Pathways Winter 2019/2020 (Volume 9, Issue 1)

Canada’s Lymphedema Magazine

Pathways

Ac Pathcess w Onli ays ne See pag e4

WINTER 2019/20

Empowering patients and professionals

A new paradigm

Dutch Best Practice Guidelines

Practical exercises Conference highlights

10 Years

STRONG 2009–2019

NOUVEAU...

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une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways 2019-12-06 11:11 AM

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Fax: 888-434-5347

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Editor’s Message

Passing on the torch Entering the next CLF decade

T

he Dutch modern approach towards managing a chronic condition is more holistic. Dr. Robert Damstra uses the correlation of other chronic conditions, like diabetes, to make a case for patient selfsufficiency, where the patient monitors their swelling and makes adjustments like increasing activity or avoiding weight gain accordingly.

The focus is on quality of life and having the patient actively involved and empowered.

Although it may sound simple, this approach challenges the traditional regimes and skills of both patients and health professionals.

The end result is that patients should know more about their treatment and learn the skills to be independent of their therapist.

Robyn Bjork and Heather Hettrick are remarkable physiotherapists and educators with the International Lymphedema and Wound Training Institute who challenge our thinking to a paradigm shift; where all edemas are on a lymphedema continuum and represent either lymphatic insufficiency or failure. It supports the efforts of the International Lymphoedema Framework and the Canadian Lymphedema Framework to promote recognition of the term lymphedema/ chronic edema.

Many past articles in this magazine have focused on the importance of exercise in a lymphedema treatment plan. Thanks to Marize Ibrahim and Angela Yung, two physiotherapists/lymphedema therapists from Montreal, who have provided some practical decongestive exercises to follow. If you are

a patient living with arm lymphedema, we encourage you to clip the article and post it on your fridge or bathroom mirror to remind yourself to work this into your routine.

A similar exercise handout for people with leg lymphedema will be featured in a future issue of Pathways.

Our researcher profile features Dr. Mei Fu, a well-known nurse and scientist who is also a Pathways Editorial Board member. We thank her for sharing her interesting research and perspectives with us.

Patient inspirational stories are featured regularly in Pathways, however this issue’s story is different in that it focuses on an entrepreneur and how he strives to make life easier for his wife living with lymphedema, through his great inventions. First the bandage roller and now the dryer for compression garments. We should all be so lucky to have an Ernie Funk in our lives!

We thank the members of the CLF Education Working Group for providing us with a great 2019 national conference review.

There were many great speakers who were so willing to share their knowledge and experience. The highlight for many was the keynote speaker, Dr. Machteld Huber, from the Netherlands, who spoke about the new definition of health. Dr. Anna Towers sat down with her for an interview at the conference.

We look forward to sharing that article in our next Spring issue of Pathways.

On a final note, although I will remain in my role as Pathways Editor, I am retiring

The focus is on quality of life and having the patient actively involved and empowered.

from all other Executive Director responsibilities with the Canadian Lymphedema Framework, at the end of December 2019. It’s been quite a journey from the early days in 2009 when a few founding members struggled to get the CLF established. This year marked our 10th anniversary and we are very proud of how far we’ve come. I’ve treasured all the amazing people I’ve met along this journey who were so instrumental in building the CLF into one united voice for Canada. After 10 years, it’s time to pass on the torch to new leadership with a fresh outlook and new ideas. You can read about Katerina Ilievska, the new CLF Executive Director on page 26.

In the meantime, readers won’t see much change, as I will still be connected to you through the magazine as Pathways Editor.

I am excited to share new ideas and developments for Pathways in the coming year. LP

Visit the CLF Health Professionals Website Portal

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Anna Kennedy

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• Lymphedema related case studies by fellow professionals • PowerPoint slides to support your educational efforts • Select articles that are useful in your practice, such as research reviews • Patient photographs specific to lymphedema to enhance your presentations • Assessment tools to help your practice www.canadalymph.ca

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Contents

Dutch best practice lymphedema guidelines based on the chronic care model

Winter 2019/20 n Volume 9 Issue 1

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 Editor Anna Kennedy

Accounting for the patient and their challenges in treatment.

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A new paradigm for diagnosis and treatment of edemas The Endothelial Glycocalyx Layer

Advancements in the link between swelling and the lymphatic system.

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

CLF 2019 National Conference highlights

Education, Research, Partnerships.

13

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 C.Leighton-Lamy, J.Raditz

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

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Manitoba-grown

A passion for innovation and a heart full of support.

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Practical exercises for upper extremity lymphedema:

To incorporate into a self-management programme.

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Researcher Profile

Mei Fu

mHealth facilitates real-time detection and prediction of lymphedema.

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ILF Outcome Measures Study

Report of Canadian results.

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

TO ACCESS PATHWAYS ONLINE

Login information: www.canadalymph.ca/pathways-online User name: Pathways Subscriber Password: Paradigm Wi n t e r 2 0 1 9 / 2 0

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Clinical Guidelines

Dutch best practice lymphedema guidelines Based on the chronic care model

Accounting for the patient and their challenges in treatment

By Robert J Damstra

L

ymphedema is not a diagnosis but a clinical feature and considered a chronic condition. Proper diagnosis including patient health profiling according to the bio-psychosocial model (International Classification of Functioning, Disability and Health (ICF)) and a dedicated treatment program following the chronic care model, are essential for a rational, effective and efficient approach for all patients (See page 6: Editors Note).

Lymphedema care differs from how patients with another chronic illness such diabetes mellitus are treated. Diabetic patients, as an example, are taught to measure their own blood glucose levels and to adjust the insulin dosage accordingly, to stay active and manage their weight. When there are no complications, patients in the maintenance phase can manage themselves and just visit the diabetes nurse or doctor occasionally.

Patients with lymphedema, however, may for many years receive mono-disciplinary treatments from different healthcare providers and lack a network of care. Many patients are unaware whether they are in the initial or maintenance phase of treatment and often lack skills to be independent of their therapist and perform self-management.

The Dutch guidelines for lymphedema1 are based on new concepts of care for

diagnosis and provides tools for a modern approach regarding a chronic condition.

International Classification of Functioning, Disability and Health (ICF) The ICF is a bio-psycho-social model, which recognizes several domains for measuring and documenting functioning and disability, and offers a more holistic approach toward a patient. The original framework provides a universal language to assess a person’s functioning and disability and facilitates international quantifiable comparisons of

disability-related data. In the Dutch guidelines we focus more on the qualitative aspects of ICF, regarding interaction among the domains of body function, body structure, activity, and participation. These are subsequently related to contextual factors as environmental and individual factors2 (Figure 1 below).

The functioning and quality of life of patients with a chronic condition have been shown to improve when the ICF model is used.

Working with the ICF, healthcare providers need to communicate in more interdisciplinary fashion and empower the patient in their

FIGURE 1

Health Condition

Body structures and Functions

Activities

Personal factors

Participation

Environmental factors

The interaction between the different aspects of state of health and external and personal factors3.World Health Organization, International Classification of Functioning, Disability and Health: ICF. 2001, Geneva: WHO.

Robert J. Damstra, MD, PhD works as a dermatologist at the Nij Smellinghe Hospital Drachten (Netherlands) in a team with six dermatologists, two surgeons and many paramedical specialists. In 2009 he obtained his PhD with the thesis “Diagnostic and therapeutical aspects of lymphedema” at Maastricht University. In 2005 he founded the Dutch Expert Centre for Lympho-vascular diseases (ECL), which now includes an outpatient clinic with thousands of patients and an in-patient unit for 12 patients that provides interdisciplinary diagnostics, operative and conservative treatments. He was chair of the first (2003) and second (2014) Dutch lymphedema guidelines working group. The third guidelines are planned for 2023. The ECL is a member of the European Reference Network (ERN) in the VASERN-group (www.vascern.eu), via which expert centres all over Europe collaborate to enhance cross-border healthcare, improve quality of care, provide information for patients in Europe and encourage multicentre research.

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Complex cases with comorbidity

High risk cases

70-80% of people with a chronic condition

Self-care

treatment program, in all domains. That is different than offering lifelong regular handson treatment by a therapist.

Chronic Care Model In acute care, the focus is on healing and the scope is short-term or severe illness of brief duration. The Chronic Care Model (CCM) centers on preexisting or long-term illness with a focus on quality of life for the patient, and more independence from a therapist.

In the Dutch guidelines we focus more on the qualitative aspects of ICF, regarding interaction among the domains of body function, body structure, activity, and participation.

The model was initially proposed by Wagner4 in 1988 in response to the acknowledgement by health plans and provider groups that the care of patients with chronic illness required improvement. Evidence has shown that “usual care” is not effective for chronic condition management; sizable numbers of chronically ill patients are not receiving effective therapy, have poor disease control, and are unhappy with their care. Chronic medical care accounts for more than 75% 6 Ly m p h e d e m a p a t h w a y s . c a

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Great share of professional healthcare

e ar lc na sio es of Pr

The Kaiser Permanente pyramid as the model for chronic care within a network of care

Equal distribution of healthcare

Great share of self-care

of health care dollars spent in the United States, with approximately 125 million (45%) of the population faced with some type of chronic disease5.

In the CCM an active patient participates in his or her treatment, is empowered and self-effective. The therapist is more “hands-off”, offering a supportive approach and working within a network of care to share data, and use validated clinimetrics according to guidelines.

The patient is the center of the care process.

Care is organized according to a pyramid in a network of care; expert-centered and highly complex care is provided in small volume at the top and, when possible, most of the care is provided by a caregiver at a more regional/home base location together with the patient6. This approach has been shown to be effective in several other conditions such as diabetes7 and in the lymphedema guidelines in the Netherlands.

The Dutch guidelines for lymphedema In 2013, a working group was established, representing many professional organizations involved in lymphedema management (including dermatology, surgical oncology, radiology, psychology, physical therapy, dietetics, skin therapy), representatives from the Ministry of Health, insurance companies, and patient societies. The guidelines were based on scientific evidence, written to be cost-effective wherever possible and to include

the philosophy of the government regarding chronic care8. The new guidelines embrace the functional, patient-centered approach (ICF), focusing on early diagnosis and a comprehensive follow-up with tailored treatment and support. The use of validated measuring instruments in all domains is strongly advised.

In particular, the main influenceable risk factors for lymphedema, weight and physical activity, need to be systematically measured.

Literature on therapeutic management was assessed for meaningfulness, effectiveness and efficiency. A table was created on the options in the various treatment phases (See Table 1 on page 8).

Currently, the cost of all lymphedema diagnosis and treatment, including garments, are reimbursed in the Netherlands.

Photo: Institute for Positive Health (iph.nl).

FIGURE 2

The guidelines also fit into a new definition of health, based on the concept of positive health by Machteld Huber 9. She redefined health from an absence of disease towards an active model in which the patient adapts and self-manages with a chronic condition, focusing on mental, social and physical health and increasing resilience.

What does this mean for daily practice?

The new approach in the Dutch guidelines on lymphedema is challenging; requiring both traditional and new skills from healthcare providers working more in a network. Prevention Editor’s Note: Multiple systems exist for disease classification. The most commonly used International Classification of Disease or ICD (developed through the World Health Organization) codes for lymphedema are ICD9 and ICD10. Whether these codes are billable depends on the health system.

Further details on classifications can be found at www.lymphedemapathways.ca

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TABLE 1

Therapeutic options during initial and maintenance treatment phases according to the Dutch guidelines.

Therapeutical intervention

Secondary prevention

Initial treatment phase

Bandaging

X

MLD

X

Transitional phase

Maintenance phase

Exercise

X

X

X

Skin care

X

X

X

Weight control

X

X

X

Awareness

X

X

X

“Self management”

X

X

Garments

X

X

Learning self techniques

X

X

Operative in expert centre

X

after breast cancer treatment for example, is stressed with early documentation of weight, activity and volume. Consequently, patients who are used to a more traditional, long-term hands-on treatment program sometimes find it difficult to make the transition. The therapist needs to facilitate the process towards more independence.

From a therapeutic point of view, the guidelines make a stricter division between the prevention, initial and maintenance treatment phases. For this last phase, for example, Manual Lymph Drainage (MLD) is not indicated and the focus is on compression garments, exercise, weight monitoring and self- management. In general, the effectiveness of MLD has been under discussion for a long time. A recent study by Tambour et al10 showed no additional effect of MLD to an integrated breast cancer lymphedema program.

MLD as a hands-on modality doesn’t fit well into the new more hands-off treatment models.” In the Dutch guidelines it may be indicated to use MLD only during the first 6-12 weeks

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The new guidelines embrace the functional, patient-centered approach (ICF), focusing on early diagnosis and a comprehensive follow-up with tailored treatment and support. of the initial treatment phase and no longer.

Our patients feel more satisfied, because they can more easily leave the cancer phase and the events that caused the lymphedema behind them and focus on a new life. They better understand how to manage their lives and to cope with lymphedema, which does not rule their life but rather is a part of it and well-controlled. Mostly, patients visit the healthcare provider for biannual measurements of quality of life (e.g. ICF QoL11,12) weight, activity and

volume. Furthermore, advice is given according to the outcome of the measurements and new, tailor-made flat knit garments are provided.

Using this newer approach, patients feel more confident because they know what they have and what they can do to experience an adequate quality of life. They are monitored twice a year if possible and, in case of a setback, they know where to find their therapist/healthcare provider for a short, new initial treatment phase. Consequently,

in the maintenance phase they are independent, self-effective and forward-looking. For this new approach, the education of healthcare providers needs to be modified towards more integrated care, risk stratification, training on influencing behavioral change in the patient (e.g. motivational interviewing) and new techniques more suitable for self-management. LP A full set of references can be found at www.lymphedemapathways.ca

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Research Perspective

A new paradigm for diagnosis and treatment of edemas The endothelial glycocalyx layer

Advancements in the link between swelling and the lymphatic system

By Heather Hettrick and Robyn Bjork Introduction Although edema can result from a variety of conditions, medications or other contributing factors, it is now understood that all edema is lymphedema through a spectrum of lymphatic insufficiency1.This article will highlight the latest evidence supporting this paradigm shift by looking at the new understanding of hemodynamics at the Endothelial Glycocalyx Layer, and the associated links between the lymphatic and integumentary systems. Further, it will explain how this information is relevant to clinical practice to help you differentially diagnose and manage lower extremity edema.

New lymphedema paradigm One of the most significant recent changes regarding lymphedema is a more refined explanation of fluid hemodynamics impacting our historical understanding of Starling’s Law. Previously, it was thought that 90% of fluid moving from the blood to the interstitium was reabsorbed back into the venous end of the capillary, yet the lymphatic system was only responsible for managing 10% of the fluid load. The new paradigm of the Endothelial Glycocalyx Layer (EGL) as the

gatekeeper of fluid filtration from blood capillaries explains how there is only diminishing net fluid filtration across the blood capillary bed and no reabsorption at the venous end; 100% of all interstitial fluid is reabsorbed by the lymphatic capillaries alone during homeostasis2-3.

Acting as a complex molecular sieve, the EGL precisely regulates fluid and protein movement through the capillary wall into the tissues4-6. Conversely, the EGL also prevents movement of proteins and fluid back into the venous side of the capillaries, even when interstitial hydrostatic pressure is increased, or tissue oncotic pressures remains higher within the blood capillaries. Thus, all fluid and proteins exiting the blood capillaries must be removed from the interstitium by the lymphatic capillaries alone. This has led to the new understanding that all edemas are on a lymphedema continuum and represent relative lymphatic insufficiency or failure1,7.

The system is either temporarily overwhelmed (transient lymphedema/dynamic insufficiency) or the system is abnormally developed, damaged or permanently impaired leading to the disease of chronic lymphedema (mechanical lymphatic failure).

Heather Hettrick PT, PhD, CWS, CLT-LANA, CLWT, CORE is a Professor in the Physical Therapy Program at Nova Southeastern University in Florida. As a physical therapist, her expertise resides in integumentary dysfunction where she holds four board certifications/credentials. She is faculty and Director of Wound Education at the International Lymphedema & Wound Training Institute.

Robyn Bjork, MPT, CWS, CLT-LANA, CLWT is Founder and President of the International Lymphedema & Wound Training Institute. She is a Physical Therapist who holds multiple board certifications in wound and edema/lymphedema management. Bjork is a featured speaker at national & international conferences and is dedicated to the advancement of Lymphatic & Integumentary Rehabilitation.

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Lymphedema pathophysiology The lymphatic system is analogous to the body’s sewer or recycling system. It is responsible for maintaining fluid homeostasis by managing interstitial fluid and mobilizing waste products (proteins, senescent cells, macromolecules, etc.).

The lymphatic system is also tasked with the absorption and transportation of lipids and fatty acids to the circulatory system, and transporting antigens, antigen-presenting cells and other immune cells to the lymph nodes where adaptive immunity is stimulated. Collectively, all components within the fluid transported by the lymphatic system are called the “lymphatic load”9.

Pathophysiologically, chronic lymphatic dysfunction or failure presents unique changes affecting the integumentary system. When the lymphatic load is not readily reabsorbed by the lymphatic system from the interstitial tissues, a pathohistological state of chronic inflammation results. Free radicals trapped in the tissues denature proteins and oxidize cell membranes attracting monocytes to the area that differentiate into macrophages.

These macrophages take in proteins through pinocytosis, which activates the macrophages to release cytokines. This, in turn, activates fibroblasts, which are stimulated to produce excess collagen8,9. Excess collagen formation causes connective tissue proliferation and fibrosis resulting in the thickened, fibrotic skin and wart-like projections (papillomatosis and verrucous) commonly seen with chronic lymphedema10. Additionally, other fibroblasts differentiate into adipocytes9. If treatment is not implemented, the chronic inflammatory process persists and the clinical presentation eventually can result in enlargement of the body part, thickened and fibrotic dermal and subcutaneous tissues, and other significant integumentary changes11.

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Disorders of the lymph system, whether systemic (macro-lymphedema) or localized (micro-lymphedema), produce cutaneous regions susceptible to infection, inflammation and carcinogenesis10,12-13. The inter-relationship of the lymphatic and integumentary systems is starting to become more readily appreciated as a functional lymphatic system is essential to an organism’s overall health given its role in fluid homeostasis, removal of cellular debris and mediating immunity and inflammation14.

The chronic inflammation resulting from lymphedema creates a region of cutaneous immune deficiency or a localized skin barrier failure. The associated abnormalities are called lymphostatic dermopathy, which is the failure of the skin as an immune organ10,12-13.

they will feel a heaviness or fullness in their limb before noticeable clinical signs.

Next, cradle and gently palpate the limb circumferentially as you slowly move up from the toes or fingers to the groin or shoulder. Manually identify areas that feel full, taught, edematous or fibrotic. Next, perform the Bjork Bow Tie Test in these areas (see Figure 1 below).

The Bjork Bow Tie Test is an expanded version of the Stemmer’s Test15,16. The Stemmer’s Test is performed by pinching the skin at the base of the second toe or middle finger17. If the skin can be lifted and pinched, the test is negative. A negative test does not exclude lymphedema. Thickened skin with fibrotic soft tissue changes will not

FIGURE 1:

Bjork Bow Tie Test

Negative Bjork Bow Tie Test

Positive Bjork Bow Tie Test

“Bow Tie” of wrinkles in Negative Test

Used with permission, courtesy Robyn Bjork and Suzie Ehmann

Because of this, alterations in skin integrity, recurrent infections (commonly cellulitis), venous dermatitis, diminished wound healing, various dermatological conditions, and even skin malignancies become more prevalent highlighting the inter-connectedness of the lymphatic and integumentary systems10,12-13.

Impairment or dysfunction in one system, leads to associated complications in the other.

Edema/lymphedema examination In combination with a comprehensive medical history and medical work-up, a physical exam of the edema and its characteristics is essential. This exam should include the following simple tests. First observe the extremity for subtle changes in contours indicative of edema and note any associated skin changes. Listen to the patient. Often, Wi n t e r 2 0 1 9 / 2 0

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lift and approximate when pinched and thus produce a positive test. The Stemmer’s Test is never falsely positive and leads to a definitive diagnosis of lymphedema9,17.

However, a limitation of the Stemmer’s Test is that, by definition, it is to be performed on the toe or finger only. And, based on the new paradigms of the microcirculation and definitions of lymphedema, all swelling can technically be diagnosed as lymphedema.

The question is, what type of treatment intervention should follow? Thus, the Bjork Bow Tie Test was developed to expand the application of a Stemmer’s typetest to any area of the body, as well as identify soft tissue changes, such as fibrotic tissue, that may warrant interventions to help remodel the soft tissue back to a normalized state15,16.

The new paradigm of the Endothelial Glycocalyx Layer (EGL) as the gatekeeper of fluid filtration from blood capillaries explains how there is only diminishing net fluid filtration across the blood capillary bed and no reabsorption at the venous end.

Unlike past perceptions of lymphedema presenting as gross swelling, marked fibrotic soft tissue changes or disfigurement, the subtle dermal changes are most important in early diagnosis and recommendations for care. To perform the Bjork Bow Tie Test, in one maneuver, gently pinch, roll and twist the skin between the thumb and pointer finger, noting quality of tissue texture and thickness. Healthy skin can be lifted and pinched, should feel slippery between the layers when rolled, and produce a “bow tie” of wrinkles when twisted.

Skin that tests positive will be thickened, less pliable, less able to be pinched and lifted, more difficult to twist, and produce limited “Bow Tie” of wrinkles. A positive test indicates signs of thickening and fibrotic tissue texture changes as a result of lymphedema-induced chronic inflammation. Figure 1 demonstrates how to perform the Bjork Bow Tie Test and the difference between a negative and positive test.

In addition to tissue texture changes, circumferences or girth can be measured using a cloth tape measure. For more precise measurement, new scanning technologies are emerging that scan a limb within minutes using an iPhone or iPad interface, create a 3-D avatar of the limb, as well as calculate volumes18. In addition, breast and truncal edema can be measured and quantified using a hand-held, pocket-sized moisture meter that objectively measures moisture content of affected versus unaffected areas19. This can assist in objectively identifying areas of lymphedema that are often subtle or subclinical.

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Lymphedema risk factors •C hronic venous insufficiency • P ost-thrombotic syndrome • V ein stripping or harvesting • S urgery (i.e. revascularization, TKA, THA, abdominal surgery, hysterectomy) •D ecreased mobility (aging, CVA, TBI, SCI, immobilization, etc.)

•O besity •C ongestive heart failure •C hronic kidney disease • T rauma • S cars •B urns • L ymph node dissection or removal • R adiation •C hronic wounds • R ecurrent cellulitis •C ongenital malformation of lymphatic vasculature • T umors obstructing lymphatics • T ravel or living in Lymphatic Filariasis endemic areas • P rolonged dependency of limb or other body part •H yperthyroidism •M edications with edema as side effect •C hronic skin disorders and inflammation • A rteriovenous shunt Adapted from Framework L. Best practice for the management of lymphoedema. International consensus. London: MEP Ltd. 2006:3-52.

Lymphedema diagnosis According to the new microcirculation paradigm, all patients presenting with swelling do in fact have lymphedema to some degree.

The lymphatic system may be overwhelmed resulting in a transient lymphedema (i.e., ankle sprain, CHF) or the system may be damaged leading to the disease of lymphedema. Even when no swelling is present, risk factors may be identified leading to a Stage 0 lymphedema diagnosis or subclinical lymphedema17. Table 1 lists many of the risk factors and comorbidities contributing to lymphedema. Early identification and intervention is key, and the contributing factors and underlying comorbidities must be addressed through comprehensive medical management in order to achieve best patient outcomes. Utilizing the components of Complete Decongestive Therapy in the context of the patient’s entire medical picture, will allow for safe and effective treatment. The authors are now referring to this management as Lymphatic and Integumentary Rehabilitation.

In the United States, the most common cause of lymphedema in the upper extremities is breast cancer20 and in the lower extremities, chronic venous disease is the most important predictor for the development of lymphedema21.

With respect to obesity, lymphatic dysfunction can occur with a body mass index greater than 50, and lymphedema may be universal in patients with a BMI greater than 6018. Various

other contributing comorbidities and co-factors may lead to lymphedema, and most clinical presentations of lymphedema are resulting from a combination of approximately seven comorbidities22. Data from the Canadian LIMPRINT study showed that the most common underlying cause of lymphedema in an outpatient wound clinic was venous disease, 72% of patients had a history of cellulitis, and almost 40% had an open wound23.

Conclusion Edema is a common and prevalent condition presenting clinically from mild to severe.

Looking at the presentation and quality of the edema, its characteristics (turgor, texture, pitting/ non-pitting), associated integumentary findings, combined with a comprehensive medical review of the patient will help in determining where on the lymphedema continuum the patient resides. Many edemas are transient, due to lymphatic insufficiency, which should fully resolve with proper medical management once the underlying cause or contributing factors have been identified and modified. For chronic lymphedema due to lymphatic failure, managing the underlying medical issues in combination with Complete Decongestive Therapy will help the patient manage this life-long disease. LP Photo: The Berkshire Eagle

TABLE 1

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

Congratulations to our 2019 Award Winners CAREGIVER OF THE YEAR: Richard Chaine AWARD OF EXCELLENCE: JoAnne Welton AWARD OF EXCELLENCE: Angie Pacheco HONOURABLE MENTIONS: Joy MacIntyre, Faudia Azeez, Keith Nixon, Carol Comm, Neil Heron.

Richard Chaine and Jay Rosenfeld, CAF Board Member.

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HEALTHCARE CENTRE

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Conference Review

2019 National Lymphedema Conference Education, Research, Partnerships

survivors to lead active lives. There are now 226 breast cancer survivor dragon boat teams in 25 countries.

Breakout sessions targeted to patients included the topics of psychosocial aspects of living with a chronic condition, relaxation therapy, nutrition and diet plus exercise sessions including yoga and aqua lymphatic therapy in the pool.

Toronto once again welcomed the National Lymphedema Conference and it’s more than 300 registrants, guests and speakers including patients, family, health care professionals and researchers. There was representation nationally from eight provinces, as well as international participation from the United States, the Netherlands, France, Poland and Austria. The Exhibit Hall had 25 companies displaying their products and services. This event was hosted by the Canadian Lymphedema Framework (CLF) and marked 10 years of their work in advocating for and raising awareness of lymphedema.

P

rior to the start of the conference, there were industry symposiums taking place as well as meetings of the committees of the CLF. All of the provincial lymphedema associations were represented and met to network and share ideas for awareness and advocacy. This was the last conference with Anna Kennedy as CLF Executive Director as she is passing the reins to Katerina Ilievska, (see page 25).

Day 1 – Dr. Pierre-Yves von der Weid, the opening speaker, provided an update on the ongoing research being done at the University of Calgary that looks at changes in gut lymphatics when chronic inflammation is present and how lymphatic dysfunction can affect the immune system, fat digestion and deposition, and be linked to other diseases.

His team is looking at how chemical mediators impact this process and will lead to a better understanding of these relationships.

Susan Harris, PT, the second plenary presenter, was one of the original breast cancer survivor dragon boat team members, and was involved in a study that broke the myth of limiting vigorous exercise after breast cancer surgery. She reported that this myth still persists. Citing numerous studies that support improved lymphedema outcomes with exercise groups, she encourages cancer

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Jan Weiss, PT, provided a workshop on differential diagnosis of vascular impairments and associated edema management. Swelling is the common symptom for chronic arterial insufficiency, chronic venous insufficiency (CVI) and lymphedema. Examples of quick assessment tips: • swelling, thin and hairless skin, wounds on foot and ankle may be Peripheral Arterial Disease (PAD) • swelling, tight skin, dark staining of skin may by CVI • swelling, stemmer sign positive, skin may maintain elasticity in the early stages may be lymphedema CDT therapists may be the first to see these signs and it is essential that physicians and therapists work together so that the proper tests and diagnoses are done for these patients.

Dr. David Keast provided an excellent review on how to assess chronic wounds. Often associated with venous impairments these require a large amount of time and resources to manage. He stressed the need to talk to the patient, understand the underlying cause of the wound and any other risk factors before touching the wound. The treatment plan: 1) first treat the cause 2) the wound and 3) the patient. He stressed the importance of compression therapy and reviewed the

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protocols of debridement, infection control and moisture for the skin to repair the barrier.

If the wound does not respond then further investigation is required.

Jean LaMantia, winner of this year’s poster presentation, explored nutritional recommendations in the management of lymphedema. She argued that nutrition has a role in lymphedema management and that Registered Dieticians could take a bigger role in lymphedema care. She suggests that weight management (rather than weight loss), a low salt and low fat diet, reducing long chain fatty acids, following an anti-inflammatory diet and not restricting fluids or protein, may be helpful.

Paediatric lymphedema occurrence is 1:6000 and is considered to be a vascular malformation. Dr. Catherine McCuaig of St. Justine Hospital in Montreal discussed the genetics of primary lymphedema and presented some case studies of infants with

primary lymphedema, describing the challenges of correct diagnosis; in implementing effective treatment, and the need for psychosocial support. She also highlighted the need for a multidisciplinary management team of physicians and lymphedema therapists for this group of patients.

Skin care is another component of lymphedema management and Dr. McCuaig gave an overview of best practices in this session. She stressed the balance in maintaining skin integrity and its barrier function. She reviewed a number of product characteristics, listing the positives and negatives of humectants, occlusives and emollients, highlighted the importance of neutral pH products with nothing abrasive or drying, and the need to keep the skin moisturized. She spoke of the cutaneous microbiome being in the skin as well as on the skin and the transdermal. Lymphedema causes stretching of the skin, which leads to inflammation of the surface and dryness

that creates a portal for bacteria into the body. Lymphedema also causes poor removal of fluid and debris from the skin, which can lead to more inflammation and poor immune response.

Day 2 – Dr. Machteld Huber, of the Netherlands who founded the Institute for Positive Health, began the day as the keynote speaker. She is challenging the World Health Organization’s definition of health, which has not changed since 1948, despite changes in life expectancy and a shift in disease, from being mostly infectious to more chronic. Healthcare is more disease care and she suggests it is in need of a philosophical update. Her research looked at people in Blue Zones of the world – places where there are many people who live well into old age – and it was determined that in these areas, people prepared their own food, ate fresh, plant-based food and only ate until they were 80 percent

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Essity, Medi, Juzo, Wellness and InBody were among the many exhibitors. satiated. They got plenty of exercise by moving naturally such as walking into their village regularly; made personal choices; and felt their life was meaningful even if they had a disease. They had a sense of coherence and comprehensibility and understood the situation in their own life. They felt connected and were not lonely. Dr. Huber noted that loneliness is more harmful to health than smoking.

Dr. Huber’s team created a self-assessment tool, which looks at six dimensions of health.

It is interesting that when given a choice, patients wanted to enrich or enhance areas where they scored higher but health care professionals wanted patients to focus on increasing their lower scores. It was found that when patients focused on enriching areas with higher scores, they scored higher in all areas. This suggested that this self reflection leads to a different conversation about what matters to the patient and is motivating, leading to small changes with positive effects to the whole person. Look for an interview with Dr. Huber in an upcoming issue of Pathways.

Berlange Persilus, a model and patient living with both KlippelTrenanury and lymphedema was the lunchtime speaker.

Her inspirational message was on body image and being proud of who you are, despite how you look.

Pamela Hammond of Princess Margaret Cancer Centre Lymphedema clinic provided two sessions on self-care including self-massage.

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patient education. In the past three years they have seen a 20% increase in referrals.

Dr. David Keast presented the Canadian results of the Outcome Measures survey.

The responses consistently focused on key areas of measurement including limb volume, quality of life, mobility, and episodes of cellulitis. He suggested that improvements in outcomes require an increase in patient and health care professional knowledge and improved reimbursement for treatment.

Dr. Anna Towers provided a workshop on palliative care and discussed the metastatic cancer patient and the difference in malignant lymphedema (tumour in the lymph system) vs. benign lymphedema. She stressed the importance of the palliative team and the need to continue Manual Lymphatic Drainage, exercise and bandaging and always keep the patient and family as part of the team.

There were a total of 15 oral abstract presenters with their work categorized in three different conference sessions: Research, Advocacy/International Work and Advancing Lymphedema Care. An additional 11 poster presenters displayed their work in the conference foyer throughout the conference.

Closing Plenary – Dr. Siba Haykal, a plastic surgeon at Princess Margaret Hospital, focused her presentation on surgery.

The different types of microsurgeries she performs include lymphovenous anastomosis

(taking a functional lymph vessel and directing it into a vein and thus avoiding the blockage above) and lymph node transplant (where a lymph node is removed from one area and transferred to another to stimulate lymphangiogenesis and lymphovenous interface).

Patient selection is important with typically only stage 2 or 3 patients who have been assessed, and staged being eligible candidates. She stressed the need for conservative treatment before surgery and the need for compression post surgery, as this is not a cure. There are pre- and postsurgical protocols that the patient must be engaged in for optimal results. The research into the long term results of these surgeries is still ongoing, but to date, Dr. Haykal has seen a mean reduction in fluid of 35 percent over one year and more importantly an increase in quality of life.

Amy Beaith, a patient, provided her personal story of having surgery for lymphedema, after a lifetime of increasing problems with leg lymphedema that started at age five and worsened through university and again after having children. Her lymphedema was seriously affecting her quality of life due to both increasing volume and increasing incidents of cellulitis. She committed to a pre-surgery protocol followed by surgery where she had 2.5 litres of fluid and fatty tissue removed from

Many thanks to the following conference sponsors:

With additional funding provided by: Alberta Lymphedema Network (ALNET) and the Lymphedema Research and Education Program

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Speakers, delegates, associations and organizers networking throughout the event. her leg, a lymph node transplant and a lengthy post surgical protocol. She continues to follow a compression protocol and in 18 months has only had one episode of cellulitis. She finds she is able to be more active and is enjoying life more.

Marize Ibrahim, PT from Montreal provided a case series report of patient followup of LV and lymph node transplant surgery where short-term preliminary data showed an increase in lymphedema volume percentage in three respective operated limbs. This stressed the need for larger sample sizes and longer followup

to determine the long-term effect of surgical interventions on lymphedema.

There was wonderful discussion throughout the conference amongst therapists, physicians, patients and families. There was so much to share and many thoughtful discussions took place. It was great having so many Provincial

Associations present so they could share their successes and strategies and to support the CLF in having a unified strong voice for lymphedema in Canada. Having opportunities to share strategies, advocate for and advance lymphedema care in Canada is so important, and this conference did just that. LP

Acknowledgements: The CLF wishes to thank the following members of the CLF Education Working Group who collaborated on this excellent conference review: Sandra MacDonald, Robert Harris, Ian Soles, Linda Menzies, Sonja Redden and Pam Hammond.

Thanks to JoAnne Raditz (far right) of the Lymphedema Association of Ontario (LAO) with the LAO Directors, for her photographs.

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Patient Perspective

Manitoba-grown

A passion for innovation and a heart full of support

By Claire Ann Deighton-Lamy

“ I do not think ‘80’s he helped design and patent (in both there is any thrill Canada and the US), sewer cleaning nozzles with his company at the time, Flushquip. that can go through In 2005, the Funks made the move the human heart from the city to Lac du Bonnet. In hindsight like that felt by the they reflected it was a good thing because inventor as he sees of the care they received from the community some creation of the brain e’ve all heard of Thomas Edison, when Sandy was diagnosed with breast unfolding to success.”

Alexander Graham Bell and Henry Ford cancer in 2009 and lymphedema shortly as some of the greatest inventors of all time. after. When you support a family member –Nikola Tesla Though not as famous, Ernie Funk is well or friend at a time of need, you look for known to his family, friends and community ways to make their lives more comfortable and as an inventor and an entrepreneur. easier to manage. People with lymphedema Although originally from a farm in rural and the people who support them daytime, and nighttime arm Manitoba, Ernie spent a large part of his understand the time, energy and sleeve compression garments. career in hazardous waste management. financial toll it can take on a person.

He is currently working on one He and his brother started a sewer and Ernie wasn’t any different. for leg garments. drain company, Bestway Compression bandOne of the most challenging Sewer & Drain. Other career aging is a large part of aspects of compression roles included general maintenance for lymphgarments is donning them. manager for a hazardous edema. The maintenance It can make an independent waste company, where he and care of the bandages person very dependent. Stay built the first waste transfer can be time consuming. tuned for the donning aid facility plant in Winnipeg In 2010 Ernie designed Ernie has in the works!

Arm Sleeve Dryer and several years at a and made a bandage After 54 years of marriage, drum cleaning business roller to help make it Ernie’s wife Sandy has seen in Selkirk. Ernie’s last easier for him and Sandy many projects come and go. I think the position before retiring was during her Manual Lymph words “don’t be at Miller Environmental as Drainage treatments and inventing!” have been a sales representative. night bandaging. heard once or twice.

Bandage Roller Although Ernie has not had Compression garments What is impressive any formal training, his passion for inventing require regular washing and depending about Ernie’s workwas apparent. Even though it was never on the time of year and the weather, drying shop is that he has patented, Ernie designed an environmentally garments overnight can be a challenge. invented the tools friendly disposal method for oil filters. In the In 2015, Ernie designed both a dryer for needed to manufacture his inventions.

That is the definition Claire Ann Deighton-Lamy, B.Sc., CPA, CMA is a custom fitter of a true innovator. at Diamond Athletic Medical Supplies Inc. She is a board member of the Ernie and Sandy continue to meet Lymphedema Association of Manitoba, acting as Treasurer. each day with a positive outlook and take Sandy and Ernie Funk live in Lac du Bonnet, Manitoba. on the challenges that come, together. LP

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Exercise

Remedial exercises for upper extremity lymphedema:

Information for patients

By Marize Ibrahim and Angela Yung

M

uscle contractions help with lymphatic drainage, which is why exercise is highly encouraged for patients with lymphedema. Try to incorporate exercise as part of your routine and daily practice to optimize your health and maximize benefits on your lymphatic system. When starting any exercise, start slowly, and progress gently as your body adapts to the regimen. Compression bandages or

sleeves should be worn during the exercises, if you already own them. Ensure you maintain good posture throughout each exercise! This is a modified exercise program that can be done easily during the day; however please speak with your lymphedema therapist to have the program customized appropriately for you and your needs. Remember, the exercises should not be painful.

Editor’s Note: The following are examples of exercises that could be integrated into educational information given to patients as part of a self-management programme.

The following remedial exercises, adapted from Casley-Smith principles1 can be performed in a seated position. Aim to do 3-5 repetitions of each exercise, which should take approximately 15 minutes. LP

1A bdominal breathing exercises – Relax your neck and shoulders; place one hand on your upper chest and the other on your stomach.

– Take a deep breath through your nose and feel the hand on your stomach move out (the other hand on your chest should not be moving).

– Breathe out slowly and as long as you can until you exhale completely (the hand on your stomach should move inwards).

2N eck range of motion exercises with deep breaths – Turn your head slowly to the right and as far as you can while you inhale, then return to center as you exhale.

Repeat to the left.

– Tilt your right ear towards your right shoulder as far as you can while you inhale and then return to center. Repeat to the left.

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3 Knee tucks with deep breathing – Do the abdominal breathing (exercise 1) and while you exhale, lift your right knee to your chest and relax.

– Alternate by bringing up the left knee to your chest slowly.

4 Shoulder shrugs – Lift both shoulders up towards your ears as you inhale. Exhale and pull your shoulders down as far as possible. End by relaxing the shoulders.

5 Shoulder blade squeezes – Keep your shoulders relaxed and down. Squeeze your shoulder blades together, hold 5 seconds and relax your shoulder blades and arms down.

6 Shoulder elevation/abduction – Lift both your arms forward as high as you can above your head with deep breathing. Exhale slowly as you bring your arms down.

– Lift both your arms to the side as high as you can above your head with deep breathing. Exhale slowly as you bring your arms down.

7 Elbow flexion – Bend your right elbow towards your shoulder as much as possible as you inhale. Exhale slowly as you straighten your elbow completely.

– Repeat on left side.

8 Grip/wrist circles – Make a fist with both hands, hold 5 seconds and then straighten out all your fingers.

Take slow deep breaths during movement.

– With both hands in a fist, make small circles in one direction and then the other.

Take slow deep breaths during movement.

9 Abdominal breathing – End your session with abdominal breathing outlined in step 1.

Marize Ibrahim, MSc, PT, CSLT and Angela Yung, BSc, PT, ALT are both certified lymphedema therapists working at the McGill University Health Centre (MUHC) Lymphedema Program in Montreal, Quebec.

A special thank you to Stephen Chan for the illustrations.

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Reference: 1) Casley-Smith, JR, Boris M, Weindorf S, Lasinski B (1998) Treatment for lymphedema of the arm – the Casley-Smith method: A noninvasive method produces continued reduction. Cancer: 83(S12B), 2843-2860

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Researcher Profile

Profile of a Researcher: Mei R. Fu

mHealth facilitates real-time detection and prediction of lymphedema Prof. Mei R. Fu (PhD, RN, FAAN) is an internationally and nationally well-known nurse, scientist and outstanding researcher and educator. She is a Professor with Tenure and The Barry Family/ Goldman Sachs Endowed Professor in Nursing at Boston College, William F. Connell School of Nursing. She is also a Courtesy Appointed Professor at New York University, Rory Meyer College of Nursing, a Fellow of American Academy of Nursing, Senior Fellow of Geriatrics at the Hartford Institute of Geriatrics and Fellow of New York Academy of Medicine. Her research incorporates qualitative and quantitative research methods, genomic and biomarker approaches and cutting edge technology as well as innovative behavioral interventions. Among her numerous awards and honors, in 2017 she was inducted into the Sigma Theta Tau International (STTI) International Nurse Researcher Hall of Fame for her lifetime achievements in and contributions to research and mentoring future researchers.

Q

Having been studying cancer-related symptoms and chronic illnesses for years, what do you think are the critical issues facing these areas right now?

Symptoms are subjectively perceived indicators of abnormal biological or physiological changes that may or may not be observed objectively. Being diagnosed with and treated for cancer is a devastating experience. What’s more frustrating is the unexpected suffering of symptoms from secondary chronic illnesses due to cancer treatment, such as lymphedema (i.e., an abnormal lymph fluid accumulation) or neuropathic pain. Lack of accessible, systematic and sustained ongoing evaluations

A

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of symptoms after cancer treatment and effective interventions remains critical issues faced by patients and healthcare providers.

For example, symptoms may indicate an early stage of lymphedema that constitutes only minimal changes in objective measures of limb volume increase. Thus, early detection of symptoms is essential for early detection of lymphedema. Despite its value in detecting early-stage lymphedema, the use of symptom assessment in clinical settings is still absent.

In addition, more research is needed to develop effective and accessible interventions for cancer-related symptoms. Technology such as mHealth is promising to address such critical issues in the area of symptoms and chronic illness.

Q A

How did you become involved in this line of research?

My program of research on lymphedema symptom science grew out of my passion and desire to understand how patients manage lymphedema in their daily lives, during my graduate study. Being a nurse who witnessed patients’ daily suffering from lymphedema, I felt it imperative to be able to help patients to relieve their symptoms.

Starting with qualitative inquiry to understand patients’ symptom experience supported

by NIH (F31 NR07851) and NYU Research Challenge Fund, I completed three descriptive phenomenological studies as the principal investigator (PI) to investigate the phenomenon of managing lymphedema in different ethnic groups, including white, Chinese American and African American breast cancer survivors. The publications based on these three qualitative research studies using a descriptive phenomenology method provided important evidence: (I) breast cancer survivors were distressed by the fact that no or limited education was given to them about lymphedema; (II) lymphedema symptom experience was described by breast cancer survivors as living with “a plethora of perpetual

discomfort”, which underscores the importance of lymphedema symptoms as an important patient-centered outcome; and (III) feasible self-care behaviors that were easy to integrate into daily routine were central to lymphedema management in breast cancer survivors’ daily lives. This work provided strong evidence that lymphedema symptoms and their psychosocial impact should be important patient-centered clinical outcomes. In addition, feasible self-management behaviors to promote lymph flow are key to reduce the risk and management of lymphedema. By providing evidence from patients’ perspectives, this body of work has changed the direction of research and clinical care on patientcentered outcomes and patient education on lymphedema risk reduction and will continue to inform effective ways of performing symptom assessment and implementing selfmanagement of lymphedema symptoms.

Q

In a recent study, your team examined the use of machine learning for the detection of lymphedema among breast cancer survivors. What are the major findings of this study?

What insights can it bring to guide future studies in similar areas?

In this study, we used a web-based tool to collect information from 355 women who had undergone treatment for breast cancer. In addition to sharing demographic and clinical information, including whether they had been diagnosed with lymphedema, participants were asked whether they were currently experiencing any of the more than 20 different lymphedema symptoms. We compared five different classification algorithms of machine learning: Decision Tree of C4.5, Decision Tree of C5.0, gradient boosting model, artificial neural network, and support vector machine. We also compared the algorithms with a conventional statistical approach, Youden’s method, which determines the optimal threshold for the symptom count based on the receiver operating curve. We

A

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found that all five machine learning approaches outperformed the standard statistical approach, and the artificial neural network achieved the best performance for detecting lymphedema.

The artificial neural network was 93.75 percent accurate, correctly classifying patients to have true lymphedema cases or non-lymphedema cases based on the symptoms reported. Thus, a well-trained artificial neural network classifier using real-time symptom reports can provide highly accurate detection of lymphedema.

Such detection accuracy is significantly higher than that achievable by current and often used clinical methods, such as healthcare providers’ observation of swelling. Symptoms assessment and management is the major focus for many chronic illnesses, such as cancer, chronic heart failure, HIV, or even chronic wound care.

Our study provided the proof of the concept for future research in the area of symptom assessment and management as well as chronic illnesses using machine learning approach.

Q

Did you come across any bottleneck in your career/research? What has been driving you to overcome these challenges and move forward?

My passion for lymphedema research has been sustained by my witness of the long suffering of patients and the positive impact of my research on patient’s quality of life. It is the desire of achieving maximized effectiveness of health care for patients that has motivated me to persistently explore innovative approaches to help patients. In my early qualitative research, I was moved by patients who were longing for the understanding of their suffering from healthcare providers and wishing more research could be done. Early in my career, the great challenge that I faced was that we needed to understand the biological pathway of lymphedema symptomology in order to advance the science of lymphedema symptoms. Supported by NIH (NINR Project# 1R21NR012288-01A, NIMHD Project# P60 MD000538-03) and ONS, as the PI, I and my investigative team have accomplished a much-needed prospective investigation to discover the biological pathway of lymphedema symptomology. We documented that lymphedema symptoms are strongly associated with increased limb volume; symptoms alone can accurately detect lymphedema as well as evidence for patterns of obesity and lymph fluid level. This

A

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research has provided the evidence that a diagflow and minimize inflammation. The-Optimalnostic cutoff of three symptoms discriminated Lymph-Flow digital therapy includes information breast cancer survivors with lymphedema from about chronic pain, lymphedema, diagnosis healthy women and a diagnostic cutoff of nine and measurement of lymphedema, lymphatic symptoms discriminated at-risk survivors and system, risk of lymphedema, digital therapeutic survivors with lymphedema. We also discovered lymphatic exercises to promote lymph flow, that lymphedema symptoms do have an and self-management. Patients can access the inflammatory biological mechadigital therapy using computer, iPhone, nism as evidenced by signifiPad, or other smart phones. icant relationships with Currently, we just completed several inflammatory a Randomized Clinical Trial Technology such as genes. This important (RCT) supported by a mHealth is promising research provides Pfizer Individual Learning to address such the foundation for and Change Grant critical issues in the (13371953 The-Optimal precision assessarea of symptoms Lymph-Flow ™) on digital ment of heterogeneity therapy for chronic pain of the lymphedema and chronic illness. and lymphedema symptoms. symptom phenotype Patients in the clinical trial and understanding the loved The-Optimal-Lymph-Flow biological mechanism of each digital therapy, especially the use of avatar phenotype through the exploration technology that demonstrates the compof inherited genetic susceptibility which is licated lymphatic system and illustrates the essential for finding a cure. Further exploration physiological functions of and detailed step-byof investigative interventions in the context of step instructions for each therapeutic exercise. genotype and gene expressions would further Conducting meaningful research that improves advance our understanding of heterogeneity of patients’ quality of life and reduce patients’ lymphedema symptom phenotype and make risk for lymphedema has been the goal of my additional contributions to precision health care. research. The emails and verbal expressions of Given that the internet grants the nearly gratefulness from patients have been the driving universal access to web-based programs, force for me to move forward until we find a a technologically-driven delivery model for cure for lymphedema and associated pain. health care is the ultimate goal to provide universal access to health care. My team and As the Editorial Board Member of I also faced the challenge to utilize web-andmHealth, do you have any words for mobile-based digital technology to deliver our intervention to help patients relieve their our readers/peers in the same field? lymphedema symptoms and reduce their More and more technology enhanced risk of lymphedema. To be able to garner the programs including artificial intelligence talents across disciplines at NYU, I endlessly will be incorporated in patient care. We need reached out and collaborated with faculty from to always remember that the patient is the NYU School of Medicine (surgery, population center of all these technology developments. health, pathology, and biostatistics), NYU It is important to involve our patients from Rusk Rehabilitation, NYU Tandon School of the very beginning in the development of any Engineering, NYU and the NYU Asian Center technology enhanced patient care program.

(CSAAH). Under my leadership, my team Finally, we should always remember that developed and pilot tested the web-based human connection is central for patient care The-Optimal-Lymph-Flow mHealth system and human connection is always essential for for lymphedema symptom assessment and finding a cure for illnesses. management. The-Optimal-Lymph-Flow mHealth Adapted with permission from AME Publishing system is a multi-language (English, Spanish Company - ” mHealth facilitates real-time and Chinese), patient-centered behavioral detection and prediction of lymphedema”. therapy focusing on behavioral strategies to lessen the symptom burden by promoting lymph mHealth 2018;4:53.

Q A

LP

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Research

ILF Outcome Measures Study (ILF-COM)

Report of Canadian results

By David Keast and Anna Kennedy Background Measurement of outcome in chronic edema/lymphedema management is subject to great international variation. This impacts on the following areas: • l ack of reimbursement of Complex Decongestive Therapy (CDT) and compression therapy • l ack of evidence to support the development of effective services • l ack of data to benchmark outcomes of care within and between services • l ack of standards for use in research • l ack of standardized outcomes to compare with other diseases and compete for care health resources The aim of the survey The survey had two inter-related aims: 1 To provide greater understanding of the national and international challenges of chronic edema/lymphedema outcomes in different countries 2 To provide greater clarity on the requirements for effective chronic edema/

lymphedema outcome measures that can be developed and validated for international adoption Methods Each national framework was invited to participate in the survey.

• P articipants included patients, clinicians, academics, health agencies and medical device industry representatives.

• T he survey was disseminated through the use of Survey Monkey and the results were collated for each country as well as an international profile supported by the ILF secretariat.

Sampling framework for Canada The Canadian Lymphedema Framework requested the assistance of the Provincial Associations through sending a Letter of Information containing the link to survey to all their networks and by posting a link to the survey on their association’s website. In addition the survey link was disseminated to the database maintained by the Canadian Lymphedema Framework.

David Keast, MD 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 (London). Dr. Keast is an Associate Scientist, Lawson Health Research Institute, Parkwood Institute Research. He is Co-director of the Canadian Lymphedema Framework and President of the World Alliance for Wound and Lymphedema Care.

Anna Kennedy spent 35 years in corporate training and communications before transitioning to the charitable sector. She is a Founding Member of the Canadian Lymphedema Framework, and worked as their Executive Director for ten years before giving up the helm at the end of 2019. She will remain as Editor of Pathways magazine. In 2012, Anna was awarded the Queen Elizabeth II Diamond Jubilee Medal in recognition of her leadership and contribution to the lives of Canadians.

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Important information provided for participants: 1 The survey was entirely confidential.

No personal information was collected other than country and whether the respondent was a patient or health care professional. For this reason ethics approval was not required.

2 The surveys had 14 questions for patients and 17 for professionals. It was estimated to take 15 minutes to complete.

3 The survey was open from January 15, 2019 to February 28, 2019.

4 The CLF team received the Canadian data and conducted an analysis.

5 The survey was also made available in French.

Results Overall internationally there were 8014 responses to the survey with 15% coming from specific countries and the remainder were listed as ”other”. From specific countries, 713 (8.9%) responses were from Canada.

Of these, 64.7% were completed by patients and 35.3% were from health professionals.

The following questions were answered by health professionals only. The distribution of the occupations of the health professionals is shown in Figure 1. Health professionals were evenly distributed between private and public sectors with a few working in both areas. The main types of facilities are shown in Table 1.

Over 90% indicated that they treated persons with chronic edema/lymphedema. When asked whether they produced or sold medical devices for the treatment of chronic edema/lymphedema nearly half (48.74%) responded that this question was not applicable. Approximately one fifth (20.59%) responded yes.

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FIGURE 1:

The two most commonly cited factors related to ineffective treatment were Limb Volume Increase (64.30%) and Uncontrolled Symptoms (58.18%). Factors for improvement are listed in Table 3.

Health Professional Other

38.2

PROFESSION

Occupational Therapist

8.99

Physiotherapist

were Limb Volume (59.34%), Quality of Life (56.03%) and Mobility (33.22%). Patient Satisfaction (29.09%) and Cellulitis (26.28%) were close behind. Input on outcome measures indicating success are shown in Figure 2.

26.4

Nurse

6.18

0

5

10

15

20

25

30

35

40

45

PERCENTAGE

TABLE 1

Type of facility (N = 153) Facility

Number Percentage

Community 35 17.86 Hospital Lymphedema Specialist Centre Wound Specialist Centre

Discussion It is important to recall that in Canada health care is a provincial responsibility. Thus, there are 14 different health systems when the territories and the federal government are included. Treatment standards are relatively consistent, but funding varies from province to province. In some provinces much is covered and in others little is. What is consistently not covered is manual lymphatic drainage.

54 27.55 TABLE 2

23 2

11.73

Outcome measures most commonly used in everyday practice

1.02

Measure Percentage

Academic Institution 9 4.59

Circumference measurements 70.23

Other

Mobility 66.51

30 15.31

All remaining questions were answered by both patients and health professionals.

57.21% responded that outcomes were measured some or all of the time. Only 25.45% stated that they were not measured.

The majority of respondents (62.58%) did not know if guidelines existed, while one third (33.48%) were aware of international, national or regional guidelines that existed.

For 69.12% some aspects of treatment were funded and only 17.08% reported that no aspects were funded. In general participants reported that they paid for approximately half of their treatments for chronic edema/ lymphedema. The only treatment consistently paid by 85.55% of respondents was massage therapy (manual lymphatic drainage).

Respondents agreed that the top three outcomes, which should be measured, Wi n t e r 2 0 1 9 / 2 0

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Successful Treatment Outcomes 70

60

50

40

30

20

10

0

St

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m

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Lim

lu Vo

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ua

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20.22

Medical Director

FIGURE 2:

PERCENTAGE

Outcome measures commonly used by industry and health professionals are shown in decreasing order in Table 2. Anything used less than 20% of the time is not shown.

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TABLE 3

Factors for improvement Factor Percentage Replied Increased professional knowledge 78.93 Access to specialized chronic edema/lymphedema services 75.75 Reimbursement of treatment

71.57

Increased patient knowledge

63.88

Access to compression therapy 60.37 Clinical and costeffectiveness research

57.53

National guidelines and standards

57.19

Quality of life

60.00

Validated Outcome measures 46.49

Patient adherence

57.21

Do not know

2.84

Photography 43.72 Episodes of cellulitis

43.26

Weight/BMI 34.88 Circumference only without volume

33.95

Wound size

30.70

Complications of treatment

26.51

Wound type

24.19

Hospital admissions linked to chronic edema

22.79

Conclusions The response to the questionnaire was high and results focused consistently on key areas including limb volumes, quality of life, mobility and episodes of cellulitis as outcomes.

Improvements in outcomes require increases in both patient and health professional knowledge and improved reimbursement. LP Acknowledgement: The remarkable response results from the dedication and cooperation of the Provincial Lymphedema Associations.

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Helpful Suggestions

Hints and Tips Emergency funds If you are travelling abroad make sure you have extra funds available to pay emergency medical bills (for things such as cellulitis care etc.) You should be able to claim it back through your travel insurance, provided you keep the receipts - but be prepared to pay out first.

Source: The Lymphie Life.com

It’s not your fault With all the lists of dos and don’ts – many people worry that there might have been something they could have done to prevent their lymphedema.

There has been limited research as to what triggers may be responsible. Recent research is indicating that people may be

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predisposed to a malfunctioning lymphatic system. Therefore, just remember – IT’S NOT YOUR FAULT. What is important is that you start to manage the chronic condition early so that you have the best chance of living a healthy, normal life with lymphedema. Source: Pathways Fall 2014 Word of mouth The best way to spread awareness about lymphedema is through word of mouth. By talking to your friends, family, and colleagues about lymphedema it will bring more attention to the lack of recognition and awareness for the condition in Canada.

Source: Lymphedema Treatment Act

Thank your therapist Lymphedema therapists work hard for little reward—consider sending a note to tell your therapist how you’re doing and to say thanks for teaching lymphedema self-care. You can also send letters commending your therapist, doctor, nurse, and fitter to their respective professional organization, letting them know how they have made your medical care easier.

LP

Bonnie Pike – Phoenix, Arizona (originally published Pathways Fall 2013)

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Research Advances

Did You Know?

S.T.R.I.D.E. Professional Guide to Compression Garment Selection for the Lower Extremity

This supplement is a rare example of a paper that combines clinical experience and theoretical knowledge on textiles used in compression therapy. The authors’ intention is to propose a decision support system for choosing specific compression devices, which can be adjusted to counteract the individual signs and symptoms in an optimally adopted way. The document concentrates on compression devices which can be self-applied by the patients—compression stockings and adjustable wraps. The acronym ‘S.T.R.I.D.E.’, incorporating both textile characteristics and clinical presentation, stands for: Shape, Texture, Refill, Issues, Dosage and Etiology. The intent of the mnemotechnical value is to highlight that successful compression includes more than dosage alone. In addition to dosage, etiology and patient presentation need to be incorporated, including a patient’s physical ability to use compression effectively as part of the daily routine, thereby promoting adherence.

The suggested algorithms provide a valuable guide to stride across the important, but still underestimated field of medical compression therapy and will help to put the prescription of a specific product on a more rational basis.

Source: Journal of Wound Care Vol. 28, No. Sup6a Free Access

Lymphedema-associated comorbidities and treatment gap A study of 26,902 lymphedema patients from Blue Health Intelligence (BHI) was conducted to demonstrate that a knowledge of comorbidities and treatment of lymphedema may assist in diagnostic decisions and healthcare planning. The study sample included patients with lymphedema who had been enrolled with continuous medical benefits for 12 months before and after the index date for the complete Wi n t e r 2 0 1 9 / 2 0

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years 2012 through 2016. Patients who were identified by comorbidity were then grouped into those receiving no treatment for lymphedema, and those receiving “any treatment” for lymphedema. “Any treatment” was defined as receiving manual lymphatic drainage, physical therapy, compression garments, or a pneumatic compression device. The purpose of this study was to determine the proportion of lymphedema patients comorbid with various known lymphedema-associated conditions and the treatment rates of lymphedema patients with each different comorbidity.

Among the 26,902 patients from the sample, breast cancer was the most frequent comorbidity with lymphedema (32.1%) and these patients received “any treatment” almost universally (94.2%). Other comorbid cancer types, such as melanoma (2.1%) and prostate

cancer (0.7%) were less frequent and received “any treatment” less often: 75% and 82% of the time respectively. Venous leg ulcer was the most common noncancer-linked comorbidity for lymphedema (9.6%), but only 81.7% of venous leg ulcer patients received any treatment for lymphedema.

These findings suggest that a sizable proportion of cancer-related lymphedema patients do not receive appropriate treatment. Furthermore, this study highlights the role of advanced venous disease as a lymphedema comorbidity that is frequently untreated and its associated gap in treatment.

Source: Copyright © 2019 Society for Vascular Surgery.

Published by Elsevier Inc. All rights reserved. Lymphat Res Biol. 2019 Jun 18. doi: 10.1089/lrb.2018.0089.

The CLF has a new Executive Director The Canadian Lymphedema Framework (CLF) Board of Directors is pleased to introduce you to their new Executive Director.

Katerina Ilievska is an accomplished business, marketing and communications leader with over 15 years of experience, primarily in the medical device, diagnostics and pharmaceutical industries. Katerina was employed by 3M at the time the Canadian Lymphedema Framework started and worked with Anna Kennedy on the 3M sponsored Lymphedema Landscape Study.

Katerina possesses strong leadership, financial management, relationship management, digital marketing, and public and media relations. Along with her experience in communications and project leadership, Katerina has board and event/fundraising experience with the Canadian Women’s Foundation. She looks forward to supporting everyone to advance lymphedema care in Canada.

Katerina graduated from Wilfrid Laurier University with a Bachelor of Business Administration and earned her MBA from Queen’s University Smith School of Business.

She also has a certificate in digital and graphic design from Humber College.

Katerina resides in the Greater Toronto Area and will be based out of both the CLF office and her home office.

Anna Kennedy has retired as Executive Director but will maintain her role as Editor of Pathways magazine.

Please join us in welcoming Katerina to the CLF family.

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Education Education

Canadian and International Events March 6, 2020 Worldwide

World Lymphedema Day. Contact your provincial lymphedema association to learn about local events and activities that you can join in for raising awareness for lymphedema and advancing care for the one million Canadians living with this disease. n www.website

May 28-30, 2020 Hobart, Tasmania

13th Australasian Lymphology Association Symposium.

Modern Lymphatics: 2020 vision. n www.lymphoedema.org.au

July 8 – 20, 2020 Snow Mountain Ranch WinterPark, Colorado

Camp Watchme is the first and only summer camp for children fighting lymphedema in the United States.

Registrations are already full but interested parties can email camp@brylansfeat.org to be put on the waitlist.

October 1-3rd Copenhagen, Denmark

10th International Lymphedema Framework Conference.

Co-hosted by the Danish Lymphoedema Framework and the Danish Wound Healing Society. Clarion Hotel Copenhagen Airport. n www.lympho.org/2020-conference/ Ketogenic Solution for Lymphatic/Fat Disorders Conference. The most current research and information in keto way of eating for lipedema, lymphedema and lymphatic fat disorders. Email ketolymphconf2020@lipedema-simplified.org

Oct 23-25, 2020 Raleigh/Durham NC

Training and Certification Programs Courses are offered by various educational schools for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses. We encourage you to refer to the websites of our advertisers and the individual provincial associations for specific dates and locations.

2020 Dates Canada and the United States

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 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.

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association

Silver Sponsorship

Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador Lymphedema Association of Nova Scotia

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.

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

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