Pathways Fall 2019 (Volume 8, Issue 4) by Canadian Lymphedema Framework

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

FALL 2019

Empowering patients and professionals

Obesity’s impact Health economics Prospective surveillance

10 Years

STRONG 2009–2019

NOUVEAU...

une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways

Editor’s Message

Ten years strong

Celebrating a decade of making a difference

elcome to this special 32-page edition of Pathways, celebrating the 10th anniversary of the Canadian Lymphedema Framework (CLF). November 6, 2009 was the day it all started as one hundred representatives from across Canada gathered in Toronto for a National Lymphedema Stakeholders Meeting. The results of this Participatory Action Research Project meeting were published in the Journal of Lymphedema (2010) and shaped the future of this organization. You can read more about the CLF’s journey through the last decade in this issue. Obesity is a growing problem that can lead to many different diseases including lymphedema. Dr. Paula Stewart, a recognized expert in this area, provides an excellent overview of this increasingly important topic. Understanding obesity and its impact on the body is key to gaining a comprehensive picture of the associated factors related to lymphedema risk reduction and management. Nicole Stout’s article about health economics provides a good outline of why and how we need to broaden the way we assess lymphedema and its impact and barriers to treatment. Although the article is written from an American perspective, many of the core concepts regarding the financial burden of lymphedema care will still be of interest not only to patients and treatment providers, but also lymphedema advocates as they continue their efforts to increase the reimbursement of lymphedema care within their province. An encouraging and inspiring article by scientist Pierre von der Weid, from the University of Alberta, demonstrates the funds being allocated towards lymphatic scientific research in Canada right now. His team’s area of research ventures into unchartered territory and is an encouraging addition to the lymphatic research community. We are very fortunate to include Pierre as one of our keynote speakers at our national conference in November and are Fa l l 2 0 1 9

eager to hear more from him about scientific research advancements. Another high profile speaker scheduled for our conference is Jill Binkley, the founder of a non-profit breast cancer rehabilitation centre in Atlanta, Georgia. Jill’s article leads readers through her Prospective Surveillance Model as an important pathway for physical therapy care and rehabilitation follow-up for women with breast cancer. This tool is equally instrumental to health care providers as well as patients, empowering them with knowledge about the importance of early intervention in reducing and

“If you want to go fast, go alone. If you want to go far, go together.” (African proverb)

managing the side effects of cancer treatment. Two of our editorial board members have contributed to this issue of Pathways. Dr. David Keast has provided a synopsis of the Canadian data related to the international LIMPRINT research study. Canada was one of ten countries participating in this prevalence study, and although much of the Canadian data was gathered from a lymphedema lower limb clinic, when compared with the McGill lymphedema clinic and breast cancer, the data gives a balanced picture of lymphedema in Canada. Dr. Anna Towers shares highlights of the recent international lymphedema conference, held in Chicago last June. We hope you will enjoy a glimpse of the topics and key messages that resonated with her. I am especially appreciative that Karen Bingham has agreed to share her personal story with us. Karen lives with primary lymphedema, as does her father, six of her ten siblings and a great number of nieces and

nephews. Now that she has finally received the proper diagnosis and is wearing appropriate compression, she was eager to share her story in a raw and honest manner. Her determination and passion to help others while working to raise awareness in her province, motivated her to found the Lymphedema Association of Nova Scotia, Canada’s 8th and newest provincial association. There’s nothing holding Karen back now! One amazing way to keep on top of developments in research, treatment and education about lymphedema is to attend our national conference in November (Toronto). Special patient pricing is available through the provincial lymphedema associations for their members. With a prestigious faculty that includes more than 37 plenary speakers, workshop leaders and abstract presenters, this conference is Canada’s leading lymphedema educational event. We hope to see you there! Lastly, I want to thank all of the many CLF supporters over the last ten years. These include industry sponsors, donors, grantors, exhibitors, advertisers, contributing authors and readers. Most importantly, our long list of volunteers include executive board members, editorial board members, provincial association chairs, education working group members and all the volunteers who spend hours selflessly devoting time to the CLF. It takes a village to tackle the lymphedema issues and we couldn’t be more proud of our villagers. We couldn’t have done it without you! LP

Anna Kennedy

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Contents

Obesity’s impact A North American perspective.

................................................. Health economics

Fall 2019 n Volume 8 Issue 4

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 Angela Dunphy Mei Fu PhD RN FAAN Pamela Hodgson PT David Keast MD FCFP Lori Radke PT CLT Anna Towers MD FCFP

The financial burden of lymphedema care.

................................... The prospective surveillance model of rehabilitation for breast cancer patients

Early intervention can improve cancer treatment side effects.

........................................... Conference review

Editor Anna Kennedy

Highlights from the 2019 ILF Conference in Chicago.

Editorial Assistant Nicole Boulet Editorial Intern Catherine Andrew 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 - $30. United States - $60. International - $75. Single copies and back issues - $8. Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Photos in this issue are courtesy of K.Bingham, J.Binkley, CAP Partner, Essity.

A model for the day Representing people with more visible lymphedema.

............................................ Ten years strong Celebrating a decade of making a difference.

Lymphedema impact

............................................

PRevalence INTernational (LIMPRINT) study: The final data.

24 26

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Canada’s Lymphedema Magazine

Pathways

Ac Pathcess wa Onlin ys e See page 4

FALL 2019

Obesity’s impact Health economics Prospective surveillance

10 Years

STRONG 2009–2019

NOUVEAU...

4 Ly m p h e d e m a p a t h w a y s . c a

...........................

Empowering patients and professionals

Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada

5 9

Scientific research developments

Increasing our understanding of the lymphatic system.

......................................................... TO ACCESS PATHWAYS ONLINE

une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways

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Clinical Perspectives

Obesity’s impact

A North American perspective By Paula Stewart The fact that North America is becoming increasingly obese is well recognized. What remains unclear is exactly why this has occurred in the latter half of the 20th century and the first half of the 21st-century. And what are the health implications of this growing epidemic?

pidemiologic records indicate that the obesity epidemic really began with the end of the Second World War. At that time, food preparation became industrialized and convenience foods became the hallmark of the modern family. There was also the rise of fast food loaded with calories, carbohydrates, harmful fats, and production beef, i.e. beef produced with estrogen implants to increase weight at the market 1,2. Additionally, in the 1960s and 70s, there was an awareness of the role of cholesterol in heart disease and therefore the low-fat diet acquired widespread endorsement. The fats removed from foods in production were replaced by sugars, most often fructose3. Only now are we recognizing the negative effects of fructose (as well as artificial sweeteners) on weight gain and the development of obesity4. These changes in our food intake and food production, combined with changes in our physical activity have accelerated the obesity epidemic. North America has embraced an increasingly sedentary lifestyle. There has been the rise of energy saving aids such as escalators, elevators, driving, TV as a leisure activity, video games, and delivery services

USA and Canada BMI Classifications Classification

United States BMI Category (kg/m2)

Underweight <18.5 Healthy (normal) weight to height

18–24.9

18.5 – 24.9

Overweight

25.0 – 29.9

Overweight: (Class I)

25-29.9

30.0 – 34.9

Obese: (Class II)

30-39.9

35.0 – 39.9

Morbidly obese: (Class III)

40-49.9

< = 40

Super morbid obese

50 +

for everything imaginable. To effectively communicate about obesity there must be a recognized way to measure it. The body mass index (BMI), although flawed, is most widely accepted. This is the: weight (kilogram) / height (meters 2). There are slight variations in the classifications between the USA and Canada (see chart above). Changes in food production and an increased sedentary lifestyle have resulted in

Paula Stewart, MD, MS, CLT-LANA received her undergraduate and Master degrees from Stanford University. She attended medical school at the University of Minnesota in Minneapolis and completed her residency in Physical Medicine and Rehabilitation at the Mayo Clinic. Dr. Stewart co-founded LANA, The Lymphology Association of North America, and now serves as Vice president on the executive board. Dr. Stewart is currently in the process of developing a lymphedema outpatient clinic in the Chattanooga, Tennessee region.

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Canada BMI Category (kg/m2)

overweight levels increasing from 44% of the US population in 1960 to 66% of the population in 2004. Obesity increased within that same timeframe from 13% to 32%. More alarming is the increase in childhood obesity from 4% in 6 to 11-year-olds in 1971, to 19% in 20075. Childhood obesity is especially concerning because of the risk of associated health issues that increase with the length of time obesity has been present. Pediatricians are noting that rates of Type II diabetes, hypertension, fatty liver disease, gallstones and heart disease risk are soaring in children6. Complications of obesity in adults include increased mortality due to diabetes, heart disease, stroke and cancer, pregnancy complications, increased surgical risk, and psychological disorders such as depression. Increased annual medical costs related to obesity disorders are estimated to be in excess of $117 billion per year. Ly m p h e d e m a p a t h w a y s . c a 5

“Changes in food intake and food production combined with changes in physical activity have accelerated the obesity epidemic.”

Obesity is driving the evolution of disease and medical treatment. In adults we now recognize a common phenomenon called the metabolic syndrome, which is the development of belly fat causing subsequent health risks. Specifically, the metabolic syndrome is defined as the presence of three of the following risk factors: • E xcess waist circumference: – Men: Waist size greater than 40 inches or 102 cm – Women: Waist size greater than 35 inches or 88 cm • Hypertension • E levated triglycerides • L ow HDLs (high density lipoproteins or the good cholesterol) •H igh fasting glucose levels Treatment of obesity based on BMI For those who are overweight, with a BMI greater than 25 and less than 30, reducing calories can be effective. Multiple studies from Harvard, Stanford, Duke, and others have shown more weight loss, sustained longer, with corresponding reductions in triglycerides and increases in HDLs along with decreased fasting glucose and insulin and lower blood pressure on low carbohydrate diets. Classic examples of these types of diets are the Atkins diet and the ketogenic diet. In addition, those with a BMI greater than 25 and wishing to lose weight should increase activity. It is recommended that all persons exercise for 30 minutes, five days per week or 150 minutes per week. One quarter of Americans get no exercise at all. Additional benefits of exercise include increased energy, improved mental function, reduced risk of eight types of cancer, and improved insulin sensitivity and increased lean body mass. For those with Class II obesity with a BMI 6 Ly m p h e d e m a p a t h w a y s . c a

greater than 30, there are in addition to diet and exercise some pharmacotherapeutic agents that may be beneficial. However these same drugs may or may not be approved for use in Canada. There are agents that will prevent fat absorption from the gut and will result in approximately 3 kg of weight loss on average. Unfortunately, these agents very often cause significant diarrhea and can be quite expensive. There are also metabolism stimulants that reduce appetite. The average weight loss is approximately 5 kg with these agents; however, they have been shown to possess significant cardiovascular risks, rapid tolerance and dependence on these medications. Thus, if used, there must be close medical monitoring. There is a great deal of research currently underway looking at increasing the metabolism of fat burning through several different mechanisms. These are not currently available but may be a part of the solution in the future. For those with a BMI greater than 40, bariatric surgery is a potential solution (however there is variable access to this in Canada). This surgery reconfigures the anatomy of the stomach and the intestines to reduce caloric intake. There are restrictive procedures such as laparoscopic adjustable banding and sleeve gastrectomy. There are also malabsorptive procedures, which are represented by the biliopancreatic diversion. And there are combination procedures such as the Roux-en-Y gastric bypass. These surgical approaches can have dramatic results with 20 to 50 kg weight loss. The weight loss is often greater with the malabsorptive procedures than with the restrictive. Some of the additional benefits of bariatric surgery include: reduction of diabetes by 77%, reduction of hyperlipidemia in 83% of patients, elimination of hypertension in 66% of patients and elimination of obstructive sleep apnea in 88% of patients. Although beneficial, there are serious and widespread complications related to bariatric surgery including a 0.5% death rate, and persistent nausea and vomiting in more than 50% of patients undergoing the

procedure. Dumping syndrome occurs in more than 70% of those who have had bariatric surgery. Malnutrition, dehydration and other gastrointestinal complications are also common. Additional treatment approaches recently investigated include combining treatment for depression, which is widespread amongst those with obesity with a weight-loss program. By integrating behavioural weight-loss treatment with problem-solving therapy and antidepressant medications, studies have shown significant weight loss and reduction in depression a year later, compared to usual care. Another novel strategy has been to impose taxes on sweetened or artificially sweetened beverages. In Philadelphia, Pennsylvania in 2017, analysis of such a tax showed a 51% decrease in sales and consumption. In summary, prudent approaches to lifestyle changes that will impact health and weight control include the following: 1 Eat more small meals and eat at the same time; avoid late night snacking. 2 Watch portions. 3 Avoid sweetened beverages. 4 Avoid processed foods and attempt to eat mostly whole grains and fresh foods. 5 Exercise at least 150 minutes a week. The impact of obesity on lymphedema It is now known that lymphedema is present in the lower extremities when the BMI exceeds 53. That means that no antecedent lymphatic injury is necessary for the development of lymphedema. Obesity alone will cause lymphedema. Lymphedema in the upper extremities will occur when the BMI exceeds 100. There are multiple factors at play when obesity is present. Not only is venous pressure increased with excess weight, but also there is a mechanical factor. Very often the pannus will occlude venous and lymphatic return from the lower extremities. Additionally, the superficial lymphatics are more vulnerable to injury in the

Editor’s Note: Dumping syndrome is a condition that can develop after surgery to remove all or part of your stomach or after surgery to bypass your stomach to help you lose weight. Also called rapid gastric emptying, dumping syndrome occurs when food, especially sugar, moves from your stomach into your small bowel too quickly.

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fatty soft tissue present in an obese person. Thus, there can be breakage of these superficial lymphatics causing accumulation of additional lymphatic fluid in the extremities. These factors together will overwhelm the lymphatic system. The development of lymphedema within two years of surgery for breast cancer is associated with the patient’s BMI and patients must be counselled about this risk factor before treatment commences7,8. We know that weight loss can positively influence treatment of lymphedema. With reduction in the volume of the limb, it is easier to provide manual lymphatic drainage, bandaging and wrapping. Additionally, there is less likelihood of skin folds causing maceration skin breakdown and infection. A study in 2013 revealed that inducing obesity in a mouse model resulted in significantly reduced lymphatic transport, reduced lymph node uptake of interstitial fluid and abnormal lymph node architecture9. With weight loss there was normalization of lymph node size and function. Thus weight management may be an important means

Obesity rates in North America Percentage of the population with a Body Mass Index (BMI) of 30 or higher

*TERRITORIES: The Canadian study did not include the territories due to insufficient data. Statistics Canada suggests the territories have high obesity rates with Nunavut possibly as high as 28%. Sources: CDC.gov for American numbers: “Current and predicted prevalence of obesity in Canada: a trend analysis” published in CMAJ, 2014, for Canadian rates. Graphic by Amanda Shendruk (aeiq.ca).

of reducing the severity of lymphedema in at risk patients. Not only can obesity cause lymphedema, but lymphedema can also contribute to the accumulation of fatty tissue on the affected limbs. Lymph stasis results in the proliferation and hypertrophy of local fat cells. These areas of fatty deposition become chronically inflamed

and large numbers of macrophages are present. This results in phagocytosis and a classic appearance of “crown like” structures due to fat cell death10. It appears that this massive up regulation of fat cell deposition, which results from accumulation of lymphatic fluid in soft tissues, is driven by activation of certain genes such as peroxisome proliferator-activated receptor gamma (PPAR-g) and CCAAT/ Enhancer – binding protein alpha (CEPB-a). There is evidence that even small amounts of lymphatic accumulation in the soft tissues can result in promotion of adipose deposition in the subcutaneous space by increasing activation of adipose differentiation. This phenomenon is responsible for the typical appearance of Stage III limb with thickened skin, papillomas, and a dense fibrotic feel to the tissues11. The difficulties of lymphedema in an obese person or lymphedema caused by obesity are further highlighted by the challenges of treating such a person for their condition. Very often clinic equipment and furniture are certified only up to 350 pounds12. The waiting room furniture is inadequate to support the weight

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Ly m p h e d e m a p a t h w a y s . c a 7

of patients who weigh more. Additionally, the patient will often require two therapists in order to receive effective therapy. One therapist to hold the limb so that a second therapist can provide adequate massage and bandage the affected limb. Finding garments to fit can be frustrating, and expensive; without appropriate treatment these patients are more vulnerable to cellulitis and wounds causing expensive hospitalizations, antibiotic usage, and increased morbidity and mortality. Effective treatment of a patient with both obesity and lymphedema must include weight loss in addition to complete decongestive therapy. Often the morbidly obese patient with lymphedema is unable to exercise safely on dry land but can manage pool walking which will provide the benefits of aquatic therapy in addition to meaningful exercise. Exercise alone

can change tissue composition and has been shown to reduce the amount of fatty deposition within the limb. This is in part due to reduction in lymphatic stasis due to exercise. Exercise alone can have a singular and positive affect on lymphedema and should be encouraged in all patients with lymphedema, especially those who are obese13. A low carbohydrate diet is recommended for all those who are in need of weight loss5. In some cases, surgical intervention is recommended to achieve meaningful weight loss. There are many side affects of surgical intervention and this decision should be carefully considered before consent. Once ideal body weight has been achieved, adopting a less restrictive diet can be pursued. In conclusion, there is a reciprocal relationship between obesity and lymphedema. As the

obesity epidemic increases worldwide, more persons are at risk of developing lymphedema without an initiating lymphatic injury. Further, those with lymphedema are at risk of worsening the impact of their lymphedema with the development of fibro-adipose tissue deposition in the affected limb as they experience increasing obesity. We know that fibrosis and adipose deposition impair lymphatic function thus resulting in a forward feeding loop. Weight loss can protect an obese person from developing pathological changes of the lymphatic system and reduce the impact of lymphedema in those who already suffer from it. LP A full set of references can be found at www.lymphedemapathways.ca

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Research

Health economics The financial burden of lymphedema care By Nicole Stout Introduction The term â&#x20AC;&#x2DC;health economicsâ&#x20AC;&#x2122; is often used to represent perspectives on the cost of health care based on the utilization of services1. Utilization of health care services carries a cost and greater utilization increases these costs. It is widely recognized that individuals with chronic health conditions are often high utilizers of health care services and as a result, greater costs are incurred within the system. Questions often center on how to improve utilization of health care services through better condition management to constrain or better manage costs. Historically this has centered on medically directed interventions like prescription medications, high quality health care, and physician involvement for condition management. This is particularly important for the population of individuals living with lymphedema. Lymphedema is a chronic condition with a known burden of ongoing care that requires utilization of health care services. Managing lymphedema results in direct medical costs such as: doctor visits, frequent therapy sessions, durable medical equipment, compression supplies etc. In addition to the costs of simply maintaining the condition, there is additional cost burden when adverse events occur for someone with lymphedema. Cellulitis infections necessitate medications and possibly hospitalizations, many times through the emergency department. Further complications

from lymphedema can result in imaging tests and scans and additional physician visits. We think primarily about medical costs when we discuss health economics. However, substantial costs are incurred by the individual outside of the medical system when modifications are required to their home, workspace, or transportation means. Additionally, the costs associated with days off from work, or time lost with family or social engagements also must be considered if we are truly to assess and understand the economics of lymphedema management. Taking such a perspective will allow us to better understand what drives the utilization of goods and services needed to manage lymphedema, and what might be done to shift service utilization and therefore costs associated with managing the condition2. Condition management drives the economics of lymphedema Recent research has explored cost models regarding the management of lymphedema 3,4,5,6. This evidence suggests that there are two primary ways to improve health care service utilization for individuals with lymphedema. First is optimal condition management, mostly driven by better quality of care3,5. When lymphedema is treated with standard of care interventions, utilization of health care services is reduced. KaracaMandic and colleagues (2015) provided an

Nicole Stout, DPT, CLT-LANA, FAPTA is a renowned lymphedema therapist and research scientist. Her work has been foundational in developing the Prospective Surveillance Model for early lymphedema identification and management. Nicole works as a consultant to the National Institutes of Health Rehabilitation Medicine Departmentâ&#x20AC;&#x2122;s Office of Strategic Research, leading national initiatives in cancer rehabilitation.

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assessment of health care utilization for both primary and secondary lymphedema and found that introducing pneumatic compression for individuals with lymphedema had a positive impact on several health service utilization endpoints. Mainly, the study cohort demonstrated reduced rates of infection, a decrease in the need for manual lymphatic drainage therapy sessions, and an overall reduction in the number of outpatient visits. Arsenault and colleagues (2011) identified a reduction in infection rates and hospitalizations when their patients optimally controlled lymphedema through complete decongestive therapy interventions.

Understanding how social determinants of health contribute to lymphedema management is an important aspect of realizing and improving the economics of condition management. The second method for improving health care service utilization, of greatest relevance to the secondary lymphedema population, is through early identification of lymphedema onset and early, conservative management4,7. Studies identify that both direct and out of pocket costs associated with lymphedema are reduced when the condition is identified early and treated in a subclinical stage4,6. Early identification relies on prospective surveillance to monitor the individual who is at risk for developing lymphedema from cancer treatments. This approach enables early, conservative interventions. Again, a medically guided program to improve care. Ly m p h e d e m a p a t h w a y s . c a 9

While the aforementioned approaches focus on better quality medical care, there is far more beyond medicine to explore that impacts lymphedema management. Social determinants of health impact the economics of lymphedema The World Health Organization defines social determinants of health as the “conditions in which people are born, grow, work, live and age, and the wider set of forces and systems shaping the conditions of daily life”†. These include economic policies and systems, social norms, and social policies that influence an individual’s environment, social community, neighbourhood, education, and economic stability (Figure 1).

wears compression stockings, and is well-versed in self-management. He sees his doctor yearly and his lymphedema therapist every six months, or sooner if he has a flare-up. Mr. Owens is also diabetic, has persistent neuropathy in his feet (made worse by chemotherapy), has high blood pressure, and high cholesterol. He has a BMI of 28. He is divorced and lives alone in a 3rd story walk-up apartment. He walks six blocks each day to and from the public transportation that gets him to work. We may read this patient synopsis and think that it sounds like a well-managed situation. However, there are social determinants to further consider that could tell us a different story.

FIGURE 1

Social Determinants of Health based on WHO definition (N.Stout)

Notice that health and health care are but one determinant of health, albeit an important one, for individuals dealing with a chronic condition like lymphedema. If we consider the broad expanse of the conditions to which an individual is exposed, we may identify additional mechanisms that support lymphedema management. Mr. Owens is a 54-year-old man who had a malignant melanoma removed from his left leg and 15 lymph nodes removed from his inguinal groin six years ago. He developed lymphedema three years ago. He works full-time as a security guard in an automotive factory. Mr. Owens’ lymphedema is Stage II and he has been through decongestive therapy, 10 L y m p h e d e m a p a t h w a y s . c a

Neighbourhood and built environment: What neighbourhood does this individual live in? Is it safe? Does he have accessible transport to work and to health care providers? When he walks to public transit, is there a sidewalk? Economic stability: Is he comfortably able to pay his bills? Does he forgo activities due to costs? Does he have a substantial burden of debt? Social and community context: Does he engage in community social activities? Does he have a network of family and friends? Environment: Is he exposed to a safe working environment, free from toxins and pollutants?

Each of these social determinants should be explored. These factors can place undue stress, both physical and emotional, on individuals making them vulnerable to declining health and rendering them less able to manage their condition. Poor regard for these conditions can greatly alter the economics of lymphedema management, contributing to greater utilization of services. Future research and clinical work in the field of lymphedema management should seek to augment medical management by optimizing social conditions that are known to impact health status. Understanding how social determinants of health contribute to lymphedema management is an important aspect of realizing and improving the economics of condition management. The first step that can be taken by health care providers is to ask the questions that will identify the challenges our patients face in healthy living, and the barriers and root causes of problems they face in optimal self-care. This will help us understand what resources, beyond medical care and devices, are needed to support them. Patients can take steps too, to inform their health care providers of social circumstances that are challenging or constraining them. Unfortunately, this is a significant gap that we currently face. Patients frequently feel that these social conditions are not important to their medical providers and are often not regarded when they do bring them to the ’’providers’ attention. Additionally, policies need to support the role of social determinants as contributors to health and should lay a foundation whereby health is considered in all aspects of social policy8. Understanding the economics of lymphedema management needs to be explored beyond the medical intervention cost and utilization paradigm. Inclusion of perspective on an individual’s social surroundings can enhance overall condition management and contribute to better economic outcomes. LP A full set of references can be found at www.lymphedemapathways.ca Fa l l 2 0 1 9

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Clinical Perspective

Prospective surveillance Early intervention can improve cancer treatment side effects By Jill Binkley

reast cancer survivors and their families face a cascade of challenges during and after treatment. These include ongoing medical, physical and psychological issues1,2. Common physical side effects of treatment include lymphedema, upper extremity and trunk issues, pain, fatigue, chemotherapy induced peripheral neuropathy [CIPN], balance issues, weight gain, bone health issues and arthralgias (joint pain). These conditions, many of which are amenable to rehabilitative and exercise interventions, are known to lead to significant limitations in activities of daily living, leisure activities and work responsibilities3. There is mounting research that demonstrates that early intervention is important in reducing and managing treatment side effects4-8. For example, early detection and treatment of lymphedema has been shown to be effective in managing and reducing progression of the condition5. The Prospective Surveillance Model of Rehabilitation (PSM) was developed to promote early detection and management for the multitude of physical side effects of breast cancer treatment8. The model includes pre-operative, early postoperative and ongoing periodic physical therapy evaluation for side effects of treatment in breast cancer patients. The suggested timepoints of evaluation are within the first month after surgery and then at periodic timepoints in the first year following

Ongoing Exercise and Education Pre-Operative Rehabilitation Assessment (ROM, Strength, Baseline UE Volume, Function, Exercise Level, etc.)

Early Post-Operative Rehabilitation Assessment (Repeat Pre-Operative Measures)

Adapted from Stout N, Binkley J, Schmitz K et al, Cancer, 2012

diagnosis. Exercise and evidence-based patient education are woven throughout the model8. The need for the PSM Rehabilitation and exercise have been shown to reduce or prevent issues related to breast cancer treatment8. Unfortunately, most women in the United States and Canada do not receive this care and referral to physical therapy is not routine. Multiple barriers to this care were identified over 10 years ago and are still relevant today9. One barrier can be

Jill Binkley, PT, MSc, CLT, FAAOMPT is a Physical Therapist and Founder of TurningPoint Breast Cancer Rehabilitation. Jill is a Certified Lymphedema Therapist and a Fellow of the American Academy of Orthopaedic Manual Physical Therapy. She is a passionate advocate for increased attention to the unmet side effects of breast cancer treatment and the role of rehabilitation and exercise in improving the quality of life of breast cancer survivors.

12 L y m p h e d e m a p a t h w a y s . c a

Ongoing Surveillance (Timeframe dependent upon risk factors for impairment and functional issues)

Referral to and Initiation of Rehabilitation and Exercise Consultation and Programs as Needed

fragmented delivery of cancer care; surgery, reconstruction, radiation and chemotherapy often include multiple physicians and locations and even different healthcare systems. Another barrier is the lack of established relationships between the oncology, general surgery, plastic surgery and rehabilitation professions. Patients and their healthcare providers may have the sense that these side effects are â&#x20AC;&#x2DC;expectedâ&#x20AC;&#x2122;, not amenable to treatment and that they simply need to be tolerated10. Patients may feel uncomfortable advocating for care when their healthcare providers are saving their lives. The role of physical therapy for patients after orthopaedic shoulder surgery is common knowledge, but there is a general lack of understanding about the important role of rehabilitation and exercise for breast cancer patients. Fa l l 2 0 1 9

The PSM provides a pathway to physical therapy care and follow-up to address the many side effects of treatment known to be amenable to rehabilitation and exercise. When integrated into a patient’s medical and surgical care plan, the PSM can reduce the impact of issues such as lymphedema, decreased range of motion and function and fatigue through early treatment and education. There is even evidence that early physical therapy intervention may reduce women’s risk of lymphedema11. In summary, the PSM establishes a much-needed connection for survivors to access timely rehabilitation care, education regarding treatment side effects and exercise. Clinical experience with the PSM at TurningPoint The PSM was implemented at TurningPoint almost a decade ago. TurningPoint Breast Cancer Rehabilitation is non-profit, communitybased breast cancer rehabilitation clinic in Atlanta. The key assessment components at each timepoint include inquiry about symptoms

such as pain, fatigue, limb heaviness, numbness and tingling as well as measures of range of motion, strength, arm volume and upper extremity and overall function. Individualized and ongoing education regarding potential side effects of treatment, the importance of early detection and intervention as well as exercise are woven throughout the model. Additional inquiry and testing are added based on a patient’s needs and cancer care plan. Examples include assessment of axillary cording in the early weeks following surgery and sensory and balance testing prior to and during neurotoxic chemotherapy. When issues are identified at each evaluation timepoint, physical therapy intervention may include a combination of: •M anual therapy, therapeutic exercise, balance training • Lymphedema management, such as compression, exercise, manual lymph drainage, self-care and targeted stretching • Individualized aerobic and strength exercise program in the clinic, at home and/or in a community-based program

Key Assessment Components of the PSM at TurningPoint 1 Inquiry regarding: 3 Symptoms including pain, numbness and tingling, arm heaviness and signs of swelling 3 Usual exercise level 3 Limitations in activities and/or usual work, family and social roles 2 Range of Motion and Strength 3 Upper Limb Volume (Perometer12 or LymphaTech13,14) 4 Patient Specific Functional Scale15, Upper Extremity Functional Index16 and FACT-B17 • R eferral to other rehabilitation providers, including nutrition, counselling, massage therapy The general guidelines for evaluation are pre-operative, early post-operative (2-4 weeks) and then at approximately 3, 6, 9 and 12

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Left: Measure of right arm volume using perometer. Right: Measure of arm volume using LymphaTech, a new iOS compatible software application that utilizes 3-dimensional imaging to calculate arm volume. months. Our experience is that the majority of patients evaluated in the early post-operative phase have significant pain, range of motion limitation, axillary cording and/or functional limitations and active physical therapy intervention is initiated. Once treatment goals are met, the patient continues with ongoing surveillance based on their risk factors and individual cancer care plan.

While the PSM provides a roadmap for breast cancer rehabilitation, we find that detours are common. One of the challenges in our clinic has been to evaluate patients preoperatively. This is due to the difficult logistics of referral to a community-based clinic in the very stressful and busy weeks following a breast cancer diagnosis and prior to surgery. We find that patients entering the PSM in the early post-

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operative phase still reap the benefits of early detection of treatment side effects, education and exercise provided by the PSM. We examined the logistics and impact of implementing the PSM in a large inner-city hospital in Atlanta18. Patients were evaluated in the surgical clinic, facilitating pre-operative and early post-operative evaluation. Barriers to long-term follow up, however, included

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transportation and work limitations. In this setting, a rehabilitation navigator to communicate with patients and confirm follow-up appointments improved the effectiveness of the PSM model. The PSM can be adapted to different settings and resource availability. It is ideally individualized based on the type and phase of surgical and medical treatment, risk factors for development of side effects such as lymphedema, ability to be independent with exercise and patient preference. Patient perspectives on the PSM A woman’s breast cancer experience is complex, affecting all aspects of life during and following treatment. Women often report being uninformed regarding common side effects of breast cancer treatment, including lymphedema, upper extremity motion restriction, fatigue, weight gain, pain, and chemotherapy-induced peripheral neuropathy [CIPN]. They are often shocked that they do not always resolve after treatment, but remain part of their lives19. Breast cancer patients express strong, unmet needs for education, information and rehabilitation intervention for these side effects. The PSM empowers patients with knowledge by providing education and information about treatment side effects. The incidence and burden of side effects is reduced through early identification and timely rehabilitation. Integration of exercise throughout the model benefits patients at every phase of survivorship. The critical role of exercise in reducing breast cancer recurrence is emphasized and individualized exercise plans based on patient preference and phase of treatment are facilitated. In our experience, the PSM meets the often-expressed needs of survivors for information, guidance and intervention and improves the overall quality of life for individuals diagnosed with and treated for breast cancer. Real life experience with lymphedema and the PSM Tina (not her real name) was a 36-year old mother of a preschool child when she was referred to physical therapy four weeks following a left mastectomy and tissue Fa l l 2 0 1 9

expander. Ten axillary lymph nodes were removed on the left and two were positive for cancer. Tina was told by a healthcare provider at the hospital that she would not be able to continue to participate in her passion of ballet dancing because it may cause lymphedema. She was devastated and very fearful about her risk of lymphedema. Physical therapy treatment was initiated at Tina’s first post-operative visit to address pain, axillary cording and significant loss of shoulder motion and function.

Education was woven into her treatment program, including: • R eplacing lymphedema myths with evidence-based facts •C larification of risk factors, triggers and Tina’s individual risk of lymphedema • I mportance of early detection and signs and symptoms of early lymphedema • I mportance of exercise – including dancing - for patients at risk for and with lymphedema After eight physical therapy treatments, all measures had improved. Tina gradually returned to exercise, including dancing. A PSM plan was set up to follow Tina through her planned chemotherapy, radiation and beyond as needed. At Tina’s PSM evaluation timepoint nine months post-op and three months after radiation was completed, a 5% increase in left arm volume (compared to baseline

In our experience, the PSM meets the oftenexpressed needs of survivors for information, guidance and intervention and improves the overall quality of life for individuals diagnosed with and treated for breast cancer.

volume difference) was noted at her evaluation. There was very mild swelling noted between the flexor tendons at her left wrist. It was determined that she had mild lymphedema and she was advised to continue her regular exercise program and provided with a Class 2 compression sleeve to wear during the day. On re-evaluation in two weeks, there was no evidence of lymphedema and volume had returned to baseline. Tina was advised to continue exercising and adjust the wearing time of her compression sleeve based on symptoms for ongoing maintenance. Our long-term goal was to prevent progression of Tina’s lymphedema. This was monitored with self-evaluation and periodic volume measures in the clinic every 3-4 months and at longer intervals in subsequent years. Tina has achieved her goal and maintained her lymphedema at less than 8% for over five years and Tina continues her passion of dancing. Application of the PSM for patients with other cancer diagnoses Virtually all patients going through cancer treatment have significant side effects of treatment, including lymphedema risk. The PSM has potential application to other types of cancer and could potentially decrease the impact of cancer by facilitating early detection and rehabilitation intervention for issues common to many cancers such as lymphedema, pain, CIPN, balance issues and loss of function. LP A full set of references can be found at www.lymphedemapathways.ca L y m p h e d e m a p a t h w a y s . c a 15

Conference Review

Highlights from the 2019

ILF Conference in Chicago By Anna Towers and Anna Kennedy

Chicago, USA was the location of the 9th International Lymphoedema Framework (ILF) conference, held from 13-15 June, 2019. The opening plenary was chaired by Prof Christine Moffatt (ILF) and Prof Jane Armer, Chair of the American Lymphedema Framework Project (ALFP), who co-hosted the conference. Over 400 participants attended from 28 different countries including 15 national frameworks. Prof Neil Piller (Australia) and Anna Kennedy (Toronto) were co-chairs of the scientific and organizing committees respectively. With not enough space to review the conference in its entirety, the most memorable highlights and favourite topics are reflected here. RISK REDUCTION PRACTICES (A point-counterpoint discussion) In the opening plenary Judith Nudelman MD, CLT, who works as a physician in a radiation oncology clinic (and has lymphedema herself) defended lymphedema risk reduction behaviours by arguing that clinical experience is relevant and that research evidence can be biased. She supports existing risk reduction practices (as published by the National Lymphedema Network) and does not find them controversial or burdensome for patients. Rather, she believes they are based on decades of clinical experience by opinion experts. She discussed the published debates starting with the 2016 Journal of Clinical Oncology paper1, which concluded that other

than cellulitis, no other risk reduction elements are associated with lymphedema. However, she argued that they had used a 10% volume excess for diagnosis. She also referred to the NEJM articles2 that spoke of “debunking” risk reduction precautions”. Dr. Nudelman argued that the burden of risk reduction falls on the health care system, not to patients. Medical treatment needs to be modified if possible, to prevent lymphatic damage in the first place. Specifically surgeons need to cause as little trauma as possible, to avoid ALNDs and seromas. Dr. Nudelman did stress that treating the cancer must be the first priority, and then as a second priority, deal with any complications, such as lymphedema.

At the opening plenary Prof Piller delivered a tribute to Prof Michael Foeldi, who died in October 2019 at the age of 98. He put lymphology and decongestive therapy on a scientific basis, and published the first textbook of lymphology, which is now in its 9th edition.

Dr. Alphonse Taghian, a radiation oncologist from Harvard, and Director of the Lymphedema Research Program at the Massachusetts General Hospital, provided a counter-point on the issue of risk reduction practices. He argues that only data should drive clinical guidelines. Patients do not question the existing precautionary measures, however they are not evidence-based. These measures are being applied to all patients, no matter how big or small their risk (SNB vs. ALND). In a patient survey, the majority (52%) of patients said that

Anna Towers MD, FACP, is Associate Professor of Oncology, McGill University and Director of the Lymphedema Program, McGill University Health Centre (MUHC), Montreal. Anna Kennedy is the Editor of Pathways, and Executive Director/Founding Member of the Canadian Lymphedema Framework.

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precautionary measures impacted their cancer treatment. 75% felt that blood draws, BP measurements were the main cause of their lymphedema, (rather than the axillary node dissection and radiation therapy). He feels that we are causing unnecessary fear in patients. Unnecessary precautions can be harmful: for example, many unsuccessful attempts can be made for IV access in contralateral arms, leading to infection or DVT in that arm – or worse, patients may be turned away from procedures because the contralateral arm cannot be accessed. Clinical experience can also be biased by the clinician’s own beliefs. He concluded that although clinical experience should not be discounted, practice must be based on evidence from clinical trials. We know that skin care is important in that it will reduce the risk of cellulitis, which is a proven risk factor for developing lymphedema. The only blood pressure (BP) related published paper is Hayes 2005 (level 4 evidence) for BP vs. 8-9 papers that refute the evidence with level 2-3 evidence. There are four prospective studies. One from the PAL trial found only the use of sauna as a risk factor. The prospective study from Mass General followed over 5000 patients, including preoperative measurements, clinical examination and patient-reported outcomes. One third of their patients had ipsilateral infusions because of difficult IV access on the other side. There was no increased incidence of lymphedema. They found that ALND, cellulitis and trauma are risk factors. Their study brings reasonable doubt as to some of the guidelines currently in practice:

Dr. Stanley Rockson addresses the audience with his presentation on pharmaceutical treatment research. Fa l l 2 0 1 9

Walkers and runners prepare for the 5k/10k Medi Fundraiser to support participants from developing countries. •N CI 2015 guidelines say “avoid IV in affected arm and BP in at risk arm”. •N CCN 2018 guidelines say “do not avoid”… • A SBrS 2017 guidelines: “Personalized riskreduction strategies are more appropriate than blanket application of behaviours.” In closing, Dr. Taghian’s stated, “We need to re-assess indications and recommendations for risk reduction practices and behaviours that were never fully validated to begin with. We need to use due process. Not doing so is a disservice and a cause of high anxiety for patients.” Guillermo Oliver, a researcher from Northwestern University, Chicago, discussed advances in the anatomy and physiology of the lymphatic system. The lymphatics do a lot more than what was previously thought. Recently discovered roles include: 1. removal of cholesterol from peripheral tissues; 2. after myocardial infarction, increased lymphangiogenesis improves heart function (there is research on using VEGFc to improve cardiac recovery following MI); 3. glaucoma and the role of Schlemm canal malformations causing increased intraocular fluid and pressure; 4. meningeal lymphatics in ageing and Alzheimer’s disease; 5. lymphatics play a major role in metabolism and obesity. Mice that lack Prox 1 exhibit late onset obesity: there are gaps in the lacteal lymphatic endothelium of the small bowel, so fat transport is affected, chylomicron leaks into the tissues and stimulates pre-adipocytes to turn into abnormal fat. In humans, a sub-

Professors Neil Piller, Jane Armer and Christine Moffatt welcome participants in the opening plenary session. population of obese individuals could have a chylomicron breach. 6. In a variety of inflammatory bowel disorders, such as Crohn’s disease, there is leakage of chylomicrons and accumulation of fat in the small intestine and colon. Professor Oliver also addressed the topic from their research of identification of biomarkers for lymphatic disorders; e.g. this could be applied in patients who are obese because of lymphatic malfunction, or in Prox 1 type 2 diabetes, looking for signature proteins. Regarding lipedema, they suggest that lipedema patients seem to have lymphatic disorders. They have two candidate markers or genes, to show that some obese individuals may have lymphatic disorders and/or lipedema. COMPRESSION CHALLENGES Gavin Hughes (a clinical microbiologist from Wales) is part of a group involved in the testing of high-sales-volume compression lines and garments. The problem with compression garments is that they are a product of self-certification by the manufacturer, who may not have updated data to support the compression levels they advertise. “Manufactured to a standard” L y m p h e d e m a p a t h w a y s . c a 17

ILF Chair, Professor Christine Moffatt, presented an ILF award to Anna Kennedy, thanking her for her many years of hard work as she steps down from the ILF Board.

does not necessarily mean that the garment conforms to that standard. There may be variability in pressures attained and even in sizing in identically labelled products. Measured pressures are often less than the specifications, or they may have a negative gradient, which could be dangerous for the patient. Their initial study found a 75% compliance rate for garments tested. In a more recent testing (2018) there was a lower (58%) overall compliance. Prof Hughes stressed the need for independent assessors of compression products to ensure safety and adherence to manufacturing standards. We need to record and trend adverse incidents (such as mis-sized garments). Manufacturers need to have independent data to support their products. We also need to standardize pressure classes internationally. OBESITY Tobias Bertsch of the Foeldi Clinic, Germany, discussed the correlation between increased sugar consumption and obesity. Eight cancers as well as many chronic illnesses are directly related to obesity. In Germany, obesity is the primary cause of lymphedema. Obesity also has a direct impact on psychological and social functioning. Solutions? Diets fail in the long term. Psychologically, the dieter is over-responsive to food as it has increased reward value.

Sophia Hanson, Saturdays plenary speaker with Anna Kennedy. 18 L y m p h e d e m a p a t h w a y s . c a

Hormones that decrease appetite decrease and those that increase appetite increase. Metabolism slows down during dieting. They represent a dead end. Dr. Bertsch challenged us to think out of the box: change our attitude. Accept that obesity is a chronic disease for which there is no cure, but that we can control it. We need to change our therapeutic goalsâ&#x20AC;&#x201D;we should try to get patients to avoid weight gain, stabilize the weight and stop the damaging yo-yo effect: stabilize and exercise. Physical activity is overestimated as a means to achieve weight loss, but is underestimated regarding its positive impact on general health. Patients should receive comprehensive medical interventions. For motivated Class III obese patients, bariatric surgery is an option, for which the results data is good. However surgery needs to be integrated into a multimodal program. Conclusions: 1. Donâ&#x20AC;&#x2122;t blame our obese patients. We need to reduce discrimination towards them. 2. Obesity is a chronic disease: we cannot cure but we can improve. 3. Forget dieting. Diets make us fat and sick. Dr. Paula Stewart, a rehabilitation medicine physician from Tennessee, also addressed the topic of obesity, focusing on the USA. Obesity impacts lymphedema. All those with BMI over 53 have lymphedema. The low-fat diet trends of the 1960s and 1970s actually led to the obesity epidemic by promoting high carbohydrate consumption. A high food-additive fructose intake (soda drinks, breakfast cereals, condiments, sauces, energy bars) will alter lipid metabolism, leading to fatty liver and metabolic syndrome. Adipose tissue is more than a fat depot; it is an active secretory organ that promotes insulin resistance. There is a reciprocal relationship between depression and obesity: 43% of depressed persons are obese. After three years, 97% of dieters will have regained their weight. Low carbohydrate, high protein diets can lead to weight loss, but then one needs to maintain. We need to be more active: 150 minutes of physical activity per week and 2 days of strengthening. Damaging visceral fat is the first to be mobilized with exercise. Avoid soft drinks and super-sized portions. Eat nonprocessed foods. Get enough sleep as sleep deprivation has been shown to increase the risk of obesity and diabetes. There are studies ongoing on drugs that can turn white

fat into brown fat (which is more thermogenic). Concomitant depression needs to be treated. Bariatric surgery should be considered for BMI over 40 to improve metabolic indices, however there are complications to such procedures. Editorâ&#x20AC;&#x2122;s Note: You can read more about this topic in the article on Obesity on page 5 of this issue. PHARMACEUTICAL OPTIONS Dr. Stanley Rockson, Stanford University, spoke of newer drug treatment research on ketoprofen and Ubenimex. Lymphedema is a chronic inflammatory condition: over time it becomes nonpitting, with progressive fibrosis and abnormal fat. Dr. Rockson has been investigating the biology of that inflammatory state, looking at genes related to inflammation that express in late-stage lymphedema, and how the inflammation could be modulated by drug therapy. Most NSAIDs do not work and could make lymphedema worse. However, there is a single drug within this family called ketoprofen that blocks the leukotriene (LTB-4) inflammatory mediator pathway and reverses lymphedema changes. LTB-4 is also involved in insulin resistance and obesity. Controlled pilot studies in humans have shown positive effects of ketoprofen with BCRL on skin thickness and histology. Ketoprofen is an inflammatory drug in current use, but its use in lymphedema would be off-label. The FDA in the US has put a black box warning on all NSAIDs because of negative cardiovascular effects. Data from the Ubenimex trial (bestatin- a specific antagonist of LTB-4) are still being analyzed. INNOVATIVE APPROACHES Professor Neil Piller (Australia) gave an inspiring closing plenary session, looking at the re-discovery of the lymphatic system, encouraging us to revisit the historical knowledge and develop better diagnostic and treatment options. We need to remember the big picture and assess fully, the whole medical history, the whole body, and acknowledge the individuality of the patient. We need to remember primary prevention principles, modifiable risk factors, and initiate treatment early. We need to recognize medicationinduced edema: a slight change in some medications may make a significant difference Fa l l 2 0 1 9

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in lymphedema control. We need to have a consensus on chronic edema outcome measures, considering issues such as weight gain, fat gain, and muscle atrophy. We cannot use just circumferential measurements alone: newer technology can help. We should also become more involved in assessing function. Regarding surgical interventions: these newer techniques that are being used earlier in the course of lymphedema, need to be offered within a team that also provide conservative therapies to ensure the greater success of the surgery. Regarding risk reduction practices: are they fact or fiction? We need funding for further research to be able to answer those questions. Can we shift the focus towards more targeted interventions rather than “shotgun” treatments such as combination therapies? Can we do one intervention at a time, treating the patient as an N of 1 trial? We need better knowledge regarding the effect of pressures on the limbs and on the venous system, assessing pressure gradients, avoiding pressures that are too high (since lymph flow can be stopped or slowed). We need to continue to explore new therapies and new measurement techniques

such as elastography and ultrasound. What about technology for immobile patients, to stimulate muscle contraction? What about novel pharmacological solutions? Summary of priorities: early detection, early advice and treatment. We need to establish international consensus, best practice guidelines and funding for much more research. FUTURE PROJECTS Jane Armer, Director of the American Lymphedema Framework Project (ALFP) shared their organization’s current and future projects. The ALFP has completed and published systematic reviews on several important topics. They have drawn up best practice guidelines for breast cancer-related lymphedema and worked on clinically important assessment standards that have been published in medical textbooks. The ALFP is hoping to expand its minimal data set, using de-identified information from various lymphedema practices. The ALFP has developed a mobile platform for smartphones, to facilitate home observation and early detection of lymphedema. They hope to expand their Look4LE therapist database

internationally. Lymphedema symptom tools are available for breast cancer, melanoma, and gynecological cancer Lymphedema care guidelines will be completed in 2019. Christine Moffatt, Chair of the International Lymphoedema Framework (ILF) outlined their strategic work over the next year: to engage with all 15 framework countries to agree and validate international measures to be used by the lymphedema community in both clinical practice and research (Chronic Edema Outcome Measures). This should assist in providing robust guidance for reimbursement purposes. The ILF plans to complete and publish a scoping literature review and a qualitative study on this same topic to explore reimbursement issues faced by the medical device industry. A lot of work has been accomplished in the last several years with limited funding. Prof Moffatt encouraged everyone to use that work to drive change in policy and practice. LP The next ILF conference will be held 1-3 October, 2020 in Copenhagen, co-hosted by the Danish Lymphoedema Framework. You can view a selection of ILF conference presentations in PDF on the following website 2019ilfconference.org/ presentations-programme.

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A full set of references can be found at www.lymphedemapathways.ca

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Patient Perspective

A model for the day

Representing people with visible lymphedema By Karen Bingham

T Karen’s story I grew up in Corner Brook, Newfoundland and Labrador. My father had lymphedema. He had 10 biological children: all five girls have lymphedema, as do two of the five boys. The list extends to nieces, nephews and cousins. We all started seeing the lymphedema at puberty but we were not given any treatment besides diuretics. We were simply told that it was something we had to live with. I had extreme pain for decades, to the point that I considered going on disability. Thanks to the Internet, my family and I finally realized we weren’t the only ones with this illness. I finally got treatment with compression wrapping and then compression garments. The minute my legs were wrapped, the pain went away. It was amazing! It gave me my life back. I now work full time as a real estate agent and I go to the gym six days a week for kickboxing and weight training. I started the Lymphedema Association of Nova Scotia (LANS), for which I organize fundraisers. I also volunteer for local charities and care for a woman with physical and mental disabilities who has lived with us for 18 years. My life has completely changed in just a few years, all thanks to compression therapy. This is my story! Source: Adapted from www.jobstcanada.com

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wo members of the Lymphedema Association of Nova Scotia (myself and Stephen Chesseman, who was 14 years old at the time), were both very proud to be chosen to be among a group of ambassadors for Jobst Canada. One part of being an ambassador involves being a model for the day. I want to give you a behindthe-scenes look at our modelling experience. On April 2, 2018 we hopped on a plane to Montreal. At the airport, my dreams came true when there was a driver waiting for us, holding a card with my name on it. This was something that I had only seen in movies, so for me it was a big deal. Stephen was also very impressed. Stephen and I travelled to the hotel with a REAL MODEL, Berlange Presilus. You may have seen her story on the Internet or in the Spring 2019 issue of Pathways (if not, then you should Google her name). We stayed in a boutique hotel for a couple of nights and Stephen loved it. He really liked the huge bathtub and the fact that there were fluffy robes provided. Very early the next morning, a car picked us up and drove us to a downtown loft, where the photo shoot took place. I have to admit, I was a bit scared. I am not the modelling type. I don’t wear makeup and I hate getting my photo taken. I was afraid that with makeup on I would look like a clown. I was so happy with the makeup artist. He understood me from the minute he met me. He was amazing! He applied the makeup on me in a way that I still looked like me, just better. And the hair stylist was also fabulous! I wish I could do that myself with my hair! I am a “wash it and hope for the best” type of woman.

Stephen enjoyed all of the attention. He kept telling me he “loved being treated like a king”. A stylist had brought a lot of clothes for us to try on. Each of us got to choose three sets of clothes for the photo shoot. Stephen found the clothes he wanted to wear rather quickly. I took a bit longer… Each model did a video talking about themselves. The rest of the day was spent taking photographs, both individually and together, and eating and changing clothes and getting makeup and hair touch ups. It was an amazing day with an amazing crew! Friends and family were shocked that I did this. People asked me “Why?” Honestly, compression has given me my life back...It took away the lymphedema pain that I had for decades. I wanted to let people know my story and make them realize the importance of compression. Another reason why I did it was to represent people with more obvious lymphedema. I was tired of seeing only skinny-legged models in ads for compression stockings. Not that I only wanted large-legged people in ads either; I just wanted to see a variety. People who need compression come in all shapes and sizes. I loved that Jobst was listening and planned their marketing around various types of people who need compression. LP

Karen Bingham is a REALTOR® in Nova Scotia. She has primary lymphedema and is President of the Lymphedema Association of Nova Scotia. In the last few years, she has helped bring awareness of lymphedema through speaking engagements in Canada and the United States and through social media posts.

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Community Initiatives

The Canadian Lymphedema Framework

Ten years strong: Celebrating a decade of making a difference By Anna Kennedy and Catherine Andrew

In 2009, the Canadian Lymphedema Framework (CLF) began with an open space stakeholder meeting, bringing together 100 stakeholders from across Canada, who prioritized three areas of focus: Education, Research and Partnerships. Fast-forward to 2019 and these same pillars continue to guide the CLF Board in prioritizing annual strategies, projects and activities.

n the ten short years since the inception of the CLF, we have been able to deliver on each of these foundational pillars in a variety of ways. With the help of many internal and external contributors, the CLF has developed educational resources that can be widely distributed to patients, health care professionals, and community advocates alike. This standardized material includes resources that you may be familiar with, such as our extensive website, informational booklet, 2019 Inspiring Stories Calendar, and of course Pathways, Canadaâ&#x20AC;&#x2122;s Lymphedema Magazine. Pathways has been a special part of the CLF since our first issue in 2012 and it has continued to be a success through the contribution of all the amazing authors, designers, board members, sponsors, advertisers and subscribers.

By working with experts in lymphedema research the CLF has had the opportunity to collaborate on research projects designed to provide more context about the level of treatment and support that Canadian lymphedema patients receive. The Lymphedema Landscape Study, the Delphi Study and the Reimbursement Survey were conducted to understand who treats lymphedema and what training theyâ&#x20AC;&#x2122;ve had, what research needs should be prioritized, and what regional disparities

exist in reimbursement, respectively. The CLF also participated in two international research studies. LIMPRINT (Lymphedema Impact and Prevalence International), was a prevalence study to assess the number of patients with lymphedema/chronic edema and its impact on individuals and health services. The aim of participating in the study was to use the results in Canada to provide evidence

Anna Kennedy is the Editor of Pathways, and Executive Director/Founding Member of the Canadian Lymphedema Framework. She also served on the International Lymphoedema Framework Board of Directors for ten years. She is a recipient of the Queen Elizabeth II Diamond Jubilee Medal in recognition of her leadership and contribution to the lives of Canadians. Catherine Andrew works part-time as a Pathways Editorial Intern. She recently graduated from the Commerce program at Dalhousie University with a major in Marketing Management.

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for practice and as a support mechanism for reimbursement. The second study, The Chronic Edema Outcome Measures Project’s aim is to agree and validate international measures to be used in both clinical practise and research. Canada had one of the highest participation responses (713) out of the 8014 responses from 60 countries.

Over the ten years of the CLF, the many projects and initiatives would not have been possible without the partnerships with key players in the lymphedema industry. The CLF has collaborated with the International Lymphoedema Framework (ILF) on a number of projects, including to co-host the successful 2011 ILF Conference in Toronto. Members of the CLF, Anna Kennedy and David Keast have both served as ILF board members during different time periods, since 2009. In addition to the close partnership with the ILF, the CLF works with regional affiliates across Canada to ensure that we have an impact for Canadians affected by lymphedema in all regions. By holding quarterly cross-Canada calls and hosting bi-annual provincial meetings, we have been able to collaborate on a number of national partnerships, all with the goal of raising awareness for lymphedema and how it impacts Canadians across the country. Working with medical professionals, researchers, organizations and advocates we have been able to continue producing educational content and bringing people in the lymphedema community together. Fa l l 2 0 1 9

The CLF is honoured to have been recognized on the international stage, being voted “Most Inspiring Organization” by conference delegates at the 2014 International Lymphedema Conference in Glasgow, Scotland. At the 2019 ILF Conference in Chicago, the CLF was recognized for its contribution to the ILF and its participation in the planning and execution of the ILF conference. Looking ahead to the remainder of 2019 and throughout 2020, the CLF has defined key priorities and will be working on some exciting projects that will build on each of our pillars. An education postcard of “5 things every physician should know about lymphedema” will be distributed to doctors across Canada. Another initiative will be the completion of the portal on our website which will provide presentation templates, educational slide decks, and assessment tools to health professionals. As always, the CLF will be producing four more issues of Pathways which will bring many more research studies, patient perspectives, and breakthroughs in the lymphedema community to the doorsteps of readers across Canada. On another exciting note, the CLF will be hosting the 2019 National Lymphedema Conference in Toronto, Ontario from

Over the 10 years of the CLF, the many projects and initiatives would not have been possible without the partnerships with key players in the lymphedema industry. 1-2 November. The conference will bring together an audience of health professionals, researchers, patients and community advocates from Ontario, Canada and worldwide to learn from experts in lymphedema research, diagnosis, treatment, and self-care. You can register on our conference website today (https://canadalymph.ca/conference/ registration/). Since 2009, the CLF has operated with the mission of making comprehensive and effective treatment for lymphedema and related disorders accessible to all persons across Canada. The CLF has collaborated with academics, health professionals, industry, community organizations, and patients – while keeping patients at the heart of everything we do. Looking forward to the next 10 years, the CLF will continue to keep patients in the forefront and work towards a future where lymphedema education and comprehensive treatment for this chronic condition is accessible to all Canadians. LP

10 Years

STRONG 2009–2019

L y m p h e d e m a p a t h w a y s . c a 23

Research Perspective

Lymphedema Impact

PRevalence INTernational (LIMPRINT) study: The final data By David Keast The study For the purpose of this study, lymphedema was defined as edema present for more than three months, affecting any site of the body irrespective of underlying etiology or concurrent co-morbidities. There is growing recognition worldwide that this condition is under recognized and undertreated. The Canadian Lymphedema Framework estimates that one million Canadians suffer from lymphedema. The aims of this study were to determine the prevalence and functional impact of chronic edema in the adult population at a national and international level using modular epidemiological tools and to determine the impact of chronic edema on the lives of patients using demographic and disability assessment, health related quality of life, details of swelling, wound assessment, and cancer tools. In all, 40 sites in 10 countries including Australia, Canada, Denmark, France, Ireland, Italy, Japan, Turkey and the UK participated in this study. The results of this study were published in April 2019 in Lymphatic Research and Biology (Volume 17 No.2) for release at the International Lymphoedema Framework Conference in June 2019 (Chicago USA). In total there are 18 papers available for free access on the journalâ&#x20AC;&#x2122;s website.

Canada study site In Canada this study was conducted at Parkwood Institute Research, a part of St. Joseph Health Care. Lymphedema is the most responsible diagnostic code for 670 patients from June 2006 to July 2018 representing 24% of the Parkwood Institute Wound Care Clinic volume. Results Internationally 13,016 participants enrolled in the Core Tool. The Modular Tools were optional and only 1,359 participants completed these. Canada was one of the few sites that administered both the Core Tool and the Modular Tools. Only Canadian data were available from the Core Tool but both Canadian and International data were available for the

David H. Keast BSc(Hon), MSc, DipEd, MD, CCFP, FCFP(LM) is the Medical Director of the Chronic Wound Management Clinic at the Parkwood Institute in London, Canada. He is Clinical Adjunct Professor of Family Medicine, Schulich School of Medicine and Dentistry, Western University. He is Co-director of the Canadian Lymphedema Framework, Secretary, Board of Directors of the International Lymphoedema Framework and President of the World Alliance for Wound and Lymphedema Care.

24 L y m p h e d e m a p a t h w a y s . c a

Modular Tools. Our site enrolled 68 participants out of 248 patients contacted. Comparisons involved 9 Tables and 8 Figures. Some highlights: n Most participants in Canada were between 45 and 64 years of age (see Figure 1 in the paper) n The majority of Canadians were retired (57.4% see Table 2 in the paper) n The top 2 co-morbidities related to secondary lymphedema were venous disease, 72.06% and obesity, 54.41% (see Table 3 in the paper). n Canadians were better educated than their international counterparts (see Figure 2 in the paper). n There are significant differences between upper and lower extremity chronic edema. Upper extremity edema is primarily related to post breast cancer morbidity while lower extremity edema is far more complex in nature with multiple co-morbidities. n 62% have mobility problems n 39.7% of Canadians studied had wounds n Wound care was primarily delivered by nurses Fa l l 2 0 1 9

ound care was primarily provided in W the community in Canada but was hospital based internationally nR emarkably overall disability was rated relatively low at 32.8 on the WHODAS scale where 0 is no disability and 100 is the maximum nW hen we combine two Canadian clinic chart audits, one involving primarily lower extremity (Wang and Keast – 326 patients) and the other (Shallwani et al – 429 patients) involving primarily upper extremity, the international results are mirrored. These are reported in the paper (see Table 9 on the right). n

Conclusions When previous Canadian data along with Canadian LIMPRINT data are compared with available international data, the results are consistent, especially with data from the Core Tool reported by other countries. The LIMPRINT data provide a rich database for further evaluation. LP

TABLE 9

Comparison of two Canadian lymphedema clinic chart audits Characteristic

Shallwani et al7

Wang and Keast5

61.4

At diagnosis = 66.8

Mean age

Female 85% 52.1% Male

15% 47.9%

Cancer 81% 10% Primary 7% 4% Secondary 93% 96% Upper body

51%

1.2%

Lower body

45%

99.7%

Unilateral 74% 17% Bilateral 25% 83% References • Keast DH, Moffatt C, Janmohammad A. Lymphedema Impact and Prevalence International Study: The Canadian Data. Lymphatic Research and Biology 17(2): 178-186 March 2019.

• Papers found at Lymphatic Research and Biology and can either be read online or a pdf format can be downloaded. https://www.liebertpub.com/ toc/lrb/17/2.

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Research Perspective

Scientific research developments

Increasing our understanding of the lymphatic system By Pierre-Yves von der Weid, Shan Liao, Ian Soles and Jiang Yin

he lymphatic system is gaining recognition not only as an important mechanism to regulate the fluid that may accumulate in tissues, but also as a critical player in the response to inflammatory or infectious insults to the human body1. Thanks to technological improvements allowing researchers to better study and image the lymphatic system, our fundamental understanding of lymphatic functions in health and disease has steadily progressed in the last 10 years2. Thanks to philanthropic gifts, several projects in the

â&#x20AC;&#x153;The progress that ALNET scientists have made in the past two years (2017-2019), heralds perhaps a watershed moment for lymphedema and lymphatic researchâ&#x20AC;?.

lymphatic and lymphedema research field have been initiated in Alberta, Canada. The following is an account of some of the exciting findings and new endeavours on lymphatic and lymphedema research that have emerged in the last couple of years.

Pierre-Yves von der Weid, PhD is a Professor in the Cumming School of Medicine, University of Calgary, ALNET Co-Leader & Scientific Lead, Lymphedema Research and Education Program.

26 L y m p h e d e m a p a t h w a y s . c a

Alberta Lymphedema Network (ALNET) In the fall of 2018, the University of Alberta Faculty of Medicine and Dentistry announced the establishment of the Kipnes Endowed Chair in Lymphatic Disorders. A five million dollar endowment provided by the Kipnes Foundation, and a further one million dollar establishment fund matched by the University Hospital Foundation, provides a total of seven million dollars in lymphatic research. While the search for the ideal candidate for this Chair is ongoing, this inspiring news, combined with the progress that ALNET scientists have made in the past two years (2017-2019), heralds perhaps a watershed moment for lymphedema and lymphatic research. Front and center, researchers and interested stakeholders are paying earnest attention to the work that ALNET members have been advancing through close-knit partnerships both within Alberta and around the world. Several ALNET-funded projects are starting to generate preliminary foundational data. In particular, several metabolomics pilot studies are under way aimed to identify

biomarkers that can be used to diagnose lymphedema or to assess the susceptibility of an individual to the disease. Dr. Liang Li (University of Alberta) and Dr. Shan Liao (University of Calgary) joined forces to complete a novel analysis to probe potential differences at the molecular level between draining lymph nodes from both control and inflamed mice. They discovered that some small metabolites are present at significantly different levels in the mouse lymphedema model, a finding that has spawned novel research interests connecting neuron activities and inflammation, a critical process implicated in the development of lymphedema. In a second metabolomics study, Dr. Li garnered interesting data on the metabolites collected from the sweat of a small number of patients that may be involved in lymphedema. A larger-scale study is needed to verify and expand this knowledge. The patient recruitment and sample collection stage is currently ongoing. Along the same vine of research ideas, Dr. Li and Dr. David Wishart (University of Alberta) are teaming up with Dr. Jaggi Rao, a leading Canadian dermatologist, to initiate

Shan Liao, PhD is an assistant Professor in the Cumming School of Medicine, University of Calgary & Scientific Director of the Lymphatic Imaging Suite.

Ian Soles is ALNET Co-Leader & President of Salutaris Centre GP Inc. Jiang Yin, PhD is the Program Manager of ALNET.

Fa l l 2 0 1 9

the first ALNET-sponsored clinical study aimed at identifying early diagnostic or prognostic markers for lymphedema. Still at an early stage, the study currently focuses on method validation with a long-term goal to establish a standard clinical research protocol for lymphedema. Doctors Christopher Cairo and Jonathan Veinot (University of Alberta) applied their expertise in chemical synthesis and nanotechnology towards the development of novel light-activated tracers for live imaging of the lymphatic system. This important and highly anticipated tool will help assess both the structural integrity and the functional dynamics of the lymph vessels thus aiding greatly in the proper diagnosis of lymphedema. Last but not least, Dr. John Lewis (University of Alberta) and Ian Soles (Salutaris Centre for Lymphatic and Massage Therapy, Edmonton) recently agreed to jointly undertake a clinical study to investigate the application of Dr. Lewis’ patented Extracellular Vesicle technology in diagnosing lymphedema and (in a future followup study) in early classification of patients who are at higher risk for developing lymphedema. With the precious momentum from its first-round research initiatives, ALNET is striving to promote and build a conducive and collaborative research environment for the incoming Endowed Chair in Lymphatic Disorders as well as the Canada-wide lymphedema research community. The Lymphatic Research and Education Program at the University of Calgary The Lymphatic Research and Education Program was established in 2013 thanks to a gift from Dianne and Irving Kipnes. Within this program, we were able to recruit Dr. Shan Liao and launch the Lymphatic Imaging Suite, a state-of-the-art imaging facility, which allows us to study lymphatic vessels in animals and improve our understanding of our critical circulatory system. We have examined changes in lymphatic vessel function in response to infectious and inflammatory agents using various approaches and different animal models. In a recently published study3, we explored the mechanisms bacterial products such as lipopolysaccharide (LPS), or intestinal inflammation, used to compromise Fa l l 2 0 1 9

lymphatic function. We demonstrated that lymphedema prevention, care and therapy not only were the large lymphatic collectors in cancer survivors”, and are working on dilated under these challenges, suggesting meeting the September application deadline. loss of contractile activity and lymph drainage, Our main goal is to equip cancer survivors but also that the number of lymphatic vessels with the knowledge to prevent and/or better increased. This phenomenon, known as cope with lymphedema. Lymphedema patients lymphangiogenesis, typically occurs in largely rely on physical interventions aiming inflamed tissues and probably reflects a need at reducing fluid and protein accumulation for improved fluid drainage. We had observed in the tissues. These interventions have been similar changes in lymphatic vessel morphology clinically observed to lower the risk of cellulitis, and function in two other mouse models of suggesting that improving lymph flow boosts 4, 5 intestinal inflammation and are pursuing host immune protection in lymphedema their characterization in order to better assess patients. While these interventions have their importance and role in the progression been proven to be effective to prevent/delay of the disease. lymphedema development and reduce the risk We are also tackling the problem of of infection, the availability of lymphedema skin infections, which are very prevalent in therapies is not well distributed in cancer lymphedema patients. survivors, especially for In a new study about to be those living in remote rural published, we investigated locations and in lower Our main goal is how the immune system socioeconomic groups. to equip cancer responds to infection with The cost of the intervention survivors with the bacteria Staphylococcus has also been a burden aureus when it is associated for cancer survivors. the knowledge to with skin inflammation. The first aim of the prevent and/or We observed that skin study, in partnership with better cope with inflammation induces the Canadian Lymphedema lymphedema. changes in the lymph Framework, is to improve nodes, which receive education for lymphedema lymph from the skin. These patients and health changes involve enlargement of the lymph professionals, particularly for those living nodes, alteration of the cell components in rural or remote locations. and architecture. It is suggested that these Skin and soft tissue Infections (SSTIs) are changes impair early bacterial control. We also one of the major risk factors for lymphedema demonstrated a critical role of the structure progression. However, the mechanism remains protein “elastin”, which, in lymph nodes guides unclear. While recurrent infections spread interstitial fluid and small antigens to the extremely quickly and are life threatening, the lymphatic vessels6. These studies may have intervention for SSTIs in lymphedema patients important implications in vaccine design, is not well developed. The second aim of the where antigens with a high affinity to elastin study is to improve the Canadian lymphedema could be more efficiently delivered to the patient database, by establishing a biorepository appropriate lymph node zone resulting in of lymphedema patient samples and performbetter outcome of immune protection. ing cohort studies to identify blood and cell On the front of new initiatives, Dr. Liao signatures for diagnosis, prevention or therapy has taken the leadership to apply for a purposes. The third aim, from a fundamental Canadian Cancer Society and Canadian research point-of-view, will evaluate therapeutic Institutes of Health Research (CCS/CIHR) interventions to prevent or treat skin infection Cancer Survivorship Team Grant. The goal using animal models with the aim to translate of this team grant program is to improve the the results to lymphedema patient care. LP health outcomes for cancer survivors of all ages. We were recently invited to submit a full A full set of references can be found at application of our proposal titled: “Improve www.lymphedemapathways.ca L y m p h e d e m a p a t h w a y s . c a 27

Helpful Suggestions

Hints and tips Elevation on the go A portable footrest can be easily used in a car or airplane to provide elevation for your leg(s) during travel. Simply hang the straps over your tray table and place your feet in the footrest to allow for elevation. Most models are designed with adjustable straps to allow elevation whether your tray table is up or down. This is a great option to provide relief for your leg while travelling. Linda Gimble, Stetter, Alberta

Share your story People living with lymphedema can feel isolated and think no one else understands what they are going through. There are many patient stories on the Canadian Lymphedema Framework website

28 L y m p h e d e m a p a t h w a y s . c a

(www.canadalymph.ca/resources) and the 2019 Lymphedema Calendar that can provide hope and inspiration. Do you have a story to tell? Email us at canadalymph@ live.ca and to be featured in a future issue of Pathways magazine or other â&#x20AC;&#x153;Inspiring Storiesâ&#x20AC;? publications. Stay informed Reading Pathways magazine is only one way of staying abreast of what is happening in the world of lymphedema. Here are three easy updates to

incorporate into your daily routine: PubMed searches will scour the latest research news that involves lymphedema. Google Alert is an option to set your email to alert you when stories about lymphedema are in the news and when you register free for Sosido (https://www.alfp.org/sosido) you will receive an email each week containing the latest research about lymphedema and the publications of the American Lymphedema Framework Project research network. LP

Send us your hints and tips. Make it easier for those living with lymphedema. Share your day-to-day living tips. We invite patients, caregivers and health professionals to send in your suggestions and photos to pathways@canadalymph.ca.

Fa l l 2 0 1 9

Research and News

A series of films is now available for the support of lymphedema patients to help with understanding lymphedema and to support self-management. The films were created by NHS healthcare professionals in the United Kingdom and their patients, with the courtesy of the Lymphoedema Network Wales. Through the International Lymphoedema Framework, the Canadian Lymphedema Framework has been invited to share the films with our readers. They can be accessed from the Canadalymph website under https://canadalymph.ca/videos/ The films are produced by PocketMedic, a digital platform that allows clinicians in primary, secondary or community care to send film-based prescriptions to patients to help manage their chronic disease. The films can be watched on mobile phones, tablets or Personal Computers. Source: https://www.lympho.org/lymphoedema-films

Cellulitis in extremity lymphedema

This high volume, single center study investigated the prevalence, bacterial epidemiology, and responsiveness to antibiotic therapy of cellulitis in extremity lymphedema. From 2003-2018, cellulitis events from a cohort of 420 patients with extremity lymphedema

were reviewed. Demographics, lymphedema grading, symptoms, inflammatory markers, cultures and antibiotic therapy regimens were compiled from cellulitis episodes data for detailed analysis. Conclusions: The cellulitis prevalence and recurrence rate in extremity lymphedema were 12.6%, and 56.6%, respectively. Strongest indicators of cellulitis were increased affected limb circumference and elevated CRP level. Empiric antibiotic therapy began with coverage for Steptococcus species before broadening to anti-Methicillinresistant Staphylococcus aureus and anti-Gram negatives if needed for effective treatment of extremity lymphedema cellulitis. Source: J Vasc Surg Venous Lymphat Disord. 2019 Jun 24. pii: S2213-333X(19)30174-X. doi: 10.1016/j.jvsv.2019.02.015. J Surg Oncol. 2019 Jul 2. doi: 10.1002/jso.25525.

A noninvasive skin evaluation method for lower limb lymphedema

Evaluating the skin changes in lower limb lymphedema remains challenging and is often limited to palpation. We aimed to develop a noninvasive skin evaluation method for lower limb lymphedema patients. Twenty-five lower limb lymphedema patients were included. Skin induration and elasticity were measured using Indentometer® IDM 400 and Cutometer®

MPA580. The relationship between the properties of skin from the healthy forearm and thigh, those of the affected thigh, and age was analyzed. Predicted skin induration age (IA) and elasticity age (EA) were calculated from the forearm, whereas actual values were calculated from the thigh, and the differences were assessed. Patients were classified according to the International Society of Lymphology clinical staging system, and the differences were analyzed among the three groups (healthy, Stage I/IIA and Stage IIB/III). Skin biopsy was performed in five unilateral lower limb lymphedema patients, and the dermal elastic fiber area was determined using microscopy with Elastica van Gieson staining. EA significantly increased with disease progression, but IA did not change significantly. Microscopy revealed elastic fiber filamentous changes, with decreased elastic fiber areas in lymphedema-affected skin. Conclusion: To our knowledge, this is the first report to evaluate lower limb skin elasticity in lymphedema quantitatively and noninvasively. EA is useful for evaluating skin condition progression in lymphedema patients. Source: PMID: 31211932 DOI: 10.1089/lrb.2018.0089

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Did you know?

Education Education

Canadian and International Events October 3-6, 2019 Niagara Falls, Canada

Wounds Canada is holding their 2019 Fall Conference at the Hilton Niagara Fallsview. n www.woundscanada.ca

October 18-19, 2019 Chicago, IL

University of Chicago is holding a symposium: The Chicago Breast and Lymphedema Symposium. n www.uchicago.edu

October 26-28, 2019 Boston, MA

National Lymphedema Network is holding a conference: A cerebral experience: making sense of lymphedema. n www.lymphnet.org

November 1-2, 2019 Toronto, Canada

Canadian Lymphedema Framework is bringing their National Lymphedema Conference back to Canada’s largest city. The program is 2 days in length for health professionals and 1.5 days for the Patient Summit. The venue is the Toronto Airport Marriott Hotel. n www.canadalymph.ca

Happy 20th Anniversary to LANA Lymphology Association of North America (LANA) is celebrating its 20th Anniversary by offering the LANA exam at half price for ALL of 2019. This discount is available to both past and current students who are eligible to register in 2019 to take the LANA examination. This reduction will offer the exam for $215* instead of the current price of $430.

Please help LANA share this opportunity with your colleagues. *This applies to new applicants only. All prices noted are in US dollars.

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 www.albertalymphedema.com Atlantic Region: Atlantic Clinical Lymphedema Network www.atlanticlymph.ca British Columbia: BC Lymphedema Association www.bclymph.org Manitoba: Lymphedema Association of Manitoba www.lymphmanitoba.ca Newfoundland and Labrador: Lymphedema Association of Newfoundland and Labrador www.lymphnl.com Nova Scotia: Lymphedema Association of Nova Scotia www.lymphedemanovascotia.com Ontario: Lymphedema Association of Ontario www.lymphontario.ca Quebec: Lymphedema Association of Quebec www.infolympho.ca Saskatchewan: Lymphedema Association of Saskatchewan www.sasklymph.ca

www.canadalymph.ca

www.clt-lana.org

Empowering patients and health professionals. Pathways magazine is published quarterly. Contact your provincial lymphedema association for subscription details.

The CLF distributes Pathways including customized inserts through its provincial partners. The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum Sponsorship

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador

Silver Sponsorship

Lymphedema Association of Nova Scotia Lymphedema Association of Ontario

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

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.

30 L y m p h e d e m a p a t h w a y s . c a

Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001

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