Pathways Spring 2020 (Volume 9, Issue 2)

Canada’s Lymphedema Magazine

Pathways

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SPRING 2020

Empowering patients and professionals

Positive Health Primary lymphedema genetics Practical kitchen tips Inequity in lymphedema care NOUVEAU...

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une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways 2020-03-02 4:18 PM

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Editor’s Message

Perspectives in lymphedema treatment When great minds meet, we benefit from progress

I

n my 10 years as a board member for the International Lymphoedema Framework (ILF), I have been fortunate to organize and attend many international lymphedema conferences.

One of the most memorable presentations I’ve had the pleasure of viewing was from Dr. Machteld Huber, from the Netherlands, who I first heard present at the ILF conference in Rotterdam (2018). We were able to bring her message to Canada, featuring her as our keynote speaker at the National Lymphedema Conference last fall. Her concept of Positive Health; assessing all the domains of life and understanding how they impact our overall health, made a lasting impression on me.

It was a pleasure to have Dr. Huber interviewed at the conference by Dr. Anna Towers and Pamela Hodgson, so we could include the adapted transcript for our feature article.

She was kind enough to offer the “spider web” she refers to in her interview for our readers to use as a wonderful personal assessment tool. It can be found on our website under Pathways references.

Hospital based clinicians working across Canada held their own round table discussion at the 2019 CLF conference, where they had the opportunity to share the challenges and gaps in treatment protocol. Thanks to Mary-Ann Dalzell and Marie-Eve Letellier for not only leading the session but also documenting the group discussions for our readers. Their report highlights the differences in reimbursement and coverage across the country. It is unfortunate that where you live in Canada continues to dictate the type of

treatment and compression that you have access to. We thank the provincial association volunteers for continually advocating with their provincial health ministries for improvements in lymphedema reimbursement.

We hope that one day their continued efforts will lead to reimbursement equality.

Interest in the lymphatic system within the research community has gained traction in the last decade, particularly in the area of genetics and primary lymphedema. Dr. Kristiana Gordon shares how the discovery of the various gene mutations has guided the clinical protocol at St. George’s s Primary Lymphedema Clinic (UK). Categorizing primary lymphedema into five different categories led the clinical researchers to develop their colour coded diagnostic pathway. This tool can guide physicians in their genetic testing for primary lymphedema and also screen and treat patients for associated health problems. Receiving a formal diagnosis will be a huge benefit to patients and their families.

Due to a lack of supporting evidence for nutrition specific to lymphedema, books dedicated to this topic are difficult to find.

We thank dietitian Popis Kasvis and physical therapist Marize Ibrahim for providing a thorough review of the comprehensive new resource book by Jean LaMantia and Ann DiMenna entitled “The Complete Lymphedema Management and Nutrition Guide”. The article

offers some insight into how to interpret the book’s recommendations. Their opinion is that the book can be a valuable resource for lymphedema patients as it aims to engage and empower patients in self-management.

Naomi Dolgoy, an occupational therapist from Alberta shares innovative and creative practical tips on how to adapt how you perform your daily tasks in the kitchen. I have personally already taken some of her advice to heart and started sitting at the counter with a stool to save my lymphedema leg when chopping vegetables etc. My lymphedema leg thanks Naomi.

Dr. Anna Towers, from McGill University Health Centre provides us with this issue’s researcher profile. The article helps us understand her philosophies in terms of evidence-based medicine that has shaped and guided her research and clinical work.

I believe both patients and therapists should take her advice to heart; to question everything and ask for the evidence. Lastly, I echo her sentiments that lymphedema therapists be encouraged to present and write up interesting cases. The Pathways magazine is the perfect platform to share those unique cases to help spread knowledge with others across Canada.

We hope you enjoy reading this issue and encourage you to share your thoughts with us. LP

Visit the CLF Health Professionals Website Portal 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 support your practice www.canadalymph.ca

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Contents

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A positive life is central to positive health

An interview with Dr. Machteld Huber.

Spring 2020 n Volume 9 Issue 2

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates.

Editorial Board 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

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An update on the genetics of primary lymphedema

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Creating a pathway for testing and diagnosis.

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The kitchen synch Practical suggestions for daily kitchen tasks.

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Canadian hospitalbased lymphedema programs

Editorial Assistant 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 - $30.

United States - $60.

International - $75.

Single copies and back issues - $8.

Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Photos in this issue are courtesy of K. Gordon, A.Towers, www.varidesk.com, www.uline.ca, www.abilitysuperstore.com, Canstock and Shutterstock

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

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Report of a round table discussion.

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Researcher Profile

Anna Towers

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“Question everything—and collaborate with others.”

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CLF launches national physician education and awareness campaign 5 things every physician should know.

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Book review

The Complete Lymphedema Management and Nutrition Guide.

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ADDITIONAL INFORMATION: Hints and tips

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Did you know?

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Canadian and International events

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TO ACCESS PATHWAYS ONLINE

Canada’s Lymphedema Magazine

Pathways

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SPRING 2020

Positive Health Primary lymphedema genetics

Login information: www.canadalymph.ca/pathways-online User name: Pathways Subscriber Password: Positive

Practical kitchen tips Inequity in lymphedema care NOUVEAU...

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Empowering patients and professionals

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

Spring 2020

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Research Perspectives

A meaningful life is central to Positive Health An interview with Dr. Machteld Huber

Dr. Anna Towers and Pamela Hodgson sat down with Dr. Machteld Huber at the Fall 2019 National Lymphedema Conference, in Toronto, Ontario for an exclusive interview. The article below is edited and adapted (with permission) from its original transcription for ease of reading, continuity and brevity.

Can you tell us about your background, your philosophy of care, and how you came to think about health in this way?

Dr Huber: I am a general practitioner, and from a post-war generation, so the war was relevant. In my interactions with people who had terrible experiences, I wondered: how can you go through that and still remain healthy?

At a young age, I was already interested in what I would now call resilience.

Between the ages of 30 and 35 I had four different serious illnesses, the final one being cancer. Being a patient myself taught me that medical knowledge is wonderful but is only one component in healing and health. There are different parts of the personality, different parts in life, which have a very strong supportive influence. If you really address those both during your illness and afterwards, it enhances your recovery and your wellbeing.

With the first illness I was surprised that I was not taught that in medical school, and so with my subsequent illnesses I used myself as a research subject to study being a patient.

Once I was mostly recovered, I decided I wanted to work on that because if we address the situation more broadly, illness integrated

into a human being as a whole, you can really enhance well-being and real health.

We understand you have a bachelor’s degree in philosophy, and an interest in nutrition as well?

Dr Huber: Correct, I have broad interests.

When I decided to go on this path of broadening the definition of health care, I decided it needed to be science based, or it would not be accepted by the medical profession. Besides my research, I worked with very damaged people (e.g. drug addicts and people with war traumas). I wanted to observe if the laws of health and resilience that I thought I had found in myself would work for them as well. I was very impressed with how much you can accomplish with these very damaged people.

Please explain what your earlier research work entailed.

Dr Huber: I was working at a multidisciplinary research institution where they did a lot of research on sustainable agriculture; different production systems and resulting effects on plants and animals. Genetically identical organisms, depending on how you raise them,

Anna Towers MD, is a palliative care physician and Director of the Lymphedema Program at the McGill University Health Centre in Montreal, Quebec. She was a founding member and co-chair of the Canadian Lymphedema Framework from 2009–2016 and still sits on the Pathways Editorial Board.

Pamela Hodgson RMT, MSc, is a retired lymphedema therapist who worked in private practice in St. John’s, NL then at the McGill University Health Centre Lymphedema Centre with Dr. Anna Towers, where she participated in both research and clinical care. She has been involved with the CLF since its inception.

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produce completely different adult plants and animals. These serve as nutrition for human beings. The defense system of the plants is in the micronutrients. When you fertilize plants intensively, you get enormous growth, but the plant’s micronutrients are diminished since they are protected with pesticides rather than their natural defense system.

Given that micronutrients are important for food quality, could it be that if you fertilize less, and subsequently have fewer crops that these plants would be more nutritious?

I worked on this for several years, conducting several research projects. In one very big study for the Dutch government, we studied multi-generations of animals, feeding them with either one production system or the other. Everything else was identical and all the food was nutritious according to the standards. Although all the animals were found to be healthy, (even though one group was slightly heavier), we couldn’t decide which group was actually healthier.

But when we induced illness in the animals (a standardized challenge resulting in a kind of flu), and subsequently studied their recovery, the difference became apparent in their metabolism and immune system. One set of Ly m p h e d e m a p a t h w a y s . c a 5

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Health as the ability to adapt and self-manage in the face of social, physical and emotional challenges.

animals (group A) recovered much faster than the other.

Then the question came, is this group of animals healthier or not? When I asked a group of professors/scientists which animal they preferred to be, nearly everyone said they wanted to be animal A—which had recovered faster. And when it turned out that animal A had eaten organically produced food, they were confused. Can we now say that this animal is healthier? Not according to the definition of the World Health Organization (WHO). So this is how I came about working on this concept of health.

In what ways then, does your concept of Positive Health differ from the World Health Organization (WHO) definition?

Dr Huber: We didn’t use the term Positive Health right away. First we had this new concept of health. From my animal study we had found resilience, but I could not call resilience health because the WHO definition said that health is a state of complete physical, mental and social well-being. They had formulated it very idealistically, but that doesn’t connect to normal life. And resilience, being weak and getting stronger, doesn’t fit because the definition is so static. In 2009 the Government of Holland asked me to organize an international conference to discuss: what is health? We discussed all kinds of perspectives and came to this description: health as the ability to adapt, (which is resilience) and self-manage in the face of social, physical and emotional challenges. We found it very important that you have this feeling that you adapt in your own way.

So, we have the physical, and the emotional-mental, and social (the same domains as the WHO), only not static.

But as we are always challenged in new situations, our definition of self-management 6 Ly m p h e d e m a p a t h w a y s . c a

means finding your own answer to that.

We stated the concept not ‘health is’ but ‘health as’ the ability. And we didn’t call it a definition—as a famous sociologist advised us that by calling it a definition, you make a demarcation between what health is and what it isn’t’. Instead, we went for a general concept, which is a characterization; more vague, but a kind of working direction.

So how do you go from there (your concept of health) to a more dynamic self-agency and to the concept of Positive Health?

Dr Huber: Well, after the initial conference, the government requested a research project in the Netherlands to investigate support for this description and ways to operationalize it.

The Six Dimensions of Positive Health Bodily Functions

Daily Functioning

Mental Functions & Perception

Social & Societal Participation

Spiritual/ Existential Dimension

Quality of Life

Example of a completed self-assessment

I contacted many different groups: patients, medical doctors, specialists and general practitioners, physiotherapists and nurses, insurance companies and policy makers. I conducted focus groups and interviews with 140 people. I asked: Do you support this concept? What do you think is positive and what is negative? What to you are indicators of health and do your indicators connect to our concept? I came home with 556 very broad concepts/indicators of health and we categorized them in different ways.

And that’s your spider web?

Dr Huber: Yes, we categorized everything into these six dimensions or categories, covering 32 words altogether. In my original publications we called it six pillars but now

we call it domains (bodily functions, mental functions and perception, spiritual /existential dimension, quality of life, social and societal participation, and daily functioning).

Then with these 32 words we created a questionnaire where 1,938 participants responded. The first question was “Do you support the concept? What’s positive and negative?” And that was completely supported.

Secondly, “How strongly do you think these 32 words are connected to health?” And what we found with all the responses was that everybody connected the physical to health, but in the other five domains there was a big opposition of minds. For the patients, all categories were connected to health, whereas for the health professionals, policy makers and others it was primarily bodily functions. I had big support for the first concept: ability to adapt and self-manage.

In the elaboration or operationalization I had strong opposition because the doctors and policy makers said one thing, and the patients said another. In Holland everybody says we place the patient centrally and that was our argument: to say that you need to take seriously how patients view health. It’s about life as a whole. That is what they literally said. So it was really a choice to take it quite broadly. But I needed another name. I chose Positive Health because it connects to the positive psychology of Seligman1, although it is broader than that.

The most important reason that I chose Positive Health is that when I studied the minutes from when the WHO was founded in 1948, I found a discussion about ‘positive health’ that they considered using. They already had physical, mental and social and they wanted to call it positive health but in the end they didn’t. But I thought, this is good company.

I call this broad approach Positive Health with capital P and capital H, to indicate our interpretation including the six domains.

In my interviews, people told me: don’t make health a new goal, but think of health as a means to a meaningful life. Several people (sociologists, psychiatrists, pediatricians) said that we should get away from just focusing on the medical side.

What is the new aim then?

Dr Huber: What is your purpose in life? That should be central now. We are so far advanced Spring 2020

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now in medical knowledge, having a meaningful life should now be the aim. If you have a disease, can you still live a meaningful life?

I adopted that into our approach. To help people work with it we invite them to evaluate their life domains. And then we teach the health professional that they should also aim for the person to achieve or maintain a meaningful life. The professional should ask: Would you like to change something, and what would that be? And with that we ask: what is important in your life? Not what do I as a professional think is important but what does the person want? That is the biggest change in the approach of the professional and the difficulty in training them to have this ‘different conversation’. They are so prone to advise immediately and say what the other has to do. But we need to learn to listen and to ask what is important to you: the patient. Only then will people start to speak about what is really important for them. And if it is possible to help the patient to really engage with what is most important to him or her, then you find that people start to become active, become happier, and experience better welfare—and their physical condition often follows.

How do these ideas and concepts relate to lymphedema as a chronic condition; how should we deal with treatment and what guidelines should we use?

Dr Huber: People ask, should we not treat disease anymore? I say of course you need to treat disease! I have great respect for what medicine can do! It is very good to treat the body but it is very important to also pay attention to the human as a whole. That is what we try to add. My presentation at the National Lymphedema Conference had a take home message: “Referring to the spider web of Positive Health, how do you evaluate the different domains in your life and what would you want to change? Then start doing it!”

So the question would be to the patient or client: how would you assess your state of health looking at the various domains Dr Huber: Yes. And then the next question is: What is really important to you? What is your dream? Can you put your dream and your purpose in life central and really focus 8 Ly m p h e d e m a p a t h w a y s . c a

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on that? Of course your condition is still there. But what we find is, that if people really place this purpose central, the condition is easier to bear.

How would you tie this in with public health care spending?

Dr Huber: In the Netherlands, presently insurance companies just pay related to the physical aspects. But now we have doctors that start to co-operate closely with the social domain and maybe with the spiritual domain.

When doctors co-operate with the social domain they save money, because many physical problems really stem from social problems.

this concept connects to their original idealism and enthusiasm that led them to choose this profession, even though medical practice leads you far from this. But more and more colleagues are starting to adopt this. In such change processes you have the early adapters and we are now reaching bigger groups.

How about the government?

Dr Huber: They see that this is the future but they have difficulties because the whole system is focused on disease with 97% of the budget going to disease spending. Like a mammoth tanker ship, it takes a long time to change direction.

So if one’s concept of health is broader and integrating financing broadly, then ultimately you have a more rational way of spending health care dollars.

Dr Huber: Yes. What we notice is that a colleague of mine, who works most intensely with this concept, saves the insurance company lots of money. As a general practitioner he refers 25% fewer patients to the hospital, but the local hospital then runs into financial problems. So the question is: how should the hospital be financed? If the hospital just gets money because of illness (referrals) then things like that oppose a change.

And what about international interest?

Dr Huber: There is a lot of interest internationally as well. There is a book out already in Japanese about it. I trained physicians in Japan. A colleague is now training in Iceland because Iceland wants to adopt it.

Belgium has already adopted it and Germany shows great interest. People really think it is good for the future. So you will understand that I am a grateful person at 68!

Your ideas are very revolutionary, because they affect the funding mechanisms and involve social dynamics and education of health care professionals.

Dr Huber: I agree. We have the tool (spider web) for adults; we designed (involving the target group) a spider web for children, for adolescents and for people with language problems (so it can be read to them). My ideal is that it will be integrated into the education system, so school children will become familiar with taking responsibility or seeing possibilities to improve their own wellbeing in all these areas. That is what real prevention is, to learn from an early start to be healthier.

Dr. Machteld Huber’s own experience with illness led to her discovery that she could actively and positively influence her recovery.

She developed a new, dynamic concept of health, which she elaborated into the broad concept of “Positive Health” with six different dimensions. Huber was named the most influential person in Dutch public healthcare in 2016. To support practical implementation of this patientcentered approach she founded the Institute for Positive Health (www.iph.nl). LP

What has been the response from health care professionals in your country?

Dr Huber: It is quite well received in Holland.

The federation of medical specialists has a vision for 2025 and this thinking is central.

More and more physicians are discovering that

Thank you for taking the time to meet with us and share your concepts with our Pathways readers!

Reference 1. Seligman, Martin EP. Positive Health, Applied Psychology: an International Review, 2008,57, 3–18, doi: 10.1111/j.14640597.2008.00351.x Spring 2020

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Clinical Practice

An update on the genetics of primary lymphedema

By Kristiana Gordon

IMAGE 1

Introduction: The term “primary lymphedema” is used to describe swelling of any body site that has occurred as a result of a developmental fault in the structure or function of the lymphatic pathways and is presumed to be genetic in origin. There are many different subtypes of primary lymphedema, and it should not be considered as one single condition.

T

he lymphatic system has been largely ignored by medical and scientific communities until recently, leading to a lack of progress in the management of lymphedema compared to other diseases. This perceived lack of interest was probably due to difficulties in visualizing the lymphatic system (since the vessels are transparent), understanding its function, and a lack of effective drug treatments. However, physicians and researchers are now more engaged as a result of recent advances in lymphatic research.

The development of diagnostic genetic tests and pharmaceutical drug trials has provided additional encouragement that more can be offered. It is highly likely that continued research will lead to better investigations and treatments for all patients with lymphedema in the near future.

The lymphatic system The lymphatic system is now recognized as an important part of the circulatory and immune systems. It has several functions including: 1) maintenance of fluid balance by returning lymph from the interstitial spaces to the blood circulation, and 2) maintaining immune function (i.e. detecting an infection in the body and then generating an immune response to fight it). When the lymphatic system fails it causes the accumulation of protein-rich lymphatic fluid within interstitial spaces. This swelling is known as lymphedema, usually affecting one or more limbs, with associated brawny changes of the skin. Lymphedema also

causes an increased risk of local infection (e.g. cellulitis/erysipelas) due to impaired immune surveillance within the swollen area.

Secondary lymphedema Lymphedema may develop in people with a previously healthy/normal lymphatic system that becomes damaged (for example, by trauma or cancer treatment) and this is called ‘secondary lymphedema’. This is the most recognized type of lymphedema.

Primary lymphedema ‘Primary lymphedema’ occurs when a person is born with a genetically determined fault of their lymphatic system (Image 1). It is unclear how common primary lymphedema is due to a lack of prevalence studies. However, it is likely to affect at least one person in every 6,000, based upon a study done in the 1980s (Dale, 1985). This is supported by the number of patients cared for in the Primary Lymphoedema Clinic at St. George’s Hospital in London (more than 1000 families seen in the clinic to date, with > 100 new referrals every year).

Primary lymphedema occurs as a result of a genetic predisposition causing the lymphatic system to fail to develop normally, or to be maintained adequately. This causes abnormal drainage of lymphatic fluid, which results in swelling of the affected region (Connell, Brice et al 2010). Primary lymphoedema may occur as an inherited condition from a parent, but

Dr. Kristiana Gordon is an Associate Professor and Consultant Physician in Dermatology & Lymphovascular Medicine. She is Clinical Lead of the Lymphoedema Service at St. George’s Hospital, London where her team cares for thousands of patients with primary and secondary lymphedema, and has a doctorate in the genetics of primary lymphedema and imaging of the lymphatic system.

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A little boy born with lymphedema of the left leg. often there is no family history. A patient with primary lymphedema usually only has problems with swelling of one or two limbs, but some rarer forms of primary lymphedema may occur in association with health problems e.g. congenital heart problems in lymphedemadistichiasis syndrome, systemic (internal) lymphatic abnormalities (e.g. fluid around the heart or lungs) in the rare Hennekam syndrome, or leukemia in the very rare Emberger syndrome (Connell, Gordon et al 2013).

Primary lymphedema is not one single disease, but the presenting feature of several distinct clinical disorders/diseases. Each type of primary lymphedema is likely to have a different “mechanism of disease”, i.e. a specific part of the lymphatic system fails to function normally. For example, some types of primary lymphedema occur because of faulty valves within the lymphatic vessels, and another type because of fluid absorption issues. It is important to understand the mechanism of lymphatic transport failure in our patients, where possible, as we hope one day to be able to offer more effective targeted treatments. In other words, we may be able to offer tailor-made treatment plans depending on the subtype of primary Spring 2020

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lymphedema and the underlying gene mutation.

Even though someone with primary lymphedema will have an underlying gene mistake/ mutation since birth, the swelling often develops later in life. Historically, primary lymphedema was categorized into three groups purely depending on the patient’s age at onset of swelling: ‘lymphedema congenital’ (presenting at birth), ‘lymphedema praecox’ (pubertal onset) or ‘lymphedema tarda’ (swelling onset after 35 years of age). Some physicians still use this rudimentary classification system, but it fails to take into account any health problems that might be associated with the lymphedema, thereby failing to provide prognostic information.

A Primary Lymphedema Classification Pathway In the last two decades, mutations in several genes have been discovered to cause primary lymphedema. Some, but not all, of these genes have been shown to play a role in lymphangiogenesis (the body’s process of developing and maintaining a healthy lymphatic system).

Fifteen causal genes have now been discovered,

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but these mutations are only detected in one quarter of our patients. In other words, we have only discovered the underlying genetic cause of a patient’s primary lymphedema in 25% of cases. The other 75% will have an as-yet-undiscovered gene mutation as the cause. New gene mutations are continually being identified by lymphatic researchers, so we expect the diagnostic detection rate to continue to increase.

The discovery of these gene mistakes has changed our diagnostic approach in the clinic, which is now based on clinical phenotyping (i.e. the process of associating a patient’s lymphedema with any other health problems) and genotyping (DNA blood tests looking for the underlying causal gene mistake). The clinical experience and research from the St. George’s Primary Lymphoedema Clinic led us to realize that primary lymphedema can be broadly divided into five different categories. Causal gene mistakes/mutations have been identified for a number of disease subtypes within these five categories. We subsequently developed a colour-coded diagnostic pathway that describes specific primary lymphedema conditions and

The development of diagnostic genetic tests and pharmaceutical drug trials has provided additional encouragement that more can be offered. guides the patient’s physician on genetic tests that may be available for their patient, annotated in red within the pathway boxes (Image 2).

Five subtypes of primary lymphedema 1 Genetic syndromes associated with lymphedema (blue section of the pathway): In this group of patients the swelling is not the predominant feature of the child’s health problems, but simply part of their overall condition.

Examples include Turner syndrome where some girls are born with swollen feet and/or hands.

Some children with Noonan syndrome also develop lymphedema of their legs in childhood.

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IMAGE 2

St George’s Primary Lymphoedema Classification Pathway

2 Lymphedema with systemic (internal) lymphatic abnormalities (pink section): This rare form of primary lymphedema does not affect many children. These children may be swollen at birth (usually affecting many limbs/body parts) and have internal lymphatic problems. These internal problems may include fluid around the heart and/or lungs.

They may also have abnormal lymphatic drainage of the small intestine, which means they cannot absorb fats properly, causing them to have diarrhea when they eat fatty foods.

One example of this rare problem is Hennekam syndrome due to a mistake in one of several genes (e.g. CCBE1, FAT4 or ADAMTS3).

the skin and a longer (or sometimes shorter) limb. We are realizing that some of these conditions develop because of a PIK3CA gene mistake within the swollen limb tissue (this is called a ‘mosaic’ problem), and the gene mistake will not be found in their blood DNA. Small skin biopsies are taken from the red birthmark areas to identify the causal gene mistake. Drug treatments that target the PIK3CA/mTOR pathway can sometimes be offered to patients with a confirmed genetic mutation who are suffering with progressive overgrowth problems. This type of treatment is only offered by physicians with a special interest in these conditions, and not by family physicians or lymphedema therapists.

3 Lymphedema in association with overgrowth of tissues (yellow section): Lymphedema may develop in patients that have overgrowth of tissues within the swollen limb e.g. the muscle, bone and/or fatty tissues are increased in size. There are several conditions within this group, including Klippel-Trenaunay syndrome where a child may have lymphedema, varicose veins, red/purple birthmarks of

4 Congenital lymphedema (green section): Congenital lymphedema describes lymphedema/swelling that is present at birth or develops within the first year of life. There are several different causes but the most recognized is Milroy disease. This condition causes swelling of the feet and ankles at birth, sometimes varicose veins develop after puberty,

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and one third of boys may develop a buildup of lymphatic fluid within the scrotum (hydroceles).

Milroy disease is due to a mutation in the VEGFR3 gene. Children of affected individuals have a 50% risk of inheriting the problem.

In this condition, the initial small lymphatic vessels fail to absorb (“suck up”) the lymphatic fluid properly from the tissues in the lower legs.

However, the prognosis for people with Milroy disease is often very good as the swelling does not progress above the knees, and there are no serious associated health problems.

5 Late-onset primary lymphedema (purple section): The term “late-onset lymphedema” is used to describe a primary lymphedema that develops after the first year of life (i.e. non-congenital lymphedema). Lymphedema distichiasis syndrome is one example. It presents with bilateral lower limb lymphedema that typically develops after puberty. Distichiasis (extra eyelashes) is present from early childhood and may cause eye irritation. Other problems may include varicose veins, cleft palate and heart issues Spring 2020

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(rare problems with the valves of the heart).

Lymphedema distichiasis syndrome occurs as a result of mutations in the FOXC2 gene, and children of affected individuals have a 50% risk of inheriting the problem. The FOXC2 mutation causes abnormal valve development within the lymphatic vessels, i.e. the mechanism for the development of lymphedema is that the abnormal valves can’t keep lymphatic fluid draining in one direction towards the heart.

Another example of late-onset primary lymphedema is Meige disease (the commonest form of primary lymphedema and a subtype that is not associated with any other health problems).

Treatment Unfortunately there is no gene therapy for primary lymphedema yet, nor proven curative treatments for lymphedema in general. Several surgical techniques have been implemented in recent years in a bid to improve lymphatic drainage in patients with secondary lymphedema. However, these are unlikely to significantly benefit patients with primary lymphedema, as they do not have an “obstruction” within their lymphatic system,

rather a molecular/genetic abnormality that cannot simply be bypassed with an operation.

Management should be aimed at improving and controlling swelling through physical treatments designed to stimulate lymphatic flow through existing or collateral drainage routes.

This management approach is essentially the same as for patients with secondary lymphedema. Treatment is overseen by lymphedema therapists and will usually involve the use of compression (garments and/or bandaging regimes), with or without manual lymphatic drainage massage. Regular exercise, skin care (including management of cellulitis), healthy eating, and self-care (especially when children mature and become independent) are vital components of lymphedema management too.

Conclusion Healthcare professionals’ knowledge of primary lymphedema has significantly increased in recent years. The St. George’s diagnostic pathway helps physicians to offer appropriate genetic testing (assuming the underlying gene mistake is known for the subtype), and to screen and

treat for associated health problems for patients with primary lymphedema. Patients and families benefit from receiving a formal diagnosis of their condition as it allows the physician to confidently predict the clinical prognosis. The pathway also helps the physician to offer genetic tests, and to interpret the results. This is relevant in this new age of whole genome sequencing where several mutations may be identified and the physician must decide if the results are meaningful for their patient (correlation with the classification pathway can be enormously helpful in this situation).

In addition, use of this pathway has facilitated the discovery of new causative genes, as we analyze and compare the DNA of patients with similar patterns of lymphedema and other health problems. We are confident this ongoing research will result in the development of improved treatment options. The St. George’s diagnostic pathway is in the process of being revised once more and an updated version will be available in 2020 for physicians to utilize in their clinics. LP A full set of references can be found at www.lymphedemapathways.ca

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2020-03-02 4:19 PM

Therapist Perspective

The kitchen synch

By Naomi Dolgoy

Meal preparation and eating are activities that people do every day, yet for persons living with lymphedema, changes to the manner in which kitchen tasks are carried out may be required.

F

or some people, meal preparation is simply a necessary task, while for others, time spent in the kitchen is a leisure or enjoyable pursuit. Kitchen tasks can be approached from the perspective of managing the task or from the perspective of using the task as a therapeutic endeavor, or both. Spending time in the kitchen can be considered both an exercise in endurance and a chance to complete rehabilitative activities. Focusing on how one spends time in the kitchen and being open to making some changes if required may allow a person with lymphedema to manage kitchen tasks more effectively and efficiently. While this article is unlikely to improve your culinary skills, it does provide insight into how you can safely engage in meal preparation tasks to make the most of your time in the kitchen.

Kitchen design/set-up The physical layout and organization of items in a kitchen can make all the difference to the successful completion of kitchen tasks. You can arrange your kitchen space for ease of use, or you can arrange your kitchen space to assist you in completion of daily therapeutic exercises, or both.

1 Ease of use set-up: Make regularly used items easy to access by placing them at waist or chest height in order to avoid having to bend or reach constantly. If you have the opportu-

nity to change the layout of the kitchen, avoid ground-level ovens so as to reduce the burden of bending and the risk of burns; instead, opt for wall-unit ovens that open between waist and chest height. As well, consider a sink with an overhang, such as a large country-style sink that allows for a stool to be positioned for sitting or perching by the sink to make washing tasks less burdensome. Refrigerators should be positioned with nearby counter space on which to place items. Consider refrigerators with a side-by-side freezer as an option to avoid bending for bottom freezers. Cupboards with pull-out racks enable easy access of items in the back of a cupboard; grouping items in bins within a cupboard or on a counter can also provide ease of access.

2 Therapeutic set-up: Purposefully place some regularly used (durable, not fragile) items at either low or high heights, thus requiring you to squat, reach, or stool-climb to access them.

For those with arm lymphedema: particularly when doing movements that require crossing the mid-line of the body, such as putting away dishes from a dishwasher, ensure that dishes are placed in cupboards and drawers on either side of the dishwasher. That way, you can complete half the task on each side of the dishwasher, alternating between your dominant and non-dominant arm to ensure that you are moving your whole body therapeutically when unloading the dishwasher.

Naomi Dolgoy is a practicing occupational therapist, certified lymphatic therapist, and doctoral candidate in the faculty of Rehabilitation Medicine at the University of Alberta.

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Body mechanics/endurance Regardless of what culinary delight is being prepared, the way in which you position yourself, move around the kitchen, and how you use your lymphatic limb can be thought of in terms of ease of managing the task and/or as a therapeutic endeavour.

1 Ease of managing the task: Pick times or peaks of high energy to complete food shopping and kitchen tasks; if more time is required than you have energy for, consider breaking a task into smaller component parts and/or timeframes. Organize grocery items in groups while at the store, so as to make the task of unpacking items easier and more efficient at home. To reduce having to move more than necessary, organize kitchen tasks to ensure that the items you need are ready prior to starting the task. For example, if morning is your time of high energy, consider grocery shopping and cutting up the foods for that evening’s meal prior to lunch; then, when you are ready to cook dinner, the task will take less time. To ease upper limb lymphedema, consider placing a towel roll on the counter or table surface, and resting the elbow or upper arm to reduce the burden of supporting the arm against gravity. To ease lower limb lymphedema, consider using a sit-stand-perch stool to reduce the burden of standing. If a stool won’t fit in the kitchen space, consider leaning against the counter, or even sitting on a chair at the table, to complete parts of a kitchen task. When seated, consider resting the affected lower limb on a chair or stool so that it can be elevated to reduce the burden of swelling.

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2 Therapeutic endeavour: To maximize your time in the kitchen (to save time for increased activity endurance therapeutic exercises), it is important to select a time of day when you have higher energy. You need to have energy to focus on and attend to managing the kitchen task, as well as the many risk factors in the kitchen (hard surfaces, heat, sharp and breakable objects, etc.), all the while adding in some bonus therapy time. To maximize the therapeutic opportunities in kitchen tasks, consider selecting each item individually, as this increases both the number of sit-stand transfers and your overall movement in the kitchen.

Similarly, use unpacking of groceries as a chance to stretch, squat, bend, and move around in the kitchen.

Consider using a timer or stopwatch to complete parts of tasks in sitting or perching positions, and then transfer to a standing position (for example, alternate 3 minutes of sitting followed by 5 minutes of standing), incrementally, over time, building your tolerance and endurance for standing for longer periods of time.

For lower extremity lymphedema, take advantage of any opportunity to complete calf-pumping exercises (these can be done either seated or standing, using single-leg or double-leg), but make sure that the kitchen task can safely be managed while you focus on these movements.

Rolling out dough may work with calf-pumping exercises, but, stove, oven, or chopping tasks are not recommended during exercise. One strategy may be to wear a shoe only on the non-lymphatic side, so that the lymphatic limb is forced to complete the calf-pumping exercises; use the timer to build endurance incrementally, and, again, avoid this activity when working with heat or with sharp objects.

If the lymphatic limb is elevated while sitting, use this opportunity to complete point-and-flex ankle/foot exercises. Consider using all sitting, perching, or standing opportunities to complete range of motion or ankle rotation stretches.

For upper extremity lymphedema, use of the meal preparation movements can be beneficial, such as stirring, mixing, rolling, and/ or kneading. Consider using the lymphatic Spring 2020

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limb to complete some of these tasks. When setting up the kitchen tasks, consider placing some of the items in an offset position (either to the right or left of your midline) in order to encourage some gentle twisting, trunk mobility, and lymphatic flow in the core of the body.

Any actions that require fist pumping or limb elevation also increase the therapeutic element of a kitchen task; consider working dough or breaking up leafy greens with yours arms in front of you and slightly elevated to chest level. If the lymphedema presents in your non-dominant arm, use this opportunity to strengthen that arm. Slow, easy rolling and gentle stirring are great ways to bring range of motion exercises into the kitchen; consider switching directions and arms when stirring or mixing so as to enhance the therapeutic benefits to the task. Making bread requires many upper extremity movements, including kneading, pounding, rolling, and shaping.

Safety/Equipment Safety is always the number one priority in a kitchen task, and particularly so for a person managing lymphedema, wherein the goal is to maximize activities while minimizing risks of wounds, infections, or flareups. With that in mind, there are many strategies to ensure a safer, more enjoyable, and rehabilitative kitchen experience. First, always protect your body. Proper footwear, which includes shoes with closed toes and gripping soles, should be worn for any cooking or chopping task. Kitchen gloves, such as dishwashing gloves and oven mitts/gloves, can be essential in protecting the hands. Workgloves that are heat and cut resistant (made of Kevlar) can be easily repurposed for the kitchen.

Those who wear hand compression garments may consider wearing larger-sized, long-wristed kitchen mitts/gloves over the lymphedema garments. Fire-protectant or Personal Protective Equipment (PPE) aprons (available in hardware stores,) tend to be more durable and have more accessible pockets than do kitchen aprons.

Specialty equipment in the kitchen may facilitate hand and upper extremity use, and may enable lengthier culinary sessions. For

Spending time in the kitchen can be considered both an exercise in endurance and a chance to complete rehabilitative activities. upper extremity lymphedema, Rubazote (medical grade foam tubing) can be used to build up the handles on utensils and devices. Dycem (non-slip plastic material) can be used under dishware and/or cutting boards to ensure that objects do not slide, as well as to aid in opening lids. For cutting tasks, consider using a knife with extra grip or a rocker knife, and/ or a modified cutting board. Rocker knives ease cutting tasks and reduce stress on the hand.

Modified cutting boards can include various supports for cutting, such as the opportunity to secure the items being cut. For lower extremity lymphedema, a significant issue is body positioning. Consider the sit-stand-perch stool as useful equipment for managing all ranges of kitchen tasks. In addition, consider a pushcart, carrying tray, and/or bin to enable easier movement of objects around the kitchen.

Finally, when transferring groceries to the kitchen, carry/lift only grocery bags with a weight that is appropriate to your ability, or opt for wheeled grocery carriers, pushcarts, hiking backpacks, or two-handled crates.

Summary Time spent in the kitchen is unique to every individual; there is no universal, perfect recipe for the management of kitchen tasks.

As long as you keep your safety and health needs in mind, the kitchen can be an effective place for including some therapeutic exercises while tackling cooking tasks. LP Editor’s Note: Some strategies and suggestions in this article have been adapted for a lymphedema population from occupational therapy approaches targeting older persons and/or people with mobility issues.

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Research Perspective

Report of the round table discussion

Canadian hospital-based lymphedema programs

By Marie-Eve Letellier and Mary-Ann Dalzell

T

he second edition of the “round table discussion for hospital based-programs” was held during the National Lymphedema Conference in Toronto, November 1st and 2nd 2019. Like its previous edition, the lunchtime session was a great success with, unfortunately, too little time and consequently limited discussions.

Mary-Ann Dalzell, Chair of the Oncology Division of the Canadian Physiotherapy Association, led the discussions and Marie-Eve Letellier, clinician-researcher in post-breast cancer arm morbidity and lymphedema, assisted significantly by recording the notes upon which this article is based. Thanks to the assistance of the Canadian Lymphedema Framework (CLF) the majority of provinces were represented. Hospital-based clinicians ranged from physiotherapists (50%) to a large variety of allied health care professionals (50%) including nurses, occupational therapists, kinesiologists, and physicians. A participant survey was sent before the conference to facilitate the conversations and the following is a summary of our survey results and discussions.

Characteristics of hospital based lymphedema programs across Canada The characteristics of the programs sampled had many common elements. A lack of human

Annual adult allottment of compression garments

Newfoundland & Labrador British Columbia

3 daytime garments 1 nighttime + 1 adjustable garment 75% reimbursed PE I No garments

Alberta 3 ready-made garments or 2 custom garments 75% reimbursed

Nova Scotia No garments

Saskatchewan 4 daytime garments (incl. adjustable garment) 1 nighttime garment (24mths) 100% reimbursement

New Brunswick No garments Manitoba

Ontario

No garments

6 garments including nighttime 75% reimbursed

resources with rarely a full-time equivalent dedicated to lymphedema services was prevalent -- and as a result most programs were overburdened with patients in need of services.

Most patients seeking consultation and treatment had secondary lymphedema related to cancer with Alberta being one of the rare provinces with a program for primary and other non-cancer related lymphedema. Patients with breast cancer and upper limb lymphedema were being screened and treated in all hospitals

Mary-Ann Dalzell, BScPT, MSc is co-founder of the McGill Cancer Nutrition- Rehabilitation Program, and served as Associate Director from 2002 to 2006. As a clinician with 30 years’ experience in the management of complex orthopedic problems, she has coordinated and taught specialized courses in Orthopedics, Sports Medicine, Biophysical Modalities and presently teaches Cancer Rehabilitation Courses across Canada.

Marie-Eve Letellier, PhD, is a kinesiologist, a lymphedema therapist and theory instructor (Vodder) and an Aqua lymphatic Therapy (ALT) instructor (Tidhar). She is a clinician-researcher with a great interest in arm dysfunction during and after breast cancer treatment. She works in a hospital setting and also has a private practice.

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No garments

Quebec

2 daytime garments BCRL surgery related only 100% reimbursed

NOTE: All provinces have some provisions of garments for low income individuals plus program conditions including eligibility and reimbursement caps.

Check with provincial health care services for details.

represented (100%) and, in addition, some offer preventive educational sessions one month post-surgery. In great contrast, lower limb lymphedema screening and management programs are rare.

The principal sources of referral to lymphedema services are oncology-related specialists, family physicians and nurses. Given the referral overload, questions arose on how each hospital and/or provincial region deals with the triage and decision-making process as well as the management of waiting lists and follow-up schedules.

Most hospitals are using a “P1-P2-P3” prioritization system, classifying patients as being urgent, semi-urgent versus educational and community management. Patients are screened by clerks, therapists or physicians and the first triage identifies the type of lymphedema (primary, cancer-related, or other secondary), the urgency for intervention, and eligibility for treatment. Palliative care is considered high priority. Ineligible patients due to restricted admission criteria are systematically referred to other community services and eligible patients generally given some generic advice Spring 2020

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and put on a waiting list for treatment.

The waiting period varies from a few weeks to several months. Priority is given to patients in acute need of treatment or those who have developed frank complications secondary to their lymphedema. As a result, most hospitals almost exclusively manage urgent cases. When the waiting period is extended, some clinics call patients every three months to ascertain if there are changes in lymphedema status and/or verify if they consulted private community-based therapists. One center uniquely offers an education class to those on the waiting list and this session is scheduled once per month. At that time, a questionnaire is filled by participants following the session in order to help prioritize the waiting list. Once again, when possible either financially or geographically, patients are referred to therapists and fitters in the community due to staff limitations. The reality remains that hospital services for lymphedema provided to our Canadian population fall far short of being adequate.

Data collection is ad hoc and used by 68% of the respondents for both clinical and research purposes. The timing of specific protocols for follow-up varies from monthly evaluations, to periodic calls, to ONLY if

treatment inclusion and garment coverage, varying from none to unlimited coverage.

See the chart regarding basic information for each province as of January 2020.

Please inquire with provincial health care services for greater detail and information.

MLD within hospital clinics is provided in most provinces, however interventions are limited in time and access is NOT in accordance with the severity or necessity of treatment but rather in accordance with each patient’s diagnosis (breast vs other), age (children) or income capacity (low). About half of the programs are included in the hospital budget and the other half funded through private foundations and fund-raising activities. Again, provincial standards for funding fall far short of the need and rely on community resources and private insurance coverage to bridge the gap.

Service gaps and challenges We left this session with more questions than when we arrived, with all participants agreeing that there are significant inequities across Canada and within each province in terms of service provision and coverage. The standardization of criteria for service provision needs to be established to ensure that the existing bias

Percentage of hospital based programs servicing secondary lymphedema related to cancer etiologies 100

100

90 80 70 60

50

50

50

50

42 35

40

35

30 20 10 0 Breast

Prostate

Gynecological

needed. Management tends to be done primarily in private community settings and as a result there are great disparities in access to lymphedema services between the insured or financially capable and those who are uninsured. A good example of these disparities is reflected in provincial garment coverage.

Provincial funding Significant variance and inequality exists across Canada relating to provincial Spring 2020

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Melanoma

Head & Neck

Sarcoma

Other

towards exclusive management of breast cancer patients is re-examined and that inclusion criteria reflect the needs of lymphedema patients as a whole as opposed to their individual financial means. It was unanimously agreed that staffing ratios related to the volume of referrals must be given greater priority.

Advocacy with provincial decision-making entities and the education of physicians on prevention, recognition, and management of primary and secondary lymphedema as an

The reality remains that hospital services for lymphedema provided to our Canadian population fall far short of being adequate. essential service is key to the development of services across the country. All hospital participants in this roundtable discussion endorsed the need for multidisciplinary teams with physicians and allied health care professionals working together in a chronic disease model of care, which adapts well to lymphedema. Moreover, there is a definite need for improved focus on the whole person and best supportive care rather than condition-specific management.

Conclusion There are always a million things that can be done, but with time being limited the questions arising were related to strategies for improvement. The current bias in our most common models of care slant significantly towards the insured and financially stable Canadians. The recognition that lymphedema significantly impacts quality of life and cannot be completely self-managed is critical. It was concluded that the next step for hospital-based programs is to have clear Canadian guidelines developed and reinforced by the clinical experiences of all participants.

For provinces that are in the process of obtaining better coverage, continued advocacy for adequate hospital based services is essential. Most importantly, a thrust to have publicly subsidized programs available to ALL types of lymphedema must be made. This includes primary and secondary, acute and chronic, lower limb, trunk as well as head and neck lymphedema. These patients need resources to be made equal to those who have had breast cancer. LP We wish to thank all the hospital-based clinicians for their enthusiastic participation and sharing of war stories. In addition, we could not have gathered the troops without the assistance of Anna Kennedy and Shannon Moore, who was acting as support to the CLF. L y m p h e d e m a p a t h w a y s . c a 17

2020-03-02 4:19 PM

Researcher Profile

The research career of Anna Towers

“Question everything—and collaborate with others.”

Dr Anna Towers, MD, FCCP is Associate Professor of Family Medicine and Oncology at McGill University and Director of the Lymphedema Program at the McGill University Health Centre, Montreal. She divides her time between lymphedema and palliative care clinical work, education and research. She is co-founder, with Dr. David Keast, of the Canadian Lymphedema Framework.

Q A

Who and what have been the influences in your research career?

Thank you for this opportunity to reflect! I am a clinician primarily, but I was trained to question everything.

One of my vivid memories as a McGill medical student in the 1970s was doing medical ward rounds with a visiting McMaster University clinician-epidemiologist.

She would ask us, as we emerged from a patient’s room, regarding a particular (often potent) drug treatment that we were proposing, “What is the evidence for using that drug in this patient’s case?”

Or, as another of my teachers would say, in more vivid language: “You might as well just tar and feather them!” At the time, evidence-based medicine was a new thing.

But I became steeped in that tradition.

At the Montreal General Hospital, where I subsequently worked, we had regular teaching on how to critically review medical articles. I was surrounded by clinicians who were not only very curious, but they followed through on even simple research questions using literature reviews, simple qualitative or quantitative designs, or by partnering with career researchers to get their answers.

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Q A

Tell us about your present research activities.

I am lucky to be working with lymphedema therapists who are also curious, so we get ourselves into a lot of trouble by thinking up all kinds of research projects! We find that, whenever we ask a question in lymphedema care, chances are very good that there is no scientific data to answer it. If we don’t have the research skills ourselves, we partner with those who do. University-based career researchers with funded projects are looking for clinicians who have access to research subjects, because they themselves often do not. As a trade-off, we ask the researchers to help us answer our own clinical questions. I am lucky to have access to McGill University resources. I have also had the good fortune and opportunity to form rewarding research relationships with professors from Concordia University (at present) and other universities from across Canada and the USA in the past. Our clinical team brings the research questions and preliminary drafts of protocols. Then we rely on our research colleagues to flesh out the proposals and we co-apply for funding. Although I have been involved in CIHR-funded projects, most of the research in my career has involved small projects funded by Foundations and such.

Some recent topics that we have researched in collaboration with our Concordia University colleagues are: 1. The use of high definition ultrasound to assess lymphedema tissues (Dr Hassan Rivaz, Dr Robert Kilgour), and 2. The effect of lower limb lymphedema on balance (Dr Nancy St-Onge). We are just completing a pilot randomized controlled trial to investigate whether a compression and exercise intervention might reduce the incidence of leg lymphedema after gynecological cancer treatment (Shirin Shallwani, PhD candidate at the University of Ottawa is the principal investigator). I have had an interest in investigating the link between socioeconomic status and access to lymphedema treatments.

We are also investigating the results of lympha-

ticovenous anastomoses and lymph node transplants on lymphedema control through a case series study (Marize Ibrahim and Dr MarieÈve Letellier are the main agents for that).

Q A

What advice might you have for lymphedema clinicians who want to do research?

Doing research can be fun, but 99% of it is drudgery and hard-headed commitment.

It may take years to get funding and to recruit subjects for a trial, to get even a basic question answered. Then we have to analyze the data, write up the results, get conditional approvals from editors, and rewrite manuscripts, to finally get published. I remember one of my research teachers telling us, when choosing which research question to pursue, that we should try to ensure that the research topic resonates with at least three goals or values in our life: clinical, educational, personal, family-relationships, spiritual, sociopolitical, special interest or hobby, etc. I think that advice has served me well. Clinical research is time-consuming and most of it is done on a volunteer basis.

I believe that basic training in evidencebased practice and assessing the medical literature is important for lymphedema therapists. Therapists also need to be encouraged to present and write up interesting cases. If you think of it, clinicians see interesting cases every day: it could be a new variant of a common problem, an unusual reaction to accepted treatment, a patient with an innovative approach, or a rare presentation. These are worth presenting and writing up. I smile, though, when I think of another mentor of mine, a hospital surgeon, who used to passionately repeat the oft-quoted line amongst physicians: “God save us from the clinical case example!” That is, we cannot generalize from individual cases. So, we need more randomized controlled trials and casecontrol studies. I think that we also need many more lymphedema therapists who have Masters degrees and PhDs, who can collaborate—or lead—in doing such trials.

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“I was surrounded by clinicians who were not only very curious, but they followed through on even simple research questions using literature reviews, simple qualitative or quantitative designs.”

Team staff and volunteers at the Lymphedema Clinic, McGill University Health Centre, Montreal, Quebec.

Q A

What do you think are important priorities for future research?

We need to focus on the basics. We need good, reproducible lymphedema assessment methods (volumes etc.). Lymphedema therapists should keep good electronic databases of clinical information and assessments. There is a lot of information that we could mine from databases. Secondly, we need to make use of the science that is already out there but that is not being applied. Knowledge translation is time-consuming but essential.

An important part of a researcher’s job is to disseminate existing research information, and that takes time and patience. I think that future practice guidelines will better reflect research findings as applied to a chronic illness such as lymphedema. The self-management model and emphasis on exercise and weight control will become accepted as the foundation of cost-effective treatment for not only lymphedema, but for most chronic illness. Unless we become more evidence-based, we will have a hard time being respected by the medical profession.

Q A

You seem to be a strong promoter of higher education.

Yes, because if we encourage not just more courses, but more formal educational degrees, then research will happen naturally.

To have more actors with higher education is important in our increasingly complex world.

Maybe that will lead to better informed, enlightened political leadership! Politics, public health, economics, values and ethics come into it, but there are researchers in those disciplines too, with whom one can team up! LP

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2020-03-02 4:19 PM

Awareness Initiatives

CLF launches national physician education and awareness campaign

By Katerina Ilievska

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DIAN CANA EDEMA LYMPH WORK FRAME

in the printed Canadian Medical Association Journal, March issue, as well as in their digital eTOC and Sante digital publications.

In addition to this national campaign, the provincial associations will be distributing the

Katerina Ilievska, BA, MBA is the newly appointed Canadian Lymphedema Framework Executive Director. She has over 15 years of experience in marketing and communications, primarily in the medical device, diagnostics and pharmaceutical industries.

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B1585

ince its inception, one of the primary goals of the Canadian Lymphedema Framework has been to educate healthcare professionals on risk reduction, early diagnosis and treatment of lymphedema in Canada. In alignment with this goal, the CLF is launching a national awareness and education campaign specifically targeting physicians.

Physicians are at the forefront of early lymphedema diagnosis and treatment, however many are unaware of the condition outside of cancer-related prevalence. With the support of our Education Working Group, our Board Co-Chair Dr. David Keast and past Co-Chair Dr. Anna Towers, the CLF has designed a physician reference card to help with early and broad diagnosis of lymphedema and chronic edema from all causes.

To coincide with World Lymphedema Day, this card will be distributed as an insert

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

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• Hered SECOND nt. ita • Congen ry • Obesity ARY ital • Many • Venous disea cancers se • Surgica and l interven their treatm ents (ly • Immo tions mph no bility • de disse Infection • Trauma COMPL ction, rad ICATIO iation) NS AN • Recurre D CON SEQUE • Skin an nt bacterial cellu N CES O F INAD • Chronicd tissue change litis in the affec EQUATE ted s • Reduce wounds, lymph e.g. papillomata limb, risk of TR EATMEN se • Negativ d function, wo orrhea, lymph , thickened sk pticemia T rk dis cysts in (pach e psycho ydermi logical/b ability a), derm ody im atitis ASSESS age/so cial impa MENT ct AN D INVE • Edem a STIGAT • Stemm (pitting or non-p IONS itting) • Rule ouer sign • Identi t deep venous fy caus thr om bo es of co -existing sis, cancer, ca rdiac, ren pain TREATM al, liver ENT disease and hy Skin car poprot e einemia Compres -

cards as opportunities arise to engage with their local physicians.

Through this joint national and regional approach, this initiative is expected to reach approximately 78,000 physicians across Canada and is the broadest reach for physician education and awareness that the CLF has undertaken in partnership with the provincial affiliates. LP The CLF would like to express sincere gratitude to the Lymphedema Association of Quebec for their generous financial contribution without which this initiative would not have been possible.

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Book Review

The Complete Lymphedema Management and Nutrition Guide

By Popi Kasvis and Marize Ibrahim

W

hat should I eat or avoid to help manage my lymphedema? Are there exercises I can do to reduce the swelling? What can I do to care for the skin on my affected limb?

These are all questions Jean LaMantia and Ann Dimenna’s book, “The Complete Lymphedema Management and Nutrition Guide,” may help answer. Written as a comprehensive resource book, it aims to engage and empower patients in self-management of lymphedema through physical therapy and diet. The following review reflects the opinions of the book reviewers.

The book is divided into four sections: 1) Understanding lymphedema, 2) Self-care for lymphedema, 3) Nutrition for lymphedema, and finally, 4) Recipes for lymphedema.

In part I, there are good efforts to explain lymphatic physiology and pathophysiology to lay readers. However, there are certain inaccuracies regarding lymphatic fluid circulation, lymphatic fluid composition, the difference between lymphedema and edema, and the pathology of primary lymphedema. Reference to a “sluggish lymphatic system” and vascular conditions related to lymphedema are unclear (pg. 22); the impact of chronic overload on the lymphatic system from obesity is not outlined (pg. 23); nor is the impact of radiotherapy treatment (pg. 23).

Terminology in the stages of lymphedema is

inaccurate (ex. “small pores”, pg. 24), as well as ways of measuring lymphedema (pg. 25).

Regarding genetic disorders, there are many more than 7 that impact the lymphatic system (pg. 27). The use of diuretics is not recommended for lymphedema; these agents may only have possible use in the palliative care setting for symptom management (pg. 28).

The authors provide generally good information on lymphedema risk reduction. Certain elements of advice could be contested. For example, the use of compression garment with long drives is sometimes recommended depending on travel destination (pg. 33); blood pressure reading can be done on the arm with less lymph node dissection if bilateral axilla are affected; standard cuffs don’t fit the feet (pg. 34). Regarding repetitive movement (pg. 34): precautions are provided, however some patients work in factories and have no choice but to continue with repetitive movement-- therefore the use of a compression

Popi Kasvis, PhD(c), MSc, RD, is a registered dietitian working in the Cancer Rehabilitation Program of the McGill University Health Centre. Her research interests include providing interventions to improve nutrition and functional outcomes of cancer patients at every stage of the disease.

Marize Ibrahim, MSc, PT, CDT (CS), ALT, is a registered physical therapist, lymphedema therapist, and a Clinical Specialist—with an Oncology designation through the Canadian Physiotherapy association. She is currently working at the McGill University Hospital Center Lymphedema Clinic.

Spring 2020

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sleeve should be recommended. Importantly, regarding opting for a sentinel node biopsy versus an axillary node dissection: we believe that this should not be a decision left to the patient, as the authors imply (pg. 37). It is not our place to recommend avoiding biopsies; physicians do what is required, according to established and research-based protocols, to save the patient’s life and eliminate cancer.

By the same token, we are concerned regarding the suggestion to limit the radiation dose.

There are oncology protocols for a reason; it is not our place to speak on this (pg. 38).

In Chapter 3 there is a nice summary of skin care and management. There are, however, some inaccuracies regarding skin anatomy (pg. 40) and the terminology regarding skin changes with lymphedema is not clear (pg. 45).

Chapter 4 is devoted to manual lymph drainage (MLD). This is one component of lymphedema management, however it is not the most important. The lymphatic system contracts the same (if not more) during exercise, compared to MLD alone. The authors acknowledge that promotion of more exercise as opposed to MLD alone has added benefits (pg. 49). Reduction of lymphatic swelling from MLD is short-lived; MLD alone is not enough for long-lasting results (pg. 50). Review of the research is important regarding MLD. Chapter 5 on Multilayer Compression Bandaging is well done overall. There are very useful pictures that demonstrate upper and lower extremity bandaging techniques for patients.

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The authors remind the reader to contact their lymphedema therapist for more detail.

In Chapter 6 there is a good summary of the different types of compression garments and their use. The mmHg of compression tables have changed and would need to be updated (pg. 77). There is a nice explanation of the difference between flat and custom-fit garments.

In Chapter 8 there is a nice summary of the benefits of exercise on the lymphatic system.

A word of caution regarding yoga: many breast cancer patients take hormone therapy, which increases the risk of osteoporosis. Many yoga positions have precautions and contraindications for patients with low BMD (bone mass density; according to Osteoporosis Canada-Bone Fit Program). We would recommend speaking with a therapist who is trained with Osteoporosis Canada to understand more about BMD scoring and precautions/contraindications.

In part 3 entitled, “Nutrition for Lymphedema,” registered dietitian Jean LaMantia posits 5 nutritional interventions that she uses in her practice. These include: 1) weight loss, 2) low-fat/low-long-chain fatty acid diets with the addition of medium-chain triglycerides, 3) reducing chronic inflammation, 4) low sodium diet, and 5) the use of supplements. The author is transparent that only weight loss is an evidence-based recommendation, while the others are based on poorer quality research, anecdotal evidence and hypotheses which she puts forth.

Weight loss is the most studied nutrition intervention to manage lymphedema, yielding moderate evidence for efficacy in the short term.1 In very few pages, LaMantia clearly explains how excess adiposity can exacerbate lymphedema and provides realistic and concrete guidance on weight loss techniques. The “10 Tips to Help You Lose Weight,” are comprehensive and provide advice on mindful eating, recognizing satiety cues, portion control, tracking intake, increasing physical activity, setting realistic expectations when making changes and building healthy relationships with food. Less evidence-based is the section on intermittent fasting, or more specifically, time-restricted feeding, as proposed by LaMantia. Time-restricted feeding may be suitable for certain individuals, however as LaMantia points out, no studies on the efficacy of this diet in lymphedema patients have been conducted. In fact, a recent review

by Rynders et. al. demonstrated no difference in 22 L y m p h e d e m a p a t h w a y s . c a

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weight loss achieved either using time-restricted feeding or continuous energy restriction.2 Chapter 11 tackles the use of a low-fat diet, specifically a low-long-chain fatty acid (LCFA) diet, for lymphedema management. LCFA do not enter the bloodstream directly from the intestine.

Instead, they enter the lymphatic system in the form of chylomicrons, via the intestinal epithelia, and are shunted to the subclavian vein via the thoracic duct. Therefore, a fatty meal rich in LCFA will increase the volume of lymphatic fluid, thus possibly worsening lymphedema. Unlike LCFA, medium-chain triglycerides (MCT) do not enter the lymphatic system, instead enter the bloodstream via the portal vein. As such, LaMantia proposes a low-fat diet (especially

Low Salt Diet

Achieve a Regular Bowel Routine

Sufficeint Protein and Fluid Intake to Meet Needs

Low Fat Diet with Possible Inclusion of MTC Oil

Nutrition for Lymphedema Healthy Body Weight

AntiInflammatory Diet

Time Restricted Feeding

one lower in LCFA), with or without the use of MCT oil, as a strategy to decrease lymphedema volume. This despite also stating that there is limited evidence supporting such a diet. The best study cited by LaMantia is by Oliveira et. al.3 who conducted a randomized controlled trial of 10 breast cancer patients with upper-arm lymphedema. The intervention included the use of complex decongestive physical therapy with a MCT or corn oil (LCFA) diet. Mean reduction in volume between the healthy and lymphedema arm in the MCT group was significantly greater than in the LCFA group. Additionally, there was a significant decrease in the mean difference in circumference measurements of the affected and healthy limbs 10 cm below the elbow in the MCT group, with no difference in five other regions measured. While these findings are promising, the authors did not report any dietary data or weight changes in the participants, despite having collected this data. Was it MCT or something else that caused these results?

It is difficult to justify such an intervention in clinical practice based on this one trial. Low-fat/ low-LCFA diet and the use of MCT oil is difficult to implement, and may cause deficiency of long-chain essential fatty acids, which LaMantia discusses. Not as clearly detailed is that MCT oil may also have adverse cardiovascular effects by decreasing HDL cholesterol and increasing triglycerides when used daily for > 6 months.4 Additionally, gastrointestinal side effects, such as abdominal pain/cramps, bloating, diarrhea and nausea may occur.4 More research is required to confirm the efficacy of a low-LCFA, MCT-rich diet in lymphedema management.

The third strategy proposed in Chapter 12 is the reduction of chronic inflammation.

This, according to LaMantia, can be achieved by following a modified Mediterranean diet.

LaMantia suggests moderate intake of the LCFA-rich olive oil, nuts, seeds and avocados that are staples of the Mediterranean diet, but may exacerbate lymphedema. LaMantia goes on to recommend possibly replacing these fats with MCT, which she says may improve lymphedema but may also cause inflammation! Furthering the confusion, LaMantia suggests the use of an application called the, “IF Tracker,” which assigns a numerical value to indicate whether a given food is pro or anti-inflammatory. This suggestion, despite LaMantia acknowledging the lack of studies supporting the use of this application to reduction inflammation. Not only is this section confusing, it is not at all based on any research in lymphedema patients.

The fourth intervention proposed to help with lymphedema is following a low sodium diet. Again, LaMantia points out that there is a paucity of information currently available related to low-sodium diets and improved lymphedema.

One mouse study by Mizuno et al.5 is cited, proposing that large amounts of salt may reduce the pumping efficacy of afferent, but not efferent, vessels in iliac lymph nodes. The other cited study was a very poor quality human study of 21 participants by Robert et al.6 Of the participants in the study, only 3 had lymphedema, with the rest suffering from congestive heart failure. Participants were put on a very low-calorie (1000 kcal/day), salt restricted (1000 mg/d) diet, which led to reductions in their lymphedema. However, the participants also lost a significant amount of weight, which clearly confounds the results, as the author Spring 2020

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rightly points out. Based on these two studies, no conclusions can be made that reducing sodium intake is an evidenced-based treatment for lymphedema. Despite this, attempting to limit sodium intake as part of an overall healthy diet is justified, and LaMantia provides good tips to achieve this. The most important point in this chapter is the recommendation that protein and fluid restrictions are not helpful in reducing lymphedema.

Finally, the use of dietary supplements is covered in chapter 14. This chapter clearly states that there is limited evidence to justify the use of any supplements for lymphedema management. LaMantia correctly states that patients should speak to health care professionals prior to taking any supplements.

She also correctly points out that the Internet is full of testimonials and miracle products offering great results, but are actually just snake oil. This chapter does a good job in tempering expectations of the efficacy of supplements that suffering patients often look to for relief.

The rest of the book offers a lymphedema “food pyramid,” which, due to the lack of evi-

The most important point in this chapter is the recommendation that protein and fluid restrictions are not helpful in reducing lymphedema. dence for many of the dietary recommendations put forth, is not worth following. The recipes provided are nice, offering high-fibre, low sodium, fruit and vegetable-rich meals; it may be worth leaving out the MCT oil from the recipes.

The nutrition component of this book should be read with the following in mind: Other than weight loss, there is a paucity of evidence supporting any specific diet for lymphedema.

In patients without any comorbidities requiring dietary modifications, eating patterns for healthy populations should be recommended to lymphedema patients. Canada’s new dietary guidelines featuring the balanced plate would be

a good place to start. Given her clear passion, and her frustration with the current lack of evidence, I encourage Ms. LaMantia to conduct her own good quality research utilizing some of the recommendations made in this book as the dietary treatment. In this way, she will further our profession, help to ensure dietitians working with lymphedema patients conduct their practice guided by scientific evidence and, most importantly, offer the best care possible to patients who are living with lymphedema.

The authors made enormous and commendable efforts to create a comprehensive book for patients, including pathology, CDT treatment, self-care efforts, exercise and nutrition. To reiterate what the authors’ state throughout, this book should not replace the advice of a lymphedema therapist nor a registered dietitian. Prior to applying the advice provided in this book, lymphedema patients are highly encouraged to consult with their appropriate health care providers. LP A full set of references can be found at www.lymphedemapathways.ca

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Helpful Suggestions

Hints and Tips Veterinary covers The plastic gloves that large animal (horses, cows) veterinarians use fit quite nicely over an arm with either compression bandaging or garments. It will enable you to wash dishes, brush dogs, clean etc. without worrying about getting the compression wraps or garments dirty or wet.

The gloves are disposable but fairly heavy plastic so could be used again and again. These “palpation” sleeves can be purchased from Amazon. Just Google “veterinary long gloves”.

Source: ACOLS.com

Source: Adapted from Stepup-speakout.org

Informative video

Photo: pagesix.com

Lose that weight Excessive weight and obesity may also contribute to the onset of primary and secondary lymphedema involving the lower extremities. Excessive weight, especially morbid obesity can have a negative impact on the return of lymphatic fluid from the legs; additional fluid volumes associated with obesity may overwhelm an already impaired lymphatic system.

Direct pressure on lymphatic vessels by excess fatty tissue, impaired diaphragmatic breathing and decreased muscular function can also be factors contributing to the manifestation of lymphedema.

The U.S. Centers for Disease Control (CDC), in collaboration with the Lymphatic Education and Research Network (LE&RN), released an informative video presented by American actress Kathy Bates. You can access the 5-minute educational video at: https://www.cdc.gov/ cancer/survivors/patients/ lymphedema.htm.

LP

Source: Lymphatic Education and Research Network

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Research Advances

Did You Know?

Quality of Life—surgical or nonsurgical interventions

The purpose of this study was to evaluate quality of life (HRQoL) after two different treatments to the 12-month follow-up point.

Study participants were patients with moderate lymphedema in the upper or lower limb who attended a Swedish rehabilitation program (RP) undergoing conservative treatment, or those with severe, chronic lymphedema dominated by excess adipose tissue, who underwent liposuction (LS) combined with controlled compression therapy (CCT) in Australia, Scotland, or Sweden. The patients completed the Lymphedema Quality of Life Inventory (LyQLI) before intervention and after 1, 3, 6, and 12 months. Mean values and standard deviations were calculated for total limb volume and excess limb volume. Mean values were also calculated for the three LyQLI domains (physical, psychosocial, and practical).

The results show improvements in HRQoL in physical (p = 0.003) and psychosocial domains (p = 0.002) at 1 month after the RP, with results remaining steady for 12 months for the physical domain (p = 0.024). Fifty-seven eligible LS patients completed the LyQLI. The results show improvements in HRQoL in all three domains (p < 0.001), with results

remaining steady up to the 12-month followup (p < 0.001). The total volume in affected limb and the excess volume decreased significantly in both patient groups 1 month after intervention (p < 0.001). Conclusions: Treatment with a conservative RP in moderate lymphedema or with LS combined with CCT in severe lymphedema improves HRQoL.

spearheaded by the Lymphedema Advocacy Group. The all-volunteer group is grateful to the thousands of US advocates who have contacted their members of Congress and urge them to continue doing so until the bill is signed into law.

For additional information or to take action please visit LymphedemaTreatmentAct.org.

Source: Lymphat Res Biol. 2019 Dec 05; PMID: 31808720

Lymphedema Treatment Act passed in USA

On December 12, 2019 the Lymphedema Treatment Act (LTA) was passed in the US House of Representatives. This legislation will ensure Medicare coverage for compression treatment items, and set a precedent for other insurance plans to follow. Passage in the House is a huge milestone, but in order to become law the LTA must also pass the Senate. The bill’s sponsors, Congresswoman Jan Schakowsky (IL) and Senator Maria Cantwell (WA) are working to see the LTA signed into law in 2020.

With 83% of the members of Congress cosponsoring this bill, the LTA is the most supported healthcare bill currently before the US Congress. This tremendous support is a credit to the grassroots advocacy

Metabolic syndrome

Obesity, insulin resistance, dyslipidemia, and hypertension are fundamental clinical manifestations of the metabolic syndrome. Studies over the last few decades have implicated chronic inflammation and microvascular remodeling in the development of obesity and insulin resistance. Newer observations, however, suggest that dysregulation of the lymphatic system underlies the development of the metabolic syndrome.

This review summarizes recent advances in the field, discussing how lymphatic abnormality promotes obesity and insulin resistance, and, conversely, how the metabolic syndrome impairs lymphatic function. We also discuss lymphatic biology in metabolically dysregulated diseases, including type 2 diabetes, atherosclerosis, and myocardial infarction.

LP

Source: Front Physiol. 2019;10:1402 (Open access) PMID: 31798464

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.

2019 POWELL AWARD FOR ACCESSIBLE DESIGN: Hans Jorgen, Founder, Be My Eyes. A free app for iOS and Android devices that currently connects 160,000 blind and low-vision individuals to a network of almost 3 million sighted volunteers and representatives from participating companies.

Visit www.canadianabilities.org/canadacares for more information!

HEALTHCARE CENTRE

Spring 2020

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Education Education

Canadian and International Events March 12-14, 2020 Las Vegas, NV

Power Lymphatics is a conference specifically for lymphedema therapists to learn more about the management of chronic edema and tools to help achieve improved patient compliance and long-term outcomes through presentations from experts in the field and hands-on workshops. n www.powersymposium.com

May 28-30, 2020 Hobart, Tasmania

13th Australasian Lymphology Association Symposium.

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

June 11-13, 2020 Assisi, Italy

46th Congress of European Society of Lymphology.

The aim of the Congress is to contribute to the progress in Lymphology field through the scientific program. It will include lectures and free paper sessions as well as workshops and posters sessions. n www.gccongressi.it

July 8 – 20, 2020 Snow Mountain Ranch Winter Park, Colorado

October 1-3rd Copenhagen, Denmark

Oct 23 – 25, 2020 San Diego, California

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.

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.

A magical experience of lymphology is the theme of this year’s National Lymphedema Network Conference, which will be held October 23-25, 2020 at the Hilton San Diego Bayfront.

More details to follow. n www.lymphnet.org.

CLF Industry Partners

The Canadian Lymphedema Framework (CLF) wishes to thank our Industry Partners and Pathways Sponsors for their financial support in making this magazine a reality.

Diamond Partner

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.

You have access to information, resources, contacts and support Positive Health from people who know what you’re going through from their own personal experience.

You have the following organizations on your side.

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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.

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2020-02-07

10:32 AM

2020-03-02 4:19 PM