulitis cases are treated in primary care; however most studies about epidemiology and concurrent conditions associated with cellulitis have been done on hospitalized patients. Therefore the data on incidence, comorbidities and recurrence rates is prone to selection bias. We do know that gender poses an equal risk and interestingly, there seems to be a significant increase of cases in the summer months. Additionally, there appears to be greater risk in older age groups. Normal skin resists penetration by the micro-organisms that routinely colonise its surface. Epidermal antimicrobial peptides and Langerhans cells are the most prominent factors in the defensive responses. As the lymphatic system has a role to play in antigen presentation and defense against infection, any breach in this complex lymphatic defense mechanism may increase the risk of invasion by bacteria either through a local portal of entry, or by haematogenous transfer (by the bloodstream) to areas of limited lymphatic clearance. Numerous local and systemic risk factors exist including: lymphedema, previous cellulitis, a pre-existing wound or dermatologic disease. Systemic risk factors include uncontrolled diabetes or immune suppression. Chronic lymphedema (present in 18% of cases) is considered to be the most important risk factor for cellulitis. Furthermore, it presents an increased risk, greater than 50% within a year following a first attack, of recurrent infections. Obstruction of lymphatic drainage, which may occur secondary to a tumor, excessive skin folds, fat masses or trauma to the lymphatics (surgery, radiotherapy), may predispose one to cellulitis. Chronic disturbance in lymph flow and function results in an impairment of the innate and adaptive immunologic defense against infection. Additionally, the resulting secondary skin changes may compromise skin barrier integrity and homeostasis, and may thus permit local overgrowth of fungi, yeasts and microbes. Interestingly, several studies found lymphatic insufficiency in the unaffected limb in people with erysipelas. This may point to an underestimated pre-existing lymphatic condition (Damstra 2008, et al). 4 Recurrent cellulitis Recurrent episodes of cellulitis may start a vicious circle of infection and worsening edema. The mechanism is likely multifactorial. Hypotheses as to the cause of recurrent infections include a failure to completely eradicate the infectious agent, a state of local immune deficiency related to lymphatic insufficiency, and natural carriers of streptococci. Statistics on recurrence rates differ between data gathered in a primary care setting and in hospitalized patients. In a Belgian primary care study (Bartholomeeusen, 2007), 16% were reported to have one or more recurrences. 5. Management of cellulitis Cellulitis progresses rapidly in severity and extent, therefore treatment should be prompt and effective. Treatment aims at resolution of symptoms, prompt admission to hospital (if required), and avoidance of sequelae. General measures to reduce morbidity are: bed rest, elevation of the affected limb, skin care, wound care, and analgesia. Antibiotics are required to treat cellulitis, but type, administration route and course of treatment varies. Many lymphedema specialists consider streptococci to be involved. Antibiotic treatment guidelines vary by country, population, level of health care, issuing organization, and whether treatment is for cure or for prevention. Even though Photo: M. Flour 10 Lymphedemapathways.ca Spring 2014

11 most patients with cellulits are treated in a home environment, recommendations are largely based on a few RCT s conducted with hospitalized patients. Many organizations and associations throughout the world have published clinical practice guidelines and documents, including CREST, British Lymphology Society (BLS), and the International Society of Lymphology (ISL). Oral or systemic penicillin is commonly used against streptococci. Flucloxacillin may be preferred to treat staphylococcal infection in some countries because it is also effective for streptococci, with a low minimal inhibitory concentration (MIC). The CREST guidance in 2005 puts it as first-line treatment, with clarithromycin in case of penicillin allergy. Due to its greater tissue penetration, a large consensus group in the UK has chosen amoxicillin for the management of cellulitis in lymphedema (Keeley V, 2009). This group recommends oral amoxicillin 500mg every 8 hours for a minimum of 14 days. For patients with a penicillin allergy, clindamycin is the drug of choice prescribed at 300mg every 6 hours for at least 14 days. Along with monitoring systemic symptoms, response to treatment can be easily tracked by marking the periphery erythema and ensuring that the involved area, over time, is diminishing in size. In mild cases of cellulitis, with limited systemic involvement, oral outpatient treatment is reasonable. However, hospitalization for systemic treatment is advised for the following: unclear diagnosis, serious concurrent illnesses, septicemia (hypotension, tachycardia, high fever, continued on page 12 Photo: M. Flour REgiSTER Now! Academy of Lymphatic Studies Courses in Manual Lymph Drainage (MLD) and Complete Decongestive Therapy (CDT) Lymphedema Management Seminar (31 hours)* $895 This 4-day course serves as an introduction to the management of uncomplicated lymphedema affecting the upper and lower extremities, using Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy. We offer both Certification Courses and Seminars. Complete Lymphedema Certification (135 hours)* $3150 This course provides certification in Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy according to the rules and regulations set by the Lymphology Association of North America (LANA). Certification in Manual Lymph Drainage (40 hours) NEw! $1150 This 5-day course will certify therapists in the MLD Techniques developed by Emil Vodder, Ph.D. and will enable you to create treatment sequences for the management of edema including post-operative/post-traumatic edema and pathologies such as fibromyalgia, migraines, chronic fatigue and more. CEU s are available for all courses. Tuition in US dollars. Call for dates and locations. website Phone or * Course registration includes educational CD-ROMs, textbook, posters, bandaging supplies and more. Early Registration Discounts and Financing options Available. Spring 2014 Lymphedemapathways.ca 11

12 In the presence of acute infection, lymphedema management should be limited to limb elevation. Compression, should be postponed until the acute infection is resolved. confusion, vomiting), cellulitis of the face, cellulitis secondary to wounds, and if the patient is unresponsive to 2-3 days of oral antibiotics. On admission, keep in mind that general (and local) signs and symptoms may be masked or modified by previous treatment. In many cases management will require a change of antibiotic regimen. Hospital management in severe or recalcitrant cases depends on local guidelines. Most centers prescribe intravenous antibiotics such as amoxicillin 2g every 8 hours, lucloxacillin or benzyl penicillin g every 6 hours. Clindamycin 600mg every 6 hours is chosen if the patient is penicillin-allergic. Response to treatment should be apparent within hours. Clinical signs of improvement include resolution of fever and inflammation. As symptoms subside, the treatment regiment may change to oral antibiotics. Sometimes this will mean an extended course of the same antibiotic but at a reduced dosage. Another option is to rotate the antibiotic either because there is no oral equivalent, or because the clinical response is considered incomplete. A 7-14 day course of treatment is accepted practice. Whilst treating the acute infection, management of pain may also be indicated. Acetaminophen is an appropriate analgesic. NSAIDs and other anti-inflammatory agents should be avoided as they tend to mask inflammation and, with severe infection, impede an accurate differential diagnosis. Photo: CanStockPhoto Photo: M. Flour If a patient has had two or more episodes of cellulitis in a year, there may be consideration for prescribing prophylactic antibiotics. While there is limited evidence and guidance for this practice, research suggests a reduction in overall number of episodes. French guidelines (Vaillant, 2007) recommend intramuscular benzathine penicillin million units every 2-3 weeks, or oral penicillin V 2-4 million units in 2-3 doses a day. Patients suffering from recurrent infections often quickly recognize the initial signs. They may be advised to carry a twoweek supply of oral antibiotics with them while travelling. 6 Managing lymphedema in the presence of cellulitis In the presence of acute infection, lymphedema management should be limited to limb elevation. Compression, should be postponed until the acute infection is resolved. Initial compression therapy postinfection will need to be applied in a supportive rather than compressive manner to accommodate individual patient needs and compression tolerance. Effective skin and nail care is essential. Any concurrent skin conditions must be addressed or they may continue to offer a port of entry for pathogens. Cellulitis may reveal an underlying (and perhaps previously unknown) impairment of lymphatic function. Therefore treatment should not only focus on the infection, but also on long-term management of lymphedema, which is essential to prevent recurrence of cellulitis and further aggravation of lymphatic function. LP References CREST (Clinical Resource Efficiency Support Team) Guidelines on the Management of Cellulitis in Adults, CREST, guidelines,%20crest,%2005.pdf Damstra RJ, van Steensel MAM, Boomsma JHB, Nelemans P, Veraart JCJM () Erysipelas as a sign of subclinical primary lymphoedema: a prospective quantitative scintigraphy study of patients with unilateral erysipelas of the leg. Br J Dermatol 2008: 158: Bartholomeeusen S, Vandenbroucke J, Truyers C, Buntinx F. Epidemiology and Comorbidity of Erysipelas in Primary Care. Dermatology 2007;215: Vaillant L. Erysipelas and lymphedema. Phlebolymphology. 2007;14(3): Keeley V, Riches K. Cellulitis treatment for people with lymphedema: UK audit. Journal of Lymphoedema, 2009, Vol 4, No 2, Editor s Note: Management of cellulitis in lymphedema may differ from that of cellulitis related to other conditions. There are no Canadian lymphedema-specific guidelines at this time. Recent Canadian guidelines focus on MRSA infections. For 2013 lymphedemaspecific guidelines published by the British Society of Lymphology see: Menu3/Revised%20Cellulitis%20 Consensus% pdf 12 Lymphedemapathways.ca Spring 2014

13 Advocacy Making change happen Advocacy Tips to Get Real Results By Niya Chari The 2013 Canadian Lymphedema Conference offered a unique opportunity for leaders from all of the provincial lymphedema associations, as well as members of the Partnership Working Group of the CLF, to participate in a National Lymphedema Advocacy Workshop. The Advocacy Workshop offered all of the provincial leaders the chance to share knowledge, build advocacy skills and coordinate key messages across the country for lymphedema advocacy. The workshop identified four main issues for lymphedema advocacy; a lack of education among health professionals, a lack of awareness and information for patients and the general public regarding lymphedema, a lack of funding for new treatments, research, supplies and insurance coverage and inequitable access to diagnosis and treatment for lymphedema across provinces. While these issues can seem overwhelming to address, in reality through targeted and wellplanned advocacy, it is possible to effect real and measurable change. As a summary of the intensive 3-hour advocacy workshop, below you will find some helpful tips to get started on advocacy for lymphedema. In reality through targeted and well-planned advocacy, it is possible to effect real change. Planning for advocacy Proper planning is the essential first-step for any successful advocacy effort. When developing your advocacy strategy, consider the following: What is the problem? Carefully assess the actual need and how it is not being met by current policies or programs. Consider who is affected by the problem, what the impact is on their lives, as well as the impact on social and economic structures, such as the economy and use of government and not-for-profit services. What are the potential solutions? Identify what needs to happen to reduce or eliminate the gap between what is currently available and what needs to be implemented. Reflect on whether existing models, best practices or successes can be replicated or expanded upon to meet your needs. Consider whether changes are required at the policy level to review existing policies and programs to make it more equitable and responsive to actual need, or as an access issue, to examine the structural, economic, social and other barriers that are preventing some people from accessing, or benefiting from a policy or program. Also consider whether strategies to Niya Chari is the Government Relations Manager for the Canadian Breast Cancer Network and is responsible for spearheading the organization s government relations and policy strategy. Niya has a Master of International Public Health degree from the University of Queensland and has over 12 years of experience in not-for-profit advocacy. better communicate or raise the profile of an existing policy or program can make it more effective in reaching the population in need. What are the proposed outcomes? Detail the tangible, measurable changes that will result from the proposed changes. Outline both the personal and individual benefits that will occur, as well as the larger systemic and governmental improvements that the changes will yield. Make sure to highlight any opportunities for potential cost-savings. Who are the targets? Ascertain the key individuals that have the authority and jurisdiction to implement changes, as well as the people and organizations that can advocate, promote or influence others to make changes. Consider both bureaucratic members, who are involved in program planning and administration and can promote internal change, as well as elected representatives involved in program planning and priority setting. Working through these questions will guide you towards developing your advocacy goals and implementing a strong and targeted advocacy strategy. Engaging allies For advocacy to be effective it is critical to engage and build strong relationships with the individuals, organizations and networks that will help support your advocacy goals. Some key tips to remember when working on strengthening your relationships are: Photo: CanStockPhoto Spring 2014 Lymphedemapathways.ca 13

14 Be prepared. Always research your issue thoroughly and ensure that you have accurate and relevant facts and data to support your argument. Remember to frame the issue carefully and consider that not everyone has the same background or understanding of the issues. Your messages should always be stated in simple, concise and positive terms. Get organized. Understand the positions of both your supporters and your opponents. Aim to convert your audience by learning about their interests, and positions on related matters. Target your efforts towards your key audience. Follow-up. Ensure that you respect deadlines and send follow-up documents and information within reasonable timeframes. Seek to position yourself as a resource to others by being a reliable, consistent and accurate source of information. Remember to always thank everyone who got involved and helped in your efforts. Communicating your message It is also essential to know how to communicate your message effectively by understanding and connecting with your audience. Most people you will encounter will genuinely be interested in hearing your thoughts and opinions. Elected officials, in particular, are committed to making a difference in their communities and appreciate hearing new suggestions on how to improve current policies and programs. In addition, keep in mind that for elected representatives, speaking to members of their community is a critical aspect of their position. Generally, the people you meet will be committed to resolving problems and implementing changes for improvement. However, they will require your guidance and support. To be able to properly support your advocacy goals, they will need: 1 To clearly understand the problem and the solution 2 To have a request that they are able to fulfill whether it be funding, partnership or a change in policy 3 To be able to count on you and your organization as a partner to help them fulfill your request. To gain the support of your audience you will need to: Present a clear summary of the issue, featuring a distinct problem and a proposed solution. Demonstrate the impact and benefits of the changes you are seeking to make so that your audience can feel that they are championing meaningful work. Express how your proposed changes will benefit constituents, program clients and patients. Tell a simple story that the audience can re-tell to illustrate the situation to colleagues and readers. Frame your messages to convey a sense of hope and opportunity. Articulate how your audience can be useful and help make improvements through concrete, specific actions. Give your audience a request that they can fulfill: Ensure that you limit your request to a single ask. This allows you to prioritize the issue of most importance and will allow you to more easily track your progress. Ensure that the request that aligns with their political party, foundation, or departmental priorities. Provide your audience with help and support from you to foster a sense of partnership. Rigorous planning, strong relationship building and effective communication are the hallmarks of strategic advocacy. Implementing these handy suggestions will go a long way towards helping Canadians with lymphedema experience better awareness, understanding and greater access to treatment across provinces. LP Photos: CanStockPhoto You Are Not Alone You have access to information, resources, contacts and support from people who know what you re going through from their own personal experience. You have the following organizations on your side. Alberta: Alberta Lymphedema Association British Columbia: BC Lymphedema Association Manitoba: Lymphedema Association of Manitoba Ontario: Lymphedema Association of Ontario Quebec: Lymphedema Association of Quebec Saskatchewan: Lymphedema Association of Saskatchewan Inc Lymphedemapathways.ca Spring 2014

15 Personal Perspectives The quest to live with lymphedema and not for lymphedema By Angela Connell-Furi Living with lymphedema definitely has its challenges. Having full body primary lymphedema and multiple chronic illnesses puts me into an entire different ball game. By the time I was six weeks old, I already weighed twenty pounds. The doctor s only response was what are you feeding this kid? My mother s response was breast milk. As an infant and into my teens the swelling in my limbs was thought to be related to Type 1 juvenile diabetes. The swelling progressed immensely in my feet and legs. By the time I was twenty one years old, I was given the universal reply lose a little weight, it will go away. My diagnosis took several years. It was a podiatrist who suspected that I had primary lymphedema and referred me to a vascular surgeon who had taken an interest in lymphedema. I was so grateful for the ray of hope that could lead me to find answers to why my legs and feet were so swollen. By 2009, my lymphedema was progressing in my arms, face and stomach as well. Since my diagnosis I have been blessed to have the opportunity to attend the Foeldi Clinic in Germany twice with my husband accompanying me. There he learned how to do full body MLD. We were quite persistent in learning as much as we could. We enjoyed getting out of the clinic and walking in the Black Forest with our walking poles! Everybody is different, but for me it was ideal to get two hours of exercise daily. I absolutely love the flat-knit compression garments I was provided. They have been so wonderful and helpful in my lymphedema management (along with CDT of course). I have a garment for my toes, knee-high stockings, a Bermuda short which goes from mid calf to under my breasts, arm sleeves and gloves. I cannot wear all garments at once as the compression is too much for my heart to handle. So I wear my leg garments during all waking hours as gravity can be so cruel. I wear my arm garments at night sometimes (as recommended by Professor Foeldi) and I wear them during exercises (when my arms are in use). My worst lymphedema now is in my stomach. I really struggle with that because it s progressing quite fast although I m doing everything I can. I was told by Professor Foeldi to lay down three times a day and do deep breathing exercises as that s really important for stomach swelling. I have asked my specialists here in Saskatoon and in Germany if debulking surgery would be right for me, but the responses have been that it is much too risky for me. Angela Connell-Furi lives in Saskatoon and worked as a Continuing Care Aide before her multiple health issues became too restrictive. She is now focusing her love of helping others within the lymphedema community. She is a member of the Lymphedema Association of Saskatchewan (LAS) Board, and takes care of their website, Facebook and communications. Lymphedema has impacted my life in several ways. Based on my current medical conditions, I feel the most grief over the inability to continue working in my career (Home Health Aide for the Saskatoon Health Region) and my inability to have children. My husband and I wanted to proceed with further fertility procedures, however, in consultation with a high risk pregnancy physician, we were advised to discontinue because of high mortality risk due to my multiple chronic illnesses including Type 1 diabetes and full body lymphedema. We have been on the list for adoption in Saskatchewan for almost eight years now. It took six years to have our home study done, and we continue to wait. Photo: CanStockPhoto Spring 2014 Lymphedemapathways.ca 15

16 My greatest blessings in life are my husband, family, and friends as they have been super supportive throughout the years! Everyday tasks that we take for granted like chopping food, standing and sitting for long periods of time, holding a book, using a hair straightener, kneeling, and even walking can be a hurdle for me. Summer time is different for me, as with thick garments and the heat, I rash easily and my entire body swells; I must say I do love Saskatchewan winters! I miss many things, especially roller blading and ice skating. There is so much time involved in managing four limbs with lymphedema along with the rest of my body. A very big challenge is my immune system, as when I get a flu or cold I have a very hard time fighting it off. A cold can last six months. The Foeldi Clinic s motto is live with lymphedema not for lymphedema. I still have not figured how to do this yet as lymphedema truly does impact everything I do. Despite the losses that I grieve there are many things to be thankful for. My greatest blessings in life are my husband, family, and friends as they have been super supportive throughout the years! I could not handle every day management of lymphedema without my husband Trevor. He does full body MLD on me when we can find the time, as he is working two jobs. Trevor also assists me with bandaging my legs and I must say he does it better than I Photo: Angela Connell-Furi ever could. I try to concentrate on the positive things in life and regardless how challenging living with lymphedema can be, I still have much to be grateful for. I have met so many wonderful people through sharing my story and fighting for better lymphedema care throughout Saskatchewan. Lymphedema patients from all over the world have contacted me after reading my story on the Lymphedema Association of Saskatchewan (LAS) web site. This makes me feel like I m a part of helping others and that helps me to cope with things much better. I m on the LAS Board and really enjoy the volunteer work I do. My biggest achievement with the group would be the web site I put together (with the assistance of a web designer). I strongly advise patients to get involved with their provincial associations, as it can be therapeutic! For more details on my story please visit Be positive, take care and never give up! LP Save $400 When You Register Before March 31st For Any Scheduled Course With Promo Code: PAPM1403 DID YOU KNOW? Germany has one certified lymphedema therapist per 3,000 members of the general population. North America has one certified lymphedema therapist per 100,000 members of the general population! Founded by Steve Norton, a renowned authority in the field of lymphedema therapy, the Norton School of Lymphatic Therapy is the premier educational institution for training rehabilitation professionals to become experts in the treatment of pathologies related to the lymphatic system. Upcoming Lymphedema Therapy Certification Course Schedule Denver, CO Philadelphia, PA Cleveland, OH Ft. Lauderdale, FL St. Louis, MO Long Island, NY Dallas, TX March 1-9 March April 5-13 April 5-13 April 26 - May 4 May June 7-15 Orlando, FL June Minneapolis, MN July 5-13 Los Angeles, CA July Olympia, WA August Durham, NC August 2-10 Freehold, NJ August 2-10 Cleveland, OH September (866) Toll-Free info@nortonschool.com 16 Lymphedemapathways.ca Spring 2014

17 Compression 3M and Coban are trademarks of 3M. Used under license in Canada. 2013, 3M. All rights reserved Conversations in Changing Practice & Improving Patient Outcomes go.3m.com/compressionclub Join the 3M Compression Club As health care providers, you play an important role in improving the quality of life of your lymphedema & chronic edema patients, especially when it comes to compression bandaging. We invite you to visit our online compression club to network, ask questions, and learn from one another. Share tips & tricks, connect with colleagues, or ask the experts all your compression-related questions. discuss & share your own experience treating patients with lymphedema learn from colleagues and industry experts stay up-to-date on industry news and events Learn More Club To learn more about 3M Coban 2 Layer Compression System Products, visit us at contact your 3M Critical & Chronic Care Solutions representative or call the 3M Health Care Customer helpline at These products can be ordered from your local distributor.

18 Ask the Expert Compression Bandaging Treatment protocols for lymphedema management By Martina Reddick Photo: CLF SlideBank QWhy is it so important to apply compression bandaging after Manual Lymphatic Drainage sessions? AIn the treatment of lymphedema, compression bandaging is the application of short stretch bandages used to increase tissue pressure in the swollen extremity. It improves the efficiency of the muscle and joint pump and prevents re-accumulation of lymphatic fluid. In the intensive phase of treatment, compression bandaging is the main component that helps the swelling reduce and remain so. Compression bandaging also helps break up deposits of accumulated scar and connective tissue. Manual Lymphatic Drainage (MLD) is a gentle hands-on manual therapy where the therapist effectively redirects the lymphatic fluid from an affected area of the body into an unaffected area, thereby improving lymph drainage. In combination with Complete Decongestive Therapy (CDT), the effects of MLD are prolonged and continually restore the limb to a more normal shape and function. MLD alone is not sufficient treatment for lymphedema in the intensive phase. If it is the only component of treatment offered, the results will be temporary and the lasting effect of removing lymph fluid from the swollen limb is not possible. It must be combined with compression to maintain the effects of the MLD. QWhy do some CDT therapists apply compression bandaging as part of the CDT session and others do not? Not applying compression bandaging is A sometimes a clinical decision made by the therapist that may be due to the therapist having insufficient training in CDT or due to time constraints in their clinic. Research shows that, of the four elements of CDT, the compression component has the largest effect on edema reduction. Therefore, the intensive phase should always include compression bandaging. The only circumstances for not applying compression bandaging are if a patient does not tolerate compression or if it is contraindicated. In these situations MLD alone may be their only option. QIs there a standard of treatment to expect? When seeking treatment for lymphedema A it is advisable to review the guidelines recently adopted by the Canadian Lymphedema Framework (CLF) with respect to training of therapists in lymphedema management using CDT. Those guidelines can be found on the CLF website. Complete Decongestive Therapy (CDT) is the commonly prescribed treatment of care for lymphedema in many countries. The components of care include MLD, compression bandaging, skin care, exercise and education in self-care. The International Lymphoedema Framework Best Martina Reddick is a nurse and lymphedema therapist in Newfoundland with her own business providing consulting and nursing services, after recently retiring from Cancer Care. She is a Founding Member of the Atlantic Clinical Lymphedema Network, a member of the Canadian Lymphedema Framework s (CLF) Advisory Board, Education committee and Chairperson of their nursing education subcommittee. Practice Guidelines recommend a progressive approach to lymphedema care, given the staging, severity and presentation of lymphedema. The therapist and patient should set the treatment plan in accordance with the patient s goals and include some or all of the components above. QWhat should a patient expect when visiting a certified lymphedema therapist? Most importantly, A on the initial visit, patients should have a detailed assessment as the treatment plan is determined by the stage, severity and complexity of the lymphedema as well as the person s functional and psychological well-being. A discussion with the patient will determine the treatment plan which may include some or all of the components of CDT. It is important that the patient be aware of the rationale behind the treatment protocol. A holistic multidisciplinary approach provides better results. Successful management relies on both the therapist and patient having an active role in the treatment. LP Photo: CanStockPhoto HAVE QUESTIONS? If you would like to have a question answered by an experienced lymphedema health professional, please contact us via canadalymph@live.ca Be sure to put Ask The Expert in your subject line. Photo: Jobst 18 Lymphedemapathways.ca Spring 2014

19 PROBLEMS: Swelling decreases microcirculation reduces immune function Restricted movement deterioration of the microcirculation REDUCE the symptoms of: swelling infection inflammation LYMPHDIARAL Drops LYMPHDIARAL Sensitive Cream LYMPHDIARAL Drainage-Cream

20 Training Standards CLF Consensus Statement The Canadian Lymphedema Framework (CLF) has adopted the following guidelines for Canada, with respect to training of therapists in lymphedema management using combined or complete decongestive therapy (CDT), also known as decongestive lymphatic therapy (DLT). The CLF recognizes that this is an evolving process and that changes are likely in the future. 1. Practitioners must have unrestricted licensure or ability to practice in a related medical field including but not limited to RN, PT, RMT, OT, MD. 2. The CLF adopts the guidelines of the National Lymphedema Network (NLN) and the Lymphology Association of North America (LANA) regarding the minimum requirements for CDT/DLT therapist training programs. A minimum of 135 hours of CDT/ DLT training must be completed in a program that meets these guidelines. 3. Practitioners providing CDT should represent themselves accurately as having sufficient training as outlined by LANA, and have attended a program that teaches to the LANA standards. These standards are also supported by the National Lymphedema Network (NLN). The CLF recognizes that practitioners are qualified to practice CDT if they have successfully graduated from a school or program that adheres to the LANA standards. 4. Massage therapists and other therapists who have not attended an undergraduate university health care training program, will still be recommended by the CLF, if they can provide proof of a total of 12 college credits of human anatomy, physiology and pathology from an accredited college or university. Concurrent with the LANA requirements, this requirement is waived in provinces where massage therapy is regulated and meets the commonly accepted standard of 2200 hours. 5. The CLF recognizes that massage therapists are not governed by a national body at this time in Canada and yet many are practicing competently as lymphedema therapists after having completed the required training. Therefore all therapists who have completed a minimum of 135 hours of CDT training in a single program prior to 2017 and meet the condition in paragraph 1 will be grandfathered and accepted for recommendation by the CLF. We anticipate that by 2017 all massage therapists and other non-university educated therapists who graduate from a CDT program will meet the requirements as set out in paragraph 4. Addendum Within the mandate of the CLF mission: The Canadian Lymphedema Framework (CLF) will work to improve the management of lymphedema and related disorders in Canada, the subcommittee recognizes the following: a) The CLF is not an accrediting or credentialing organization. b) The CLF will recommend therapists who have met certain criteria, as outlined above, in order to enhance the care of patients with lymphedema. c) The CLF education subcommittee will take a proactive role in contacting massage colleges and therapists who do not meet the 2200 hour standard of training in massage therapy to initiate a dialogue on how CDT therapists can meet the CLF recommendation. d) The subcommittee recognizes the need to create mechanisms for 1) Recognition of therapist training 2) Therapist referral (e.g. website) 3) Guidance of provincial organizations with regard to therapist training and referral Editor s note The CLF Board is pleased to announce that the document on training standards recommended by the CLF Education Working Group Standards Subcommittee was unanimously accepted by the CLF Board on October 27, 2013 as an official CLF Consensus Statement. The CLF Board commends this group for its work in helping to improve the standards of lymphedema care in Canada. Thanks to subcommittee members; Michel Eid, Robert Harris, Wendy Leroux, John Mulligan, Casi Shay and Dr. Anna Towers. TEAR AWAY 20 Lymphedemapathways.ca Spring 2014

21 LYMPHEDEMA Your Best Choice for Lymphedema Care At Shoppers Home Health Care, our caring, professional staff are available to assist you with all of your compression therapy needs. We have experienced, certified fitters on staff at select locations to measure and fit custom-made or pre-sized supports. A full range of Sequential Pumps and Pneumatic Sleeves are also available. Please feel free to stop by one of our locations for more information on how Shoppers Home Health Care can provide you with the best in compression therapy care. LONDON Cherryhill Village Mall 301 Oxford St. W (519) MISSISSAUGA Applewood Village 1077 North Service Rd. (905) TORONTO Mount Sinai Hospital 600 University Ave. (416) TORONTO Lawrence Plaza 528 Lawrence Ave. W (416) Ontario locations are registered ADP vendors. SCARBOROUGH 685 McCowan Rd. (416) PENTICTON 1301 Main St., Unit 709 (250) RED DEER nd Street, Unit 70C (403) CALGARY/SOUTH 25A, Ave. SE (403) VANCOUVER 370 East Broadway, Unit 202 (604) VANCOUVER # North Fraser Way (604) VICTORIA 1561 Hillside Ave. (250) Leading the way to healthier, independent lifestyles.

22 Clinical Perspectives What Do Hockey Night in Canada and Lymphedema Have in Common? By Janice Yurick Canadians love their hockey and the generous spirit of a small town in Alberta used this passion for hockey to raise cancer-related lymphedema awareness and funds to assist in the management of this sometimes distressing consequence of cancer. Rock the Fight is the brainchild of Anthony Martin. Over a period of four years the town of Vermilion, the Vermilion Rock Hockey Team, and the Vermilion Rock & EMS Prairie Cancer Fundraising Committee hosted a charity hockey game and event, raising over $100,000 in an effort to Rock the Fight against cancer. When one of Vermilion s own became a cancer survivor with chronic lymphedema, the fight became personal and a decision was made to use the 2012 proceeds to support the Cross Cancer Institute s (CCI) Department of Rehabilitation Medicine in its efforts to assist Bernie Webb and other cancer survivors who are living with lymphedema. Support came by way of the purchase of a Perometer for the department. A Perometer is an optoelectric limb volumeter. It uses infrared technology to provide a three dimensional model of the measured limb which is then used to calculate the full limb volume. A moveable four-sided frame emits two parallel rays of infra-red light beams. By placing a limb in the frame it interrupts the Photo: Cross Canada Institute path of the beams and detectors within the frame generate an image through a computer program. As the frame is moved along the length of the limb, the Perometer takes measurements every 3 mm. By assuming a circular or elliptical cross-section limb, volume is calculated. Janice Yurick works at the Cross Cancer Institute in Edmonton, Alberta as the Manager, Department of Rehabilitation Medicine overseeing the delivery of physiotherapy, occupational therapy, and speech-language pathology. Janice also sits on the Editorial Board of Pathways. The generous spirit of a small town in Alberta used this passion for hockey to raise awareness and funds. Limb volume, percentage difference between selected measurements, contour, and cross-sectional areas can be displayed via a computer software program. Thus, the Perometer software provides assessment of the limb volume and the percentage difference between limbs, and allows for inter-limb comparison over time. The Perometer is a valid, reliable and sensitive method to quantify limb volume, (Stanton AW, 1997; Armer, 2005) making it an ideal tool for both research and clinical applications. It was an exciting spring day at the CCI in the Department of Rehabilitation Medicine when a very large box arrived from Germany. Since May 2013, Perometer measurement has become a routine part of lymphedema clinical assessment at the CCI and the physiotherapists have become proficient in using this measurement device. The biggest change has been the Perometer s impact on assessment efficiency. Previously, as is common practice, we were using multiple girth measurements and a truncated cone volume calculation to determine limb and edema volumes; this process took upwards of 15 minutes per patient. The Perometer performs this task in a matter of moments and provides the measurement data almost instantly. By incorporating this measurement data, together with a thorough clinical assessment and patient determined treatment goals, an effective treatment plan can be developed in a timely fashion. To improve the versatility of this device, an industrial lift table was also purchased. By attaching the Perometer to the lift table the device is easily adapted to accommodate patients who have lymphedema involvement in either the arm(s) or leg(s). Rather than move the patient, the height of the Perometer is adjusted to accommodate either a leg or arm measurement by simply changing the height of the table. Standardized Perometer measurement procedures improve both the inter and intra-rater reliability and accuracy across time. It is vital that the patient position is standardized and can be replicated with each test. A small clinical tip is to ensure the stool where the patient is seated for the test is lined up with the lift table in a consistent fashion; this can be achieved by putting permanent lines on both the stool and lift table and lining them up Photo: CanStockPhoto 22 Lymphedemapathways.ca Spring 2014

23 each time. It is important that the table and chair height are recorded and consistent between tests. Similarly the foot/hand rest must be in exactly the same position for each test. Equally important, for measurement accuracy, is positioning of the limb. The angle of the limb must be aligned with the rail and perpendicular to the frame. Unless there is a known reason, the volume measure for the unaffected limb is a good indicator of measurement accuracy across time. If there is greater than a 1% difference in unaffected limb volumes, we would recommend that both the patient and Perometer positioning be rechecked and the measurements are repeated. After just a few months of use, the physiotherapy staff at the Cross Cancer Institute is deeply attached to their new Perometer. Not only is the new tool proving to be accurate, simple and fast but it has allowed them to spend more of patient care time where it really counts with the patient! The addition of a Perometer to our clinical practice has been one very positive step towards Rocking the Fight against cancer and cancer-related lymphedema. LP Letters to the Editor... As a healthcare professional who treats patients with lymphedema, having access to Pathways has enabled me to learn from its wonderful information. This translated into improving my practise and positive outcomes for my patients. The magazine helps me explain to patients that they are not alone. -Jean Ann Ryan, RNBN CDT, Atlantic Clinical Lymphedema Network Pathways elevated the visibility of our organization and lent more credibility since we are now seen as part of a larger collaboration. It has increased our ability to help more individuals to lead healthy and hopeful lives with lymphedema. It also created more opportunities for exchanges with other organizations across Canada to share experiences, successes and provide support to each other. - Lucette Wesley, President, BC Lymphedema Association We would love to hear from you... If you would like to drop us a line, please do so at: canadalymph@live.ca Perometer Precision Limb Measuring System The Perometer provides quick and accurate sizing of limbs for fitting into compression garments. It eliminates garment fitting problems resulting from incorrect measuring. The Perometer provides immediate volumetric limb measurements, it analyzes volumetric differences between limbs and monitors progress over time. The Perometer prints detailed progress reports and maintains data records for easy retrieval. 350 NT Perometer Model 350 NT for measuring in a seated position Perometer Model 400 NT for measurement in a standing position 400 NT Pero-System Messgeraete GmbH Lise-Meitner-Str Wuppertal - Germany or info@pero-system.de The Perometer System has been in use in Europe for over 20 years. It is now available in Canada. Spring 2014 Lymphedemapathways.ca 23

24 Helpful Suggestions Hints and Tips Mani/pedi protocols Having lymphedema in your arm or leg, doesn t mean you can t continue to look and feel pretty by visiting your favourite salon. However, extra precautions are required. Bring your own box of manicure tools if your salon doesn t already do so, and never allow anyone to cut your cuticles, rather have them gentle pushed back instead. You might also consider applying an anti-fungal cream or spray when you arrive home in case you may have picked up any fungus at the salon. Maintaining skin care According to personal preference and budget, the following skin creams are recommended by a Canadian dermatologist for maintaining good skin care for those with lymphedema. Vaseline, Aquaphor Ointment Glycerin 10%, Aquaphor 40%, H20 50% Glaxal base, CeraVe, Vaseline Creamy Lipikar Baume AP, Trixera, A-Derma Exomega, Restoraderm (Cetaphil), spectroeczema care, Cutibase, Cetraben Any oil, preferably not perfumed. Source: Dr. Catherine McCuaig Smart travel abroad Patients suffering from lymphedema have a significantly increased risk of infection. Consider speaking to your doctor about bringing along your own supply of antibiotics when traveling. This will be helpful if you develop cellulitis in geographical areas that have increased risk of disease (e.g. tropical regions) or in the event of a long delay in the emergency room or when antibiotics are not as readily available. LP Photos: CanStockPhoto DIVA (3482) COMPRESSION PATIENTS WANT TO WEAR Your patients deserve a compression garment that feels as good as it looks! LympheDIVAs provides either mmhg or mmhg medical compression in both sleeves and gauntlets and we do it in something other than just boring beige. With a huge selection of patterns and two crystal additions, we provide medical compression that patients actually want to wear. All our garments are made in the USA with a state of the art breathable and moisture wicking fabric with 360 stretch. THE VITALITY OF THE SEA 24 Lymphedemapathways.ca Spring 2014

25 Medical Updates Did You Know? Accuracy in detecting lymphedema A team of researchers led by Mei R. Fu, PhD, RN, ACNS-BC, Associate Professor of Chronic Disease Management at the New York University College of Nursing (NYUCN), offers supporting evidence for using Bioelectrical Impedance Analysis (BIA) ratios to assess lymphedema. The study, L-DEX Ratio in Detecting Breast Cancer-Related Lymphedema: Reliability, Sensitivity, and Specificity, published in Lymphology, argues because the low frequency electronic current cannot travel through cell membranes, it provides a direct measure of lymph fluid outside the cells. This allows for a more accurate assessment of lymphedema using a Lymphedema Index named L-Dex ratio. To lessen breast cancer survivors worry about lymphedema development, the BIA may have a role in clinical practice by adding confidence in the detection of arm lymphedema among breast cancer survivors, says Dr. Fu, even when pre-surgical BIA baseline measures are not available. BIA is time-efficient, easy to operate and to interpret, making it ideal for clinical practice. Our study also demonstrated that using a more sensitive L-Dex cut-off point allowed for BIA to catch 34% of the usually missed lymphedema cases, said Dr. Fu. This allows for earlier treatment, which naturally leads to better outcomes for at-risk patients. Source: New York University Critical legislature reintroduced in USA Congratulations to our USA neighbours for their relentless advocacy for better treatment of lymphedema coverage. Due to the hard work of Heather Ferguson and her team, The Lymphedema Treatment Act, HR 3877, was re-introduced on January 15, 2014, requiring Medicare coverage to include compression items for the millions of Americans who suffer from lymphedema. American citizens are asked to write their Representative today, urging him or her to co-sponsor the LTA. LP Source: LymphedemaTreatmentAct.org Victoria Vancouver Winnipeg Toronto Montreal Chicoutimi Fredericton Halifax Train in Canada Spring 2014 Lymphedemapathways.ca 25

26 Education Canadian and International Events May 9-10, 2014 Prince Albert, SK Lymphedema Diagnosis, Management and Care Symposium Hosted by the Lymphedema Association of Saskatchewan, this event will provide an evidence-based update on the diagnosis, management and care of all types of lymphedema. Keynote speakers include Dr. Anna Towers, Noreen Campbell, Eunice Mooney and Tracy Gardikiotis. n June 5-7, 2014 Glasgow, Scotland International Lymphedema Framework Conference Reduce Incidence, Manage Prevalence: A Realistic Goal? The ILF is proud to hold its 5th international conference at the University of Glasgow. n June 15-16, 2014 Truro, NS Atlantic Clinical Lymphedema Network (ACLN) will host their annual education session and meeting at the Colchester East Hants Health Center. There will be a product info session on Solaris with Lymphedema Depot, an annual meeting, as well as a one day course with Hans Von Zimmerman. n Contact andrea.tilley@horizonnb.ca for registration information. September 3-7, 2014 Washington, DC 11th National Lymphedema Network International Conference The Campaign for Lymphedema Care: Perspectives, Evidence & Practices Conference will be held at Washington Marriott Wardman Park. Registration is now open. n September 11 17, 2014 Montreal, QC ALT Aqua Lymphatic Therapy Tidhar Method The Lymphedema Association of Quebec is excited to be organizing a full Aqua Lymphatic Therapy (ALT) training in the Tidhar Method. For this session and other educational events throughout 2014 contact September 19-20, 2014 Quebec City, QC AQL/LAQ 10th Annual Lymphedema Conference Targeting health care professionals, patients, government, suppliers and other stakeholders. Organized by the Lymphedema Association of Quebec, in collaboration with the Lymphedema Program of McGill University Health Centre. n The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum Sponsorship Silver Sponsorship About the CLF The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada. The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts. Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration RR Lymphedemapathways.ca Spring 2014

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