Pathways Spring 2017 (Volume 6, Issue 2)

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

SPRING 2017

Empowering patients and professionals

Prevalence of lymphedema in Canada The evolution of exercise Skin characteristics of lymphedema Advocacy NOUVEAU...

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

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Editor’s Message

Thank you community volunteers

L

ymphedema prevalence in Canada is on the rise. Our previous assumptions were that cancer related lymphedema was most prominent. However Drs. David Keast and Anna Towers provide us with data that seeks to demonstrate otherwise and indicates that there are likely 1 million Canadians affected by chronic edema/lymphedema.

They also remind us that prevalence estimates should be viewed as representing ranges, rather than precise figures.

Lymphedema has many signs, symptoms and unique characteristics.

We hope our readers will be as interested in Carol Armstrong’s article on the skin characteristics of lymphedema, as our editorial board was. We thank Carol for such an innovative contribution to our clinical understanding of lymphedema.

We are delighted that our magazine continues to be a conduit for healthy exchange of ideas and opinions.

Karin Johannson is a well-known physical therapist, professor and researcher in the international lymphedema community whose article guides us through the evolution of exercise research and protocol.

Her message echoes what we need to be reminded of—that vigorous exercise is good for your affected limb as well as for your overall well-being. Find an activity you love— to continue staying fit and active.

Spring 2017

The photograph of the premature newborn infant with lymphedema in the legs (page 17) touched my heart. Dr. Elise Radina and her team are working hard at understanding how families with lymphedema cope. Her research study will include data about the experiences of parents from seven different countries and her team was kind enough to share some preliminary research results in this issue.

The article in our Summer 2016 issue entitled “Precautionary Practices for Lymphedema” garnered two letters to the Editor. We thank those readers for their feedback—as well as the original authors; Maria Asdourian and her research team who provided a written response to the letters. We are delighted that our magazine continues to be a conduit for healthy exchange of ideas and opinions. I quote one of our Pathways editorial board members: “The purpose of research is to try to shed light and provide rationale for clinical practice. Knowledge translation requires critical appraisal of the literature but it also requires the audience to be receptive to new and emerging research evidence.

This is how medicine progresses—otherwise we would still be bleeding people as per the middle ages!”

March is lymphedema awareness month, with March 6 declared as World Lymphedema Day. Ryan Clarke provides some timely advice and tips for provincial and national lymphedema advocates to incorporate when promoting awareness and advocating for increased care. We are also

encouraging readers to petition the World Health Organization (WHO) to dedicate and designate its 2018 World Health Day to lymphedema. It’s as simple as clicking on the link in the box below and adding your name and signature to the petition.

It is fitting that volunteer week in Canada (April 23-29) follows March Lymphedema Awareness month. It is a time to celebrate the power of volunteerism in our community and a dedicated time for us to honour citizens who volunteer their time and talents within the Canadian Lymphedema Framework (CLF), provincial lymphedema associations and in their region and local communities. We acknowledge your long hours spent fundraising, promoting awareness, participating in local events and advocating to your health ministries for better lymphedema care. Volunteers at the CLF include those on the Pathways editorial board, the executive board, the members of the conference scientific and organizing committees and of the various working groups. A heartfelt thank you to all leaders in community engagement for your incredible efforts. LP

Anna Kennedy

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Contents

Spring 2017

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Volume 6 Issue2

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 Pamela Hodgson, PT David Keast MD FCFP Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board.

Contents may not be reproduced without written permission of the Canadian Lymphedema Framework.

Subscription Rates (1 year) Canada–$25.

United States–$50.

International–$65.

Single copies and back issues–$7.

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 Stock photos in this issue: CanStockPhoto Other photos are courtesy of D.Keast, C.Armstrong, K.Johansson, E.Radina, NLNet and WonderBroads.

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

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The difficulty in obtaining accurate estimates for increasing rates of lymphedema.

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Signs and symptoms of lymphedema Skin characteristics Detection for breast cancer related lymphedema.

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Exercise and lymphedema The evolution of exercise research and protocol for lymphedema

The current importance of an exercise regime.

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Parents raising children with primary lymphedema Preliminary study results Understanding the lived experiences of parents raising children with lymphedema.

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Letters to the Editor Your feedback is important to us.

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CASE STUDY Teamwork to better manage lymphedema Case study outlining the importance of a multidisciplinary approach.

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The rising prevalence of lymphedema in Canada: A continuing dialogue

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Spring 2017

Research Perspectives

The rising prevalence of lymphedema in Canada: A continuing dialogue

Accurately estimating lymphedema rates in Canada is not easy

By David Keast and Anna Towers How many people in Canada suffer with lymphedema, or with chronic edema with lymphatic damage?

This question about prevalence rate is deemed important by lymphedema associations, by Ministries of Health, and by compression garment manufacturers and others. Although the lymphedema rate in Canada is increasing, it has been difficult to obtain accurate estimates of prevalence. In the following dialogue, Drs. Keast and Towers, two recognized Canadian lymphedema experts, seek to partially elucidate this issue with preliminary discussions.

Dr. Keast: Chronic edema/lymphedema worldwide is poorly recognized and often poorly treated. It is often considered by clinicians either to result from cancer and its treatment or to be primary. This assumes that lymphedema arises only from absence or damage to the lymphatics. If one reviews the physiology of tissue fluid management in the body one realizes that lymphatic dysfunction will result from tissue fluid overload regardless of its origin.

There is growing recognition that chronic inflammation ultimately leads to disordered lymphatic function and subsequent damage to the lymphatics. The current

accepted definition of chronic edema/ lymphedema is chronic edema lasting more than 3 months, minimally responsive to limb elevation and/or diuretics and with one or more secondary skin changes such as a positive Stemmer’s sign. In a review of 326 patients treated in our clinic (Parkwood Institute Chronic Wound Management Clinic) we determined that our patients had an average of 7.3 co-morbid conditions.

Those considered to be risk factors for lymphedema included chronic venous disease (75%), non-cancer related surgery (61%), morbid obesity (45%), trauma (20%) and paralysis (3%).

Dr. David Keast, MSc MD FCFP is a physician specializing in wound care and lymphedema and Clinical Adjunct Professor of Family Medicine, Schulich School of Medicine and Dentistry, Western University, London. He is the Co-Chair of the Canadian Lymphedema Framework.

Dr. Anna Towers, MD FCFP is Director of the Lymphedema Program at the McGill University Health Centre, Montreal. She was Co-Chair of the Canadian Lymphedema Framework from 2009-2015 and continues to be active in its various working groups.

Spring 2017

Dr. Towers: Thank you for that review. What your review shows is that by far the most common risk factors for chronic edema/ lymphedema are not cancer-related but rather non-cancer related. Estimating the prevalence for non-cancer related chronic edema is an important exercise. However, physicians do not diagnose these conditions as such, so we do not have Medicare diagnostic data to help us. Also, in the later stages of chronic edema many of these patients may show chronic inflammatory changes rather than pitting edema, with the result that clinicians may not use the terms chronic edema/lymphedema in their diagnosis. Bilateral legs are usually involved; there is no “normal” for comparison and to aid diagnosis. For all these reasons we can only come up with probable ranges rather than exact prevalence figures at this time. As for cancer-related lymphedema, it is relatively easy to estimate prevalence of lymphedema due to cancer treatment. We have national cancer statistics (even if they are a few years old) and we know the incidence of lymphedema after treatment for various types of cancer.

We also have American estimates to guide us.

Ly m p h e d e m a p a t h w a y s . c a 5

Dr. Keast: In 2009 the Canadian Cancer Society (www.cancer.ca) gave a figure of 810,000 Canadians living with cancer.

Shaitelman et al in 20151 gave a prevalence of 15.5% of cancer patients with lymphedema. Survival rates are increasing.

Conservatively we might estimate that the number of Canadians living with cancer is approaching 1,000,000. This would give a prevalence for lymphedema of 1,000,000 x 0.155 = 155, 000 which is consistent with the extrapolation from the American data.

Dr. Towers: However, this cancer-related lymphedema prevalence is greatly overshadowed by lymphedema and chronic edema caused by the rising obesity rate. International experts such as Christine Moffatt state that amongst those with a Body Mass Index of 40 and over (Obesity Class III), there is a 75-80% prevalence of edema with lymphatic insufficiency. Even if we say, conservatively, that there is a 50% prevalence of chronic edema in that population, we come to a figure of approximately 570,000 for Canada.

Prevalence estimates should be viewed as representing ranges rather than precise figures. However, we probably have 1 million or more Canadians impacted.

Dr. Keast: Yes, that estimate of obesity related lymphedema is based on Statistics Canada data (2007 - 2009) indicating that 3.1% of Canadians are morbidly obese (BMI>40). Given that obesity rates are increasing, the figure quoted may be an underestimate. Based on our own clinical data, 45% of our lymphedema patients were morbidly obese.

Dr. Towers: We then need to look at the prevalence in those with chronic venous insufficiency who are not also obese. Often the two conditions co-exist. How do we estimate those figures?

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Dr. Keast: General estimates in developed countries put prevalence of venous leg ulcers at 1 – 2%. Prevalence of nonulcerating venous disease is not clear with estimates ranging from 1 – 60%. Our patient characteristics show that there are multiple overlapping co-morbid conditions.

In particular, there is significant overlap between obesity and venous disease.

This means that counting venous disease patients separately risks double counting.

We are still working to refine this estimate by going back to our data to see if we can separate out those with venous disease without obesity.

Dr. Towers: The other categories of persons with lymphedema that are unrecognized and untreated are those with disabilities and who are chair bound. This includes spinal injury, multiple sclerosis, stroke and cerebral palsy patients. According to the Canadian Survey of Disability (2012) there were almost 275,000 persons in Canada with mobility issues.

Even if we conservatively estimate that only 30% of those have mechanical lymphatic insufficiency, we could add 83,000 to our total lymphedema prevalence figure.

Dr. Keast: When discussing immobility issues, we are referring primarily to lower extremity chronic edema related to dependency and failed calf muscle pump activity. Many assume that if the leg were elevated the edema would resolve. This has not been the case in patients seen in our rehabilitation outpatient clinics. Chronic edema ultimately leads to chronic low levels of inflammation and in turn permanent lymphatic dysfunction. Certainly, people who are chair bound are at higher risk, but fixed ankles and altered gait patterns lead to poor calf muscle pump activity.

This in combination with other factors often leads to chronic edema/lymphedema.

Unfortunately, there are no published prevalence data for lymphedema associated with mobility related disorders. We can find data on the prevalence of these conditions in the Canadian population but we are forced to estimate the percentage that has chronic edema/lymphedema. For example, we know that there are 100,000

Chronic edema related to venous disease Undetermined Morbid obesity related 570,000 Cancer related 155,000 Disabilities/chair-bound 83,000 Surgeries non-cancer 40,000 Primary lymphedema 20,000 Mean incidence of cancer related lymphedema from systematic reviews

All cancers: 15% Breast cancer: 18% Melanoma: 18% lower extremity 3% upper extremity Gynecological: 20% uterine, cervical, vulvar Genitourinary:10% prostrate, bladder, penile Sarcoma: 30% Head and neck: 4% Reference: Shaitelman et al 2015

*USA up to 10 million LE (Stanford) extrapolated to Canada = 1 million

living with multiple sclerosis (Multiple Sclerosis Society), 86,000 with spinal cord injuries (Stats Canada), 14,000 with spina bifida (Wikipedia – 0.4/1000 live births in developed countries) and approximately 750,000 post-stroke patients (Public Heath Agency of Canada). In this case, we used a conservative estimate of 30% of those with mobility issues. More research is needed in this area. Our centre will be undertaking a prevalence study in our spina bifida patients.

Dr. Towers: We need to add the primary lymphedemas. The pediatric figure commonly quoted is 1:6000 live births.

However, many manifest in adulthood. The international medical experts Weissleder and Shuchhardt (2008)2 state that the figure is far more important than this, based on epidemiological studies from Germany.

If we use the rate that these experts teach, we would put the figure at 20,000 for Canada and—again—this is probably an underestimate. Unless the primary lymphedema manifesting in adulthood is unilateral, it is very difficult to differentiate it from secondary lymphedema.

Then there are the surgeries other than for cancer. This includes a percentage of those with multiple abdominal surgeries, orthopedic procedures such as hip and knee Spring 2017

replacements, and surgeries involving vein harvesting, such as bypass surgeries. Add a conservative figure of 40,000 for that group.

Dr. Keast: Non-cancer related surgery was a co-morbid condition in 61% of our clinic’s lymphedema patients. It was second only to venous disease. We did not include surgical procedures that would be unlikely to be related to lower extremity chronic edema/ lymphedema. Hip and knee surgery as well as pelvic or abdominal surgery were included.

Vascular procedures in the lower extremity were also included. Here again there is a risk of double counting. As previously mentioned our patients had an average of 7.3 co-morbid conditions. We are really seeing a population with complex lower extremity edema with multiple risk factors. Lymphedema in the upper body is counted in the primary and cancer related lymphedema.

Dr. Towers: There is a recently published paper by Moffatt, Keeley et al (December 2016)3 where they attempted to estimate the point prevalence of lymphedema in Derby,

So, if you then use as your denominator the total population, which includes healthy persons, I think that you underestimate the problem. They do state that among the chronic edema patients that were in the community, 60% had experienced cellulitis within the previous 6 months. I think that this is important information about the morbidity related to chronic edema.

England. They examined people in hospitals, clinics, community nursing services and those attending general practices and report a point prevalence of 3.93 per 1000 population. However, they used a pitting test (and many cases are nonpitting), they did not assess the whole lower limb, and they examined a population that was institutionalized or using community services.

Dr. Keast: Population-based prevalence studies are always fraught with some danger.

Was the population studied representative of the whole population or is the condition of interest over or under represented? In the Moffatt et al study, prevalence rose to 28.75 per 1000 for persons aged 85 or older. Thus, to extend the data to the overall Canadian population we would need to determine if the population demographics in Derby were statically similar to Canadian demographics. Nevertheless, the study does provide another piece in the puzzle of the prevalence of chronic edema/lymphedema. The data about episodes of cellulitis are important.

Here again this data may be a little difficult

2017 National Lymphedema Conference Montreal • October 27-28 A bilingual conference co-hosted by the Canadian Lymphedema Framework and the Lymphedema Association of Québec in collaboration with the McGill University Health Centre and Concordia University.

KEY DATES

KEYNOTE SPEAKERS • Dr. Tobias Bertsch (Germany) Obesity and lymphedema • Dr. Alex Munnoch (Scotland) Surgical options • Dr. Isabelle Quéré (France) Pediatric lymphedema SPECIAL FEATURES • A 3.5 hour pediatric lymphedema interactive workshop • A full day community nurses training module

April 1 • Abstract submission deadline • Online registration opens June 30 • Early bird registration rates end • Last day to reserve Omni Hotel early bird rate

resenting key topics related to CHRONIC EDEMA and LYMPHEDEMA: P Obesity, Lipedema, Pediatrics, Self-Management, Exercise, Compression, Measurement, Skin Care, Surgery, Wound Care, Psychosocial and Clinical Services. www.canadalymph.ca

Spring 2017

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It is very important to note that these are preliminary discussions about prevalence, with actual figures to be elucidated with future studies.

to interpret, as it appears to be self-reported.

Our experience is that cellulitis is over diagnosed in emergency departments.

There are many conditions that may produce a hot swollen painful leg. Deep vein thrombosis is usually ruled out but a ruptured Baker’s cyst may cause similar symptoms.

The most common mimicking conditions are stasis dermatitis due to uncontrolled edema or acute lipodermatosclerosis.

Cellulitis is such a burden on local emergency departments in our region that patients are seen the next day and followed in a separate cellulitis clinic.

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Dr. Towers: So, putting the conservative figures together, we get to 870,000 chronic edema/lymphedema cases PLUS those with chronic edema related to venous problems who are not in any other category. Such prevalence estimates should be viewed as representing ranges rather than precise figures. However, we probably have 1 million or more Canadians impacted.

I think that the importance of this relates to finding health care resources for prevention and treatment. Within our health care system and our society we need to try to prevent the conditions that cause chronic edema/lymphedema in the first place. A large percentage of the adult population should be wearing professionally fitted leg medical compression garments for prevention. Certainly, this refers to anyone who is obese, who has chronic venous insufficiency, and anyone with reduced mobility from whatever cause. And, we need to advocate for programs that encourage exercise. Since it is proven that exercise is

the best medicine for both prevention and treatment of almost every chronic illness, why are exercise programs, gyms and rehabilitation pools not more accessible, and subsidized by our health care system?

Dr. Keast: I agree. We know the risk factors for chronic edema/lymphedema. Patients need to be screened and those at risk need a coordinated program that focuses on helping persons at risk to self manage.

The elements of such a program would include meticulous skin hygiene, appropriate exercise, compression therapy with funding for garments, and counselling and assistance with weight control. There is a need for research into post-operative compression therapy for procedures which have demonstrated a risk for lymphedema. Chronic edema/ lymphedema is a complex problem in need of coordinated prevention and treatment. LP A full set of references can be found online at www.lymphedemapathways.ca.

Spring 2017

Clinical Perspective

Skin characteristics of lymphedema

Clinical detection of breast cancer related lymphedema

By Carol Armstrong

FIGURE 1a

W

Skin lustre hile many cancer survivors do not At rest, edema-free skin has a “matte� develop lymphedema, for those finish. Edematous skin sometimes develops who do, lymphedema can have a profoundly a sheen, which becomes increasingly shiny negative impact on quality of life. Early as swelling progresses and especially when identification and intervention can improve 1 the skin is maximally stretched by fluid. These lymphatic function , slow, reverse, or halt subtle changes to the lustre are usually in the progression of lymphedema2, and reduce combination with increased pallor, stretching its physical, mental and economic burdens of the polyhedral texture lines and to both individuals and society3. decreased vein visibility.

Careful assessment of skin characteristics can identify Wrinkles Skin colour changes associated with and fine Edema-free skin in Caucasians edema formation, and lines indicate has a translucent marbled palette prompt patients to take edema-free of pink, blue and white tones, appropriate action. These skin. which give individual skin colour. early skin signs may present In other ethnicities the individual along isolated areas within the tones may not be as clearly demarcated, limb or trunk, not necessarily the whole quadbut the veins are usually still visually rant at risk. They precede pitting edema, skin identifiable. thickening or subcutaneous fatty deposition As edema forms, skin takes on a uniform associated with progression of lymphedema. pallor in Caucasians and paler skin tone in non-Caucasians, so that the translucency Skin polyhedral pattern The top layer of the skin (epidermis) is composed of polyhedral shapes between pores, accomodating multidimensional skin stretch without tearing. In edema-free skin, these shapes are slack and may give the appearance of fine wrinkles, especially with age (Figure 1a). As fluid starts to accumulate in the skin, these changes may be detected: polyhedral shapes are stretched further apart, and may be more difficult to identify; FIGURE 2a FIGURE 2b the skin has less or no slack, and there are Pallor presentation medial pathway, fewer or no wrinkles. veins obscured.

Carol Armstrong BA, Registered Massage Therapist, is trained in MLD/ CDT (1993), and Advanced Garment Fitting (2004) and practises comprehensive lymphedema care and compression garment fitting in Victoria, BC. She offers free public education sessions on lymphedema awareness on a monthly basis, and can be reached at carmstrongrmt@telus.net.

Spring 2017

Edema-free polyhedral pattern hand.

FIGURE 1b

Hand v.early edema, veins obscured, loss of marbling, decreased tendon definition. and marbling effects are lost and veins gradually become obscured.

Based on common nodal excisions, either alone or in combination with radiotherapy, early edema-related arm pallor occurs most frequently along the medial lymphatic pathway from the mid-bicep to the midforearm (Fig 2a and 2b). When related to certain chemotherapy regimes, edema presents as generalized turgid arm swelling related to capillary permeability rather than one specific lymphatic pathway. For some patients, early pallor may first present in the hand, back of the elbow, or mid-forearm to wrist on the side at risk.

Skin-fold thickness A normal edema-free skin fold is 1-2 mm wide. Thickness varies slightly based on body fat. The lightest of pinch pressure is used to pick up the thinnest skin fold possible (not the underlying tissue) and compared to the other limb. The greater the skin swelling, the thicker the skin fold will be. In later stages of Ly m p h e d e m a p a t h w a y s . c a 9

FIGURE 3a

FIGURE 3b

3a: Arms show more uniform pallor and loss of vein visibility towards the elbow in a very early stage of lymphedema.

3b: A slightly more advanced lymphedema, showing the more pronounced flexion ceases at the wrist, complete obscuration of the veins at the wrist, decreasing vein visibility along the forearm, and uniform pallor.

lymphedema, it is not possible to pick up the skin at all (positive Stemmer sign). Skin folds can be assessed over the knuckles, back of the hand, elbow and inner arm”.

Skin indentations Indentations in edema-free skin are usually very narrow, approximately 0.5 mm wide, and disappear within 15-20 minutes of removal of the indenting item (e.g., clothing, jewellery). When edema exists, the indentations are broader (1-3 mm wide), appearing as paler “welts” with a more noticeable raised white border, and reddish indentations where the item is cutting into the skin (Fig 4a). The greater the swelling, the deeper and more enduring the indentation Limb contour If right and left limb contours are not generally symmetrical and there is no obvious explanation of difference based on medical history and limb dominance, swelling may be a factor.

Compare arm contours when the elbows are bent and pointed towards the practitioner, or FIGURE 4a

Deepened indentation in edema.

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

knuckles when the hands are made into fists.

Patients can self-check by looking at their reflection. Tendons and bony prominences have less definition as edema increases.

Patient-reported symptoms Combining skin assessment with patient reported symptoms can validate the patient’s experience. In the very early stages of swelling, patients may report vague, subjective symptoms that frequently get dismissed until more serious physical discomfort ensues4. We have learned that these subjective feelings are valid: breast cancer patients who experienced such FIGURE 5a

5a: Hand on right shows altered knuckle contour, loss of polyhedral pattern and loss of tendon definition. Hand on left - polyhedral pattern and tendons are still visible.

FIGURE 5b

5b: Loss of tendon definition (r). symptoms in combination with other limiting factors, such as reduced range of motion, stiffness of joints or impaired sensation, were at higher risk for developing lymphedema5.

Initially the limb may not have any visible swelling, but to the patient may feel “heavy”, “achy”, “uncomfortable”, “prickly” or simply “different from the other limb”. When there is actual visible swelling, the skin may feel “full”, “tight” or “restricted”. Other symptoms may include reduced sensation, pain, burning,

cording, or reduced range of movement on the affected side. Clothing and/or jewellery may feel more snug/tighter than usual.

Persistent swelling Swelling or areas of “puffiness” that persist for more than two months after surgery/ radiation in the affected quadrant should be evaluated. The longer that fluid remains in the region, the more viscous it becomes, with concomitant inflammation and greater risk for secondary skin and tissue changes2.

Areas at risk for swelling If lymph nodes have been excised or radiated, the areas that would normally be drained by those nodes need to be monitored closely.

For example, if the right axillary lymph nodes are affected by surgery and/or radiation, the region at risk includes the right trunk front and back from the breastbone to the spine and from the navel to the collarbone, any remaining breast tissue on the right side, the right arm and hand.

Breast and truncal edema Breast edema may be very local or it may involve the whole breast, often with reported tenderness. The pores are often stretched apart (peau d’orange), the skin may have a uniform pallor or appear “pink” if radiated, and there may be marked indentations from bra seams.

Truncal edema may involve the area just below the armpit, and/or extend to the back, the front chest wall and lower rib cage, and the upper one-third of the back of the arm.

Seroma is a fluid filled space that can sometimes form following breast cancer surgery. It frequently resolves on it’s own. If not, residual seroma located on the chest wall or remaining breast tissue is usually replaced by fatty tissue, and if the seroma is in the armpit, it can take on a harder encapsulated texture. Seroma is considered a higher risk factor for development of lymphedema7,8.

FIGURE 4b

Unaffected side minimal indentation.

Apparent delayed onset of swelling Swelling may appear immediately following cancer treatment or many years later. When patients report the latter, close inspection can determine whether development is new, or if in fact there are significant secondary changes including thickening and subcutaneous fatty Spring 2017

FIGURE 6

Checklist for fluid assessment in skin - Compare to the unaffected limb Polyhedral pattern Fine lines and wrinkles Pores Lustre Colour/tone Veins Skin-fold thickness Indentations Limb contour

Breast on right shows pores stretched apart—peau d’orange, larger contour.

Lack of stretch mark striations present in unaffected breast on left of photo.

Summary Close evaluation of the skin reveals much qualitative information and in combination with patient-reported symptoms, can facilitate

present present normal matte marbled visible thin marked similar

discussion about interventions for managing early swelling. For some patient populations, taking early action decreases swelling, restores normal skin characteristics, and reduces progression. In others, such action mitigates the degree of chronic progression.

These patients may still have isolated areas of swelling and secondary changes within the quadrant at risk rather than the whole quadrant, but these are largely manageable through exercise, compression, self-massage and management of body weight. I have seen such effects of good management repeatedly

Recovery from

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m m m m m m m m m

absent absent stretched apart sheen m shine uniform pallor obscured thickened enduring “white welts” different

in my clinical practice; good results have been maintained for at least three years as long as patients remain diligent about self-care.

Studies such as “The Optimal Lymph Flow” (TOLF)6 will hopefully encourage a change in focus from treatment oriented to proactive risk reduction. With better education practices concerning lymphedema detection and management, fewer cancer survivors are likely to experience this condition. LP A full set of references can be found online at www.lymphedemapathways.ca.

THE VITALITY OF THE SEA

deposition present, indicating that the swelling has been present for some time.

Another consideration is that with ageing, many people gain body fat in the inner upper arms. Skin inspection can reveal whether increased limb girth is predominant on the side at risk for lymphedema, or present in both arms.

m m m m m m m m m

www.wearease.com 1-866-251-0076 12 L y m p h e d e m a p a t h w a y s . c a

Spring 2017

Exercise

Exercise and lymphedema

The evolution of exercise research and protocol for lymphedema

By Karin Johansson

I

n Western countries cancer treatment is one of the most common causes of lymphedema.

In particular when both lymph node surgery and radiotherapy are given, the incidence is 30-50% both in the upper limb after breast cancer treatment and in the lower limb after gynecological or prostrate/urological cancer treatment. During the last decades the cancer survival rate has increased significantly, leaving many survivors with impairments such as lymphedema.

For a long time, exercises for lymphedema patients were recommended to be “remedial” which in the 1970’s and 1980’s, mostly included different range of motion movements of the limb, performed slowly and without weights. These recommendations were most likely based on the theory that simple obstruction of the lymph flow by lymph node surgery was the sole cause of cancer related lymphedema. It was believed that if cancer survivors performed vigorous exercises, the lymph production would increase and thereby increase the limb volume. Therefore,

movement therapy should only be used to support the venous and lymphatic flow in the bandaged limb, meaning muscle contractions without increased blood flow1.

Another historical reason for not performing vigorous exercise might have been based on the doctor’s experience that patients had claimed that lymphedema developed after (for example) lifting a heavy object, and therefore doctors suggested that patients not do any heavy lifting. Specific recommendations were even given not to carry anything heavier than two litres of milk. At that time recommendations were very easily established without any evidence. Unfortunately, that still happens quite often today. When a new medicine is introduced, it has to be vigouresly tested step by step on animals, healthy subjects and patients before it is allowed into the market, but advice and recommendations are never tested that way and are most often not evidence based.

For breast cancer patients, the recommendations were to avoid heavy work with the arm and not to “overload” the lymphatic

Karin Johansson RPT, PhD is a lymphedema specialist, Department of Oncology at Skåne University Hospital, Lund, Sweden; Associate professor, Dep of Health Sciences, Division of Physiotherapy, Lund University. Editor of the National Lymphedema Guidelines in Sweden, her research focuses on early diagnosis and physical activity for prevention and treatment of lymphedema following breast cancer treatment, and measurement of health related quality of life for lymphedema patients.

Spring 2017

system and “to be careful.” Furthermore, this was recommended not only to lymphedema patients but also as prevention for lymphedema development. This was the advice I was taught in the early 1990’s, to give to the breast cancer patient post surgery. Hearing this advice from professionals created fear in the patients about potential development of lymphedema and promoted the idea that inactivity was beneficial.

Due to this, many breast cancer patients became physically inactive with the arm on the affected side even before lymphedema developed (Johansson et al.2002)19. In that way they most likely slowly reduced strength and circulation to such a low level that even a small exertion, which normally would have been of no damage, may have suddenly provoked an impairment.

Another reason for the recommendation of inactivity during the 1990’s was due to the introduction of chemotherapy as an adjuvant cancer treatment causing side-effects like fatigue that, in those days, were “treated” with rest. Later we learned that fatigue should instead be treated with physical activity and exercise. Around the same time in the late 1990’s, both patients and physiotherapists, based on their experience, started to question the exercise restrictions that had been set previously. In the early 2000’s evidence came forward supporting exercise (done a couple of hours per week at medium level) as preventive for breast cancer2. Some years later it was also shown that physical activity after breast cancer diagnosis could reduce mortality3.

L y m p h e d e m a p a t h w a y s . c a 13

Later on, there were similar findings of the benefits of exercise prevention for other cancer diagnoses, like prostate cancer4 and colon cancer5. These findings, that the survival rate was dependent on exercise level, had a strong impact on the exercise restrictions for lymphedema patients, showing that patients with breast cancer related lymphedema may actually be risking their health by being less physically active than recommended.

At this time it was also found that a high Body Mass Index (body weight correlated to height) was a risk factor for development of lymphedema. Though we know that the reduction of body weight requires a change of diet, increased physical activity is also an important component. This finding also increased the need for lymphedema patients to exercise.

We have come a long way in our understanding of the lymphatic system and how it works. In particular we have learned that the obstruction theory described above is a far too simple and causal explanation6. Rather, theory today is based on the assumption that the lymphatic system and lymphedema may

actually benefit from exercise.

Already in 2000 Susan Harris, PT and professor at the University of British Columbia, Vancouver, published a paper on Dragon boat racing among women treated for breast cancer, showing that a two-month muscle strength training program followed by an eight-month competition season did not increase the risk of developing lymphedema8.

In other, later studies; no risk of developing lymphedema by vigorous exercise was revealed. In one study, among breast cancer survivors who undertook a supervised progressive weight-lifting program for a year, only 7% developed lymphedema in the arm compared to a control group (no exercise) where 22% developed lymphedema9. These results point out that exercise may even serve as prevention.

Even more studies have been published to show that an already established lymphedema A program of

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does not get worse by vigorous exercise10.

However, it is very important to note that weight bearing exercises with the aim of increasing strength should be progressive— meaning that if the patient had not previously been exercising, the exercise should be started at a low level and slowly increased and supervised by skilled professionals checking for signs of increased swelling. On the other hand, a lot of studies show that cancer patients can do vigorous exercise during cancer treatment and benefit from it. The more these findings are applied in practice within health care the less will be the risk that cancer survivors are totally sedentary during a long period of cancer treatment.

Such behaviour will most likely also reduce the incidence of lymphedema over time.

However, not all exercises are about weight lifting. Swimming has been tested in several studies11, 12, 13 with the idea that the pressure of the water may increase the effect of the exercise on the lymph flow. This benefit has not yet been proven, however, most likely because some of the exercise programs that were tested were only performed once a week, which is too low a frequency to be able to show an effect after any exercise. The higher exercise frequency of 3-5 days of training per week is probably the key to the success that Nordic pole-walking as been found to be effective for lymphedema volume reduction14. The benefit may be due to increased capillary supply providing a larger surface for capillary filtration and conductance7.

Exercise like yoga and Qigong are very popular among cancer survivors and have been found to improve sleep quality and overall quality of life, as well as reduce fatigue15. However, very few studies of their effect on lymphedema have been published.

A recent yoga protocol for breast cancer related arm lymphedema16, including compression treatment and slow joint movements, appears very similar to what was recommended in the 1970’s by the Vodder school. Breathing exercises have been added; however, deep breathing has never been observed to increase lymph flow, except during high force inhalation in healthy Spring 2017

subjects17, and is not considered to produce any clinical effect on lymphedema.

There are very few studies published concerning leg lymphedema. This is most likely due to the fact that it is much more difficult to obtain reliable comparative measurements for leg lymphedema where a healthy side cannot be guaranteed. In cancer related leg lymphedema nodes are often taken and radiation is often given to both sides.

This remains a challenge for researchers. Still, there is no reason to believe that exercise for patients with leg lymphedema should be performed in any other way than exercise for patients with arm lymphedema. It is also reasonable to assume that water-based exercises like standing and walking on the bottom of the pool would be beneficial to leg lymphedema as the water pressure around the foot at depth is even higher than that provided by most compression stockings.

Not all lymphedemas are secondary or caused by cancer treatment or other traumas.

Some are primary, resulting from faulty lymphatic vascular development. However, it is likely that the principals of exercise for secondary lymphedema may also be applied to patients with primary lymphedema, starting with low levels for non-trained persons accompanied by slow progression and regular check ups with a health professional on the lymphedema status.

Finally, there is the question of wearing or not wearing a compression garment while exercising. A recent review found that there is no consistent evidence for wearing compression during exercise. There may be a small preference for wearing compression but on the other hand no (statistical) deterioration was found when patients were not wearing compression. The conclusion was that the compression should be applied on an individ-

Weight-bearing exercises should be progressive, with the aim of increasing strength. ual basis, that is, it is better to refrain from using compression than to refrain from exercise because the compression is not comfortable.

(Singh et al 2016)20 In summary, patients with lymphedema in the arm or leg can be encouraged to regularly perform vigorous exercise, starting at a low level with slow progression and with no upper limit as long as there is no deterioration noted. The type of exercise is less important than the involvement of large muscle groups of the affected limb and a high frequency of training. And remember, exercise at any level is better than none. LP A full set of references can be found online at www.lymphedemapathways.ca.

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L y m p h e d e m a p a t h w a y s . c a 15

Research Perspective

Parents raising children with primary lymphedema Preliminary study results

Understanding the lived experiences of parents raising children with lymphedema

By E. Radina, K. Kawamura, M. Martin, S. Rich, L. Clark, L. Ramsey and A. Oddo

P

arents of children with primary lymphedema (LE) have received limited research attention despite their vulnerability for experiencing feelings of helplessness, frustration, and grief as well as higher levels of stress and depression (Kepteotes, Keatinge, & Stone, 2010; Todd,

2015). Parents’ experiences of excess stress can lead to negative mood and child behavioral problems (Miodrag, Berke, Tanner-Smith, & Hodapp, 2015). Thus, our study aimed to gain in-depth understanding of the lived experiences of parents. Data was collected

Principal Investigator: Dr. Elise Radina is Professor and Chair of the Department of Family Science and Social Work at Miami University (Oxford, OH, USA).

Kaylie Kawamura, BS, Family Studies, Miami University; Mary Martin, Social Work, Miami University; Sarah Rich, Nursing, Kent State University – Geauga; Lindsay Clark, Biology, Miami University; Lauren Ramsey, Biology, Miami University; Alyssa Oddo, Social Work, Miami University.

using semi-structured interviews with parents (N= 22) of children (mean age 9.65 years) with LE from seven countries. Recruitment for parent participants is currently open. Here we present preliminary results, which were also presented at the 2016 National Lymphedema Network Conference in Dallas, TX. Participant description The majority of the participants were between the ages of 25 and 44, white, and female.

Participants were primarily from the United States. Participants from outside the US were from the United Kingdom, New Zealand,

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Spring 2017

Male baby born 6 weeks pre-mature with lymphedema in lower-extremities.

Australia, South Africa, Ireland, and Canada.

The majority of the participants’ children were between 1 and 12 years of age with an overall range of 1 to 18 years. Twelve of the children were female and 9 were male. 52.38% of the participants’ children were diagnosed before they were one year old. 28.57% of the participants’ children were diagnosed between 1 and 4 years of age. The remaining children were diagnosed between the ages of 5 and 15. The majority of the participants’ children were affected in their right and left legs, or other parts of their body, including genitals, both feet and hands, or their full body.

Methods Parents completed measures of their child’s symptoms, activities of daily living, and psychological distress as well as of their own psychological stress. Semistructured interviews included their child’s story of lymphedema, parental challenges, ways in which they have advocated for their child, how they explain LE, how they teach their child to explain LE, and personal experiences of support and coping mechanisms. Parents were interviewed by undergraduate research assistants. After the interview, the interview was transcribed and reviewed by two coders. For each transcript, coders identified major themes and compared these themes across all of the transcripts to identify overarching themes.

Results The most frequently reported LE symptoms were swelling, firmness, tightness, and heaviness in the affected limb. As a result of LE, the majority of parents reported that their child’s regular social and leisure activities were

affected. In relation to their LE, parents also reported that their children most frequently experienced frustration, sadness, and irritation. Parents reported that they personally experienced worry, frustration, sadness, and fear most often related to their child’s LE. Throughout the interviews, four major themes were identified. First, there is an overall lack of knowledge from medical professionals on lymphedema, which can lead to feelings of frustration and experiences of misdiagnosis. Another theme throughout the interviews was the presence of financial and insurance struggles. The third theme was having difficulty finding and keeping therapists.

Lastly, support was a major key factor when it came to living with lymphedema. LP If you are interested in volunteering for this study, please contact the Principal Investigator, Dr. Elise Radina, at RadinaME@MiamiOH.edu.

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

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L y m p h e d e m a p a t h w a y s . c a 17

Letters to the Editor

Listening to

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__ __ __ __ ______ ______ ______ ______ ______ __ ____ ______ ______ ____ ______ ____ ______ ____ ____ ____ ____ ____ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ____ ________ ____________ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______________ __________________ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ ____ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______________ ____ ______ __ ______ __ ______ __ __ ______ ______ ______ __ __ __ ____ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ______ ______ ______ ____ __ ____ ______ ______ ____ ____ ____ ______ ______ ______ __________ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ __ __ ______ ______ __ __ __ __ ______ ____________ __ ______ ______ __ __ __ __ __ ____ __ __ __ __ __ __ __ __ __ ______ ______ ______ ____ ____ ______ ______ ____ ____ ____ ____ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ____ __________________ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ __ ______ ______ ____ ______ __________ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ __ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ ____ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ______ __ __ __ __ __ __ ____ __ __ __ __ __ __ __ __ __ ______ ______ __ __ ____ ______ ____ ____ ____ ______ ____ ____ ____ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ____ ______ __ ______ ______ ____ __ __ ____ ____ ______ ____ ____ ____ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ __ __ ______ __ __ ______ __ ____ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ______ ____ ______ ____ ______ ____ ____ ____ ____ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ____ __ __ __ ______ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ____ __ ____ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ____ __ ______ ______ ______ ______ ______ ______ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ ______ ______ ______ ______ ______ ______ ______ ______ __ __ __ __ __ ______ __ __ __ __ __ __ ______ __ __ __ __ __ __ __ __ __ __ __ ______ ____ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ______ ____ ____ ____ ____ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ____ ____ ____ ____ ____ ____ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ____ ____ ______ __ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ ______ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ ____ ____ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ __ __ __ __ __ __ __ __ __ __ __ __ __ ____ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ ______

Response to Letters to Editor...

Maria Asdourian, BS; Cheryl Brunelle, PT, MS, CCS, CLT; Meyha Swaroop, MS; Hoda Sayegh, BA; Melissa Skolny, NP, MSHA, Alphonse Taghian, MD, PhD guidelines provided low-level (Levels 3–5) or inconclusive evidence, and only four Level 2 studies demonstrated a significant association between lymphedema and these risk factors.

Skin infections and infection-inflammation were among the most clearly defined risk factors for the incitement of lymphedema.

Furthermore, the risk conferred by presumed We agree that the focus of this topic should risk-increasing exposures was low in many not be on debunking the myths of such of the studies, regardless of the presence precautions, but on carrying out rigorous of well-established lymphedema risk factors research that may better elucidate the (e.g. axillary lymph node dissection) in the effectiveness of these guidelines. To reiterate cohorts. Presently, the proportion of patients the conclusion presented by Ferguson et undergoing sentinel lymph node biopsy (lower al­—“Although we cannot affirmatively state that risk-reduction practices have no effect on risk) for the assessment of lymph node status in clinically node-negative breast cancer is arm swelling, we hope to generate evidence increasing, and this low-risk group of patients that brings reasonable doubt to burdensome guidelines and encourage further investigation now comprises approximately 80% of this population2, 3, 4. into non-precautionary behaviours and the 1 risk of lymphedema” . Our intention was not As it stands, randomized controlled trials aimed at assessing the risk conferred by to draw sweeping conclusions with the goal these exposures would not be feasible to of dismissing all precautions and changing clinical practice without further consideration conduct, thus the need for prospective and similar high-level analyses examining these and detailed research, but to suggest that it is time to add to the research base in order to guidelines. The pathophysiology of BCRL is ensure that any guidelines we give to patients elusive and it is unclear as to how far we are from truly grasping the etiology and genetic are well substantiated. underpinnings of the condition. If the success It’s important to note that there is of clinical care and treatment was dependent limited high quality evidence that supports upon whether an intervention proved to have or refutes these precautionary measures. absolutely no risk, we would be greatly lacking A comprehensive review published by our in medical and surgical interventions that team examined 31 original research articles exist in cancer care. There is risk associated on the risk of air travel, ipsilateral arm blood with radical and conservative surgery, pressure readings, skin puncture, cellulitis, and extreme temperatures on the development chemotherapy, radiation therapy, hormonal therapy, etc., and it will be near impossible to of BCRL. We found that the majority of the demonstrate no risk from an intervention that studies lending support to precautionary We thank Dr. Judy Nudelman and Louise Haley for their comments and hope we can establish a thoughtful dialogue regarding clinical practice patterns in regards to precautionary recommendations for Breast Cancer-Related Lymphedema (BCRL).

may be associated with lymphedema. It is the nature of medicine and clinical research.

We are not advocating for a no-risk position among all patients with no consideration of their pre-existing risk factors, and we certainly do not suggest that practitioners use the atrisk limb for any and all medical procedures.

What we hope for is a reevaluation of current guidelines pending further research and careful dialogue. It is likely that patients at low and at high risk of BCRL should not be given the same precautionary guidelines, and we hope that with progress in the research base, there can be a move towards a riskadjusted approach in the application of these guidelines. Many of these precautions are based on anecdotal evidence and clinical wisdom rather than high level evidence.

Although clinical experience is very important, we should do more than providing anecdotes of patients developing lymphedema after, for example, venipuncture, with no mention of pre-existing risk factors. Increasing the level of fear and distress in the lowest risk patients will do little to improve their quality of life and will not advance scientific research.

We have taken great care to avoid overstating any of our conclusions, and we hope that other groups will consider our results to be a platform on which to carry out additional research and discussion.

Again, our goal is not to do away with current guidelines, but to further our current knowledge base and advocate for continued generation of high-quality studies that can inform clinical practice through thoughtful discussion. We welcome everyone with an interest in furthering the knowledge base of this field to continue researching these precautionary guidelines and publish their findings in an evidence-based, peer-reviewed scientific journal. This will allow us to foster collaborative discussion as opposed to establishing a dichotomy in the study of lymphedema risk reduction guidelines, and make strides in identifying and implementing appropriate educational interventions to improve patient quality of life. LP A full set of references can be found online at www.lymphedemapathways.ca.

L y m p h e d e m a p a t h w a y s . c a 19

Sponsored Editorial

Teamwork

to better manage lymphedema

Case study outlining the importance of a multidisciplinary approach

By Anne-Marie Crépin, Naïla Nehmé, and Nathalie Côté Lymphedema is a condition for which treatment requires time, expertise and commitment from both the patients and the professionals treating them. So a multidisciplinary team was formed to offer optimal therapy to a patient with lymphedema, during the decongestion and maintenance phases.

Background A patient aged 76, suffering from spinal stenosis, has been wheelchair bound for 10 years. Because of his limited mobility, he developed an undiagnosed bilateral lymphedema of the lower extremities, and weighed 135 kg. More specifically, his feet were swollen to the point that he could no longer wear shoes.

Having contracted a bacteria that caused an inflammatory cellulitis, he was hospitalized for two months and treated with antibiotics.

During his hospitalization, he had open wounds on his right leg and his limb was blue-black. At this point, lymphedema was diagnosed.

His feet were swollen, with strong fibrosis on top.

Decongestion A medical prescription recommended a home follow-up for skin care, the intervention of an orthotist, the application of Comprilan® short stretch bandages on the lower limbs and Combined Decongestive Therapy (CDT). The nurse from the local community service center (CLSC), after attempting to reduce edema, decided to contact Anne-Marie Crépin, a therapist specializing in CDT. A total of 23 CDT treatments on both legs were administered over a period of more than seven months, twice a week. After the decongestion phase, a volume reduction of the feet of over 20% was observed.

Maintenance In preparation for the maintenance therapy, various members of the multidisciplinary team met to assess the patient’s overall situation in order to propose therapy solutions for the maintenance phase.

The patient’s needs and lifestyle were taken into consideration.

Nathalie Côté, a nurse and lymphology specialist and Nancy Bonneau, (both from BSN Medical), offered comprehensive training to the team on the various compression options available and helped select the most appropriate garment for the patient’s needs. Nathalie and Nancy provided clinical and technical support and ensured that everyone was comfortable with the use of JOBST® products.

Naïla Nehmé, an orthotist, determined the choice of fabrics according to the medical prescription and the stage of lymphedema.

The option of JOBST® FarrowWrap® seemed ideal as this short stretch compression wrap allows for both day and night wear.

It offers the possibility to easily adjust the garment throughout the entire duration of the therapy, allowing for a better fit and optimal results. In addition, this wrap system provides firm and comfortable compression. Naïla also used a JOBST® Elvarex® foot glove to maintain the pressure at the toes. Edema is known to slip in areas where the pressure is lower, often at the extremities of a compression garment. “With the addition of the foot glove, we can ensure that any edema at the toes is controlled”, Naïla said.

Delivery of garments and follow-up The orthotist and the multidisciplinary team helped the patient with the fitting the following week and verified that he was comfortable with the garments. Each member of the team was present to assist the patient, answer his questions and help him become more familiar with all the products used. At the patient’s request, Anne-Marie continues with a follow-up every two weeks and administers manual lymphatic drainage to prevent fluid accumulation in the legs, since he is immobile.

Teamwork: a winning combination!

The success rate of such a practice is a factor of success of the therapy. Open communication and involvement of each party brings clear value. Ultimately, the patient is well taken care of and is committed to self-management, which leads to better tolerance and therefore, better adherence to prescribed treatment.

Anne-Marie Crépin, certified Dr. Vodder School-International therapist specialized in Combined Decongestive Therapy (CDT), Naïla Nehmé, Orthotist-Prosthetist, Actimed Orthopedic Laboratories and Nathalie Côté, nurse and lymphology specialist, BSN Medical.

The views expressed in this report are those of the advertiser. Inclusion does not constitute an endorsement nor reflection of the views and opinions of the Canadian Lymphedema Framework and its Editorial Board.

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

Spring 2017

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Advocacy

The need for patient group advocacy

Steps to creating an effective advocacy plan

By Ryan Clarke

T

he ability to effectively advocate is a fundamental requirement in the not-forprofit health sector as organizations like the Canadian Lymphedema Framework and the seven different provincial lymphedema associations seek to represent the interests of their membership, whether it be with key decision-makers in government or other stakeholders that have an impact on their issues. This article will review the importance of patient group advocacy, as well as outline the essential elements needed to engage in advocacy.

We begin with a definition of the word itself. According to the Canadian Oxford Dictionary, advocacy is verbal support or argument for a cause, policy. I typically describe it as telling your story to someone, through various means, with the express purpose of compelling that person to do (or not do) something. It is a process that almost always takes time to realize tangible results and the way it is done is very personal according to your own style and comfort level.

So why is advocacy important? Well, quite simply, the squeaky wheel gets the grease. Health officials in government react to those credible patient groups who can most effectively bring their issues to the forefront of the public agenda. The truth is if

you don’t engage, some other organization will and you will miss the opportunity. It’s also important because governments will do what they want (or they’ll do nothing) unless groups intervene in the process. So from the outset, it should be clear; choose not to advocate for what you think is important, and I guarantee the result—nothing will happen. But take a chance and engage, and you just might be successful.

Patient groups need to ensure coordinated engagement in health issues at both the national and provincial levels, as well. Although health care is primarily the responsibility of the provinces, an organization like the Canadian Lymphedema Framework has a critical role to play in representing the unified voice of patients, emphasizing equity and consistency in the provision of health care services.

There are three steps to create the foundation of an effective advocacy plan and as you will see, each step requires focus to ensure you don’t lose sight of your objective.

1 Key messages. The first thing you need to do if you are going to advocate to anyone about anything, is determine what you need to say, either in writing or orally.

These are your key messages. I recommend

Ryan Clarke, LL.B. is founder of Advocacy Solutions, a business committed to providing a voice to organizations and individuals through the development and implementation of impactful advocacy strategies. He can be contacted at ryan@advocacysolutions.ca or (905) 891-0311.

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

three key messages that explain the salient points of your issue in easy to understand language. Each of those key messages should consist of 25 words or less and be written in a clear, compelling, concise (focused) and consistent manner. They represent the essence of what you want a decision-maker to remember and respond to around the issue presented to them.

To ensure even greater focus, I suggest patient groups craft their three key messages to answer the following questions: i. What is the problem, challenge or issue? Or what are we here to talk about? ii. What is the impact of the problem?

Or why is this problem important? iii. What would it look like if we solved the problem? Or what’s in it for the decision-maker?

Lastly, make sure that the language you use in your key messages is focused on how you want the recipient to perceive your issue. Use subjective language, not just facts, to frame the problem in such a way that people will be drawn in by the words you’ve chosen.

2 Advocacy tools. Once you’ve decided what you want to say, you need to determine the means or vehicles through which you should deliver your three key messages.

These advocacy tools represent the core of any effective advocacy plan. Anything a patient group uses to communicate with Spring 2017

members, supporters or people outside the organization is a potential tool. Examples include texts, emails, in person meetings, websites, newsletters, petitions, postcards, news releases and, of course, social media.

Using your advocacy tools, you need to create what is known as a layering effect, to layer each tool on top of the next in a very focused manner in an attempt to elevate the noise level around your issue. You don’t want to just randomly start trying everything you can think of to get your key messages in front of decisionmakers. Instead, determine which advocacy tools you are able to use or need to develop, and then begin to link them together in a way that focuses on systemic layer building.

It’s also important to give some thought to developing advocacy tools specifically for grassroots action. Social media and various e-advocacy programs

are good examples of ways in which members or supporters can become engaged at the local level with their elected representatives, for example. It’s an important component you’ll likely want to build in to the various advocacy tools at your disposal.

3 One ‘ask’. This is the goal of any advocacy plan, to be able to ask a decisionmaker for the one thing you need them to do, not a list of what you want from them.

It is particularly at this stage that most organizations engaged in advocacy fail to be focused enough in articulating what exactly they need. Instead, they present a wish list of all of the things they want from the person to whom they are advocating. It may sound contrary to what most of us believe, but in advocacy, the less you ask for and the more specific you are, the more likely you are to succeed.

Social media and various e-advocacy programs are good examples of ways in which members or supporters can become engaged at the local level.

Your ‘ask’ also needs to be tangible, something that can be measured, and this is where you cannot be too focused. For example, if your ‘ask’ is to have a piece of legislation amended to include the word shall instead of may, making an action required instead of optional, this is both significant and very specific. That’s the level of precision that every ‘ask’ should seek to encompass. Both the Canadian Lymphedema Framework and the various provincial lymphedema associations have a strong commitment to advocacy. I am confident that they will continue to invest the time and effort to build their respective advocacy capacities to best serve their members. LP

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Helpful Suggestions

Hints and Tips Caring for your stockings Compression stockings should be hand washed daily. Do not wring out the stockings or put them in the washer or dryer. Press water out by placing them between layers of towels.

Hang or lay flat to dry. Refer to the instructions in your product brochure for more specific instructions about the care of your stockings. Note: Lotion can break down the fibres in your stockings, so it is best to moisturize your legs at night.

Donning and doffing If you have problems putting on or taking off your compression stockings, contact your garment authorizer or vendor.

They may suggest stocking aids to help you, or a family member may have to

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assist you. Wear rubber gloves when putting on or taking off the garments, and keeping your finger/toenails trimmed can help to prevent tearing or holes.

Source: Alberta Aids to Daily Living Website

day, small efforts can have a positive impact on your lymphedema management. Sometimes we all need a fresh start to get back on track!

Starting fresh Spring can be a time of renewal so take the opportunity to change the way you care for your lymphedema.

Practice positive self-talk and create a self-care routine that you’ll be able to maintain. Whether it’s learning how to self-bandage, or exercising for 15 minutes

Patient approved I have recently purchased a bandage roller, which I use every day, and find to be an excellent tool. I located this one on-line at the Lymphedema Depot website and feel the price of $19.95 plus shipping to be worth every penny!

Linda Gimbel, Stettler, Alberta LP

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Spring 2017

Research and Community

Did you know?

Keeping the lymphedema community better informed The American Lymphedema Framework Project (ALFP) has launched the ALFP Research Network as part of their ongoing effort to keep the lymphedema community up-to-date with the latest news, developments and discussions related to lymphedema care and treatments.

Subscribers to the ALFP Research Network will receive a weekly email digest containing articles and news releases from leading researchers and institutions within ALFP, in addition to resources from across the healthcare landscape.

The ALFP Research Network weekly email digest will include a summary of the scholarly activity in the lymphedema community. Subscribers will not have to log in to a website to participate. New developments and other important information will come directly to their inboxes.

Additional features • Subscribers will have a place to ask and answer clinical practice questions and will have opportunities to participate online or by email, and to choose to make discussions available across multiple Network associations and beyond • Subscribers receive updates on new publications authored by their association colleagues. The ALPF Research Network

automatically delivers a current and complete snapshot of the work of the lymphedema community • Highlights of the latest lymphedema news and resources are broadcast to related associations • Subscribers receive and can quickly scan the latest articles from journal feeds and other knowledge sources chosen by them.

To make the ALFP Research Network a reality, ALFP has partnered with Sosido, an online knowledge exchange community for physicians, nurses, pharmacists, researchers, techs and other healthcare professionals.

Sosido uses innovative technology to connect and filter knowledge through communities of trusted colleagues. Register for Sosido by checking www.alfp.org/ LP

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Education Education

Canadian and International Events Jun 21-24, 2017 The 7th International Lymphoedema Syracuse, Italy Framework Conference will feature themed plenary sessions on chronic oedema in obesity, oedema and wounds, self-management and service models. Highlights will include LIMPRINT research and observational study results. n www.2017ilfconference.org Sep 18-22, 2017 Barcelona, Spain

26th World Congress of Lymphology.

Hosted by the International Society of Lymphology (ISL). n www.lymphology2017.com

Oct 27-28, 2017 National Lymphedema Conference will Montreal, Quebec be co-hosted by the Canadian Lymphedema Framework and the Lymphedema Association of Quebec. This bi-lingual conference will feature international Key Note speakers and be simultaneously translated into French. A special pediatric morning workshop and full day nurses training module are part of the event. n www.canadalymph.ca/conference Oct 29- Aqua Lymphatic Therapy certification Nov 1, 2017 course with Dorit Tidhar.

Montreal, Quebec Certified Lymphedema Therapists are eligible to register. n www.infolympho.ca/ courses-and-workshops

Letter to the Editor... na, It was a great ple asure to the facult talk with y dinner you durin at the NL g to Germa N. On th ny I had e flight the oppo “Pathwa rt u nity to re y s ” . I wa ad s impres magazin sed. I ha es that tr ve severa y to l master th to serve e balanc dif ferent in re g a a d ct er group is of grea s. Your m t interest a g a to zi n p e atients a therapists s well as and med to ical docto rs .

I loved re ading yo ur Editor’ wrote ab s M e s s a ge out some where yo of the to u during ou pics we d r evening iscussed ta lk like ten I apprecia nis or do te the art gmas. icle of Jo exercise. achim Zu This is exa ther abo c tl ut y the sam tr y to exp e, as I pa lain to pa tiently tients. B topics in u t a lso the s your mag urgical azine are So congra of great tulations interest. for this o utstandin Dr. Tobia g work! s Bertsch , Foeldi Cli nic, Germ any

The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality.

Platinum Sponsorship

Gold Sponsorship

Hello An

We would love to hear from you...

If you would like to drop us a line, please do so at: canadalymph@live.ca

The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts.

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

Silver Sponsorship

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.

26 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

Spring 2017

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