Pathways Winter 2018/2019 (Volume 8, Issue 1)

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

WINTER 2018/19

Empowering patients and professionals

Technology, films and lymphedema

Meaning of success Advocacy tips Machine learning

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

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Editor’s Message

The future is bright

Technology continues to enhance not only our day-to-day work but health advances as well.

A

n innovative study by a research team definition of success can differ greatly based at New York University highlights from patient to patient. The purpose of their how machine learning approaches can help study was to understand what people with clinicians with risk detection of lymphedema, lymphedema consider to be the meaning and are also showing promise for encourof success in both the intensive and aging patients to monitor their long-term phase of lymphedema lymphedema and be engaged management. We encourage in their treatment plan. readers to read the un“Remember Melanie Thomas, a abridged version of their to maintain a physiotherapist from comprehensive study in mindful balance Wales shares with its entirety on our website. as we juggle our readers how their

Compression is the work, family and lymphedema program is mainstay of lymphedema lymphedema”. using technology to educate management and advocacy patients and motivate behavefforts by the team at the ioral change. Innovative videos are Lymphedema Treatment Act “prescribed” by clinicians to patients to are convincing Senators across the provide standardized information to increase United States to support reimbursement their success of managing their lymphedema. for lymphedema. With over 13 years What is the measure of success in experience, Heather Ferguson shares lymphedema management? Authors Dorit her top ten tips to craft the story and get Tidhar and Jane Armer tell us that the attention from policy makers. Although the medical landscape in the USA is far different than Canada and other countries, patient advocates around the world can still use the same principles that she has had success with when dealing with their local politicians.

Angela Dunphy is one of those advocates, Anna Kennedy who is using her personal experiences to improve reimbursement in Newfoundland and Labrador. Her story of learning to carefully manage where and how she

spends her time, is an important lesson.

We thank her for not only sharing her story but for working hard to impact the lives of lymphedema patients in her province.

Advocates in Quebec eagerly announced how reimbursement for garments has recently improved for them. The hard work and dedication of the Lymphedema Association of Quebec has paid off; patients living with lymphedema in Quebec now have a “full wardrobe of compression solutions” to help them manage lymphedema.

On the other side of the country, there is exciting news out of Alberta. The newly announced Diane Irving Kipnes Endowment Chair in Lymphatic Disorders is the first of its kind in Canada and promises to position Alberta as a leading location for lymphatic research in the world. Lymphedema patients, clinicians, researchers and advocates will be very proud of this latest promise for increased research.

As the holiday season and winter months are ahead of us, we can all learn from Angela Dunphy’s message to maintain a mindful balance, as we juggle work, family and lymphedema. We could all use gentle reminders through these busy times. LP

Coming January 1: The launch of a new CLF Health Professionals - Website Portal Here’s a hint of what’s to come in the toolkit: • L ymphedema related case studies from fellow health professionals •P owerPoint presentation slides to support your educational efforts •S elect articles that are useful in your practice, such as research reviews •P atient photographs specific to lymphedema to enhance your presentations • A ssessment tools to help your practice Follow us on Facebook for announcements and details on how to sign up.

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Contents

Technology, films and lymphedema New ways of disseminating standardized information.

Winter 2018

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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 Pamela Hodgson PT David Keast MD FCFP Lori Radke PT, CLT Anna Towers MD FCFP Editor Anna Kennedy 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 Stock photos in this issue: CanStock, Fotolia Other photos are courtesy of A.Dunphy, PocketMedic, H.Ferguson, J.Rodrick, Sue Dorfman/Atavia

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

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5 8

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Volume 8 Issue 1

Machine learning helps detect lymphedema

Using algorithms in a clinical setting A study for advancing technology in diagnosis

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Ten steps to effective advocacy

Turning passion into progress

10

Tips from someone who’s been in your shoes.

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12

Reimbursement improves in Quebec

A full wardrobe of compression solutions.

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Study report:

The meaning of success in lymphedema management.

13 18

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Canada’s first Research Chair in lymphatic disorders

An exciting opportunity for lymphedema research.

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The mystery is solved

A case study of delayed diagnosis and treatment A patient impacted by underrepresentation of lymphedema.

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It’s complicated

Finding balance in your life doesn’t always come naturally A lymphedema diagnosis that came with an important lesson from the Universe.

TO ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: Pathways Subscriber Password: Technology

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Technology

Technology, films and lymphedema

New ways of disseminating standardized information

By Melanie Thomas

W

hy might we need technology in lymphedema? Accessing lymphedema services and specialists can be a long journey, and unfortunately, services are busy, and the demand usually exceeds availability, making for long waits for assessment and treatment1. Many people will search “Dr. Google,” but often cannot access the advice that they need and what they are able to find can be overwhelming.

In Wales, although we do have services across our country serving a population of 3.2 million, there are still not enough resources to go around. Thus, as the referrals for lymphedema assessment and treatment rose, Lymphoedema Network Wales needed to review the available options in supporting patients. One such option was improving the technology surrounding lymphedema.

Technology is everywhere and unsurprisingly around 80% of the population now have a smart phone or similar device.

There are around 2.5 billion smart phone users in the world and of those, many use their mobile device for accessing the Internet and downloading health apps2. It is important to recognize that there are no perfect lymphedema apps. Many are for breast cancer related lymphedema patients,

and, as such, are not suitable for all patients.

There are also a limited number of evidencebased films in comparison to films endorsing lymphedema products. Within Wales, we provide standardized information leaflets for all our patients but are often still asked whether there is an electronic version, or if they can be downloaded as a film. Additionally, when language or literacy is an issue, a medical leaflet or the Internet can cause confusion3.

Now, if you have ever met me or heard me present, you will know that I am extremely passionate about lymphedema and can be very persuasive. Many of my patients tell me “Aw Mel, I feel so motivated when I am with you, but then I forget about things when I go home. I wish I could take you home with me!” Therefore, when an opportune meeting with a media producer occurred, I realised that instead of the uninspiring paper leaflets, we could create stories that would come to life on screen (and patients could take me home with them).

Fortuitously, the Welsh Government had just advertised for applications for Health Technology and Innovation Projects. Our grant submission focused on why evidence based technology could enable people with lymphedema to feel more in control of their

Melanie Thomas is the National Clinical Lead for Lymphoedema in Wales, UK and runs Lymphoedema Network Wales. A physiotherapist by background she has been instrumental in ensuring all patients with lymphedema in Wales have access to standardized lymphedema services. Mel has just completed her doctorate exploring the impact of the lymphedema risk reducing recommendations with breast cancer patients.

Wi n t e r 2 0 1 8 / 1 9

condition. With a sprinkling of luck, we acquired £84,000 to develop 18 videos.

Working with a company called PocketMedic (the trading name for eHealth Digital Media Ltd.) not only allowed the production of these video films but also created a digital platform where all the films are stored. PocketMedic became the vehicle by which lymphedema clinicians can deliver personal film-based prescriptions to engage patients in their own health outcomes and promote positive behavioural change.

PocketMedic became the vehicle by which lymphedema clinicians can deliver personal film-based prescriptions to engage patients.

All lymphedema clinicians can provide the film links to their patients. The link can be typed into an Internet browser on a mobile phone, computer or tablet, enabling the patients to watch as many films as they need. Furthermore, the films can be shared with family and friends so that they too can understand what lymphedema is all about.

Filming began in 2016 and the stars are people living with lymphedema. In each film, patients shared their stories along with healthcare professionals4. Each film lasts on average five minutes with the longest being 12 minutes. All the content was scrutinized by the seven national lymphoedema services in Wales, ensuring evidenced based information was being shared.

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Available Films n

What is Lymphoedema?

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Holidays and Lymphoedema

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Skin Care

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Exercise class - Lower Limb

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The Joy of Exercise

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Exercise class Upper limb

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Compression Garments

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Lymph Assist/Pump Therapy

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Lower Limb Simple Lymph Drainage

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Reducing the Risk of Lymphoedema

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Upper Limb Simple Lymph Drainage

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MLD in Action (Manual Lymphatic Drainage)

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Healthy Eating

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LVA (Lymphatic Venous Anastomosis)

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Lipoedema

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A Child’s View of Lymphoedema

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An Adventure Day for Teenagers with Lymphoedema

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Families with Lymphoedema

Lymphoedema Network Wales also felt it was important that there were simplistic ways to describe how lymphedema and cellulitis occur, so PocketMedic used graphics to make it easy for all patients to understand.

Additionally, as Lymphoedema Network Wales had just commissioned a National Lymphoedema Paediatric Service, the team wanted films suitable for children.

PocketMedic very cleverly created cartoon characters with children’s voices to create an informative film.

As with all new initiatives, data collection and evaluation is extremely important to determine any benefits. PocketMedic created an easy way to capture feedback from people who watched the films. After each film, the following data (see chart) is captured and sent back to Lymphoedema Network Wales on a monthly basis.

Initial feedback suggests that some viewers’ knowledge of lymphedema is increased after watching the films. Most viewers indicated ‘same as usual’.

Since the films launched in 2017, over

80% 70%

More/Better than Same as usual

Feedback

Worse than usual

60% 50% 40% 30% 20% 10% 0% My swelling is

My knowledge of swelling is

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

My skin condition is

Managing my weight is

My movement and function is

5,500 people have viewed the films, and 56% of those have watched them more than once. Lymphedema clinicians now feel confident that the information provided to their patients is not only evidenced based, but is in a format that is easily accessible and can motivate people to take care of their own health.

Other benefits of the production of these films have supported an on-line, E-Learning education tool for all healthcare professionals.

The information provided is basic, but

highlights the impact of having lymphedema or chronic oedema and the four cornerstones of lymphedema management. This E-Learning module is only available in Wales, but we are actively working with our partners to make this accessible for everyone everywhere!

For those keen to see the quality of the films, the compilation film can be accessed at www.medic.video/lymph.

These videos are an example of using technology and evidenced based information on lymphedema to empower and inform patients. The E-Learning module also demonstrates that technology in the field of lymphedema can improve knowledge and understanding of the condition for healthcare professionals.

If you require any further information, please contact us at Lymphoedema.

Network.Wales@ wales.nhs.uk. LP A full set of references can be found at www.lymphedemapathways.ca Wi n t e r 2 0 1 8 / 1 9

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Technology

Machine learning helps detect lymphedema among breast cancer survivors

Using algorithms in a clinical setting

A study for advancing technology in diagnosis

By Jeanna Qiu and Deborah Axelrod

This article is a synopsis of an innovative study led by our research team at New York University and published in the journal mHealth, titled “Machine learning for detection of lymphedema among breast cancer survivors.”

Introduction Symptoms are subjectively perceived indicators for abnormal changes in body functioning due to illness or side effects from medical treatment. Lymphedema is associated with more than 20 distressing symptoms and is one of the most distressing and dreaded late adverse effects from breast cancer treatment.

Currently there is no cure for lymphedema, but early detection can help patients receive timely intervention to effectively manage lymphedema. In our digital era, integrating technology into health care has led to advances in detecting and predicting various medical conditions. Machine learning is of interest to researchers due to its ability to construct algorithms that continually improve predictions and generate automated knowledge through data-driven predictions or decisions with incoming data—in this case, lymphedema symptom reports.

Machine learning is particularly beneficial when there are many relevant factors that are not independent, which is true for lymphedema symptoms. Real-time symptom report refers to the report of symptoms that patients are experiencing at the time of reporting. The use of machine learning integrating real-time patientcentered symptom report and real-time clinical analytics to develop real-time precision prediction may improve early detection of lymphedema and long term clinical support for breast cancer survivors who face lifelong risk of lymphedema. Our study aimed to appraise the accuracy, sensitivity, and specificity to detect lymphedema status using machine learning algorithms based on real-time symptom report.

Methods In this study, we used a web-based tool to collect information from 355 women who had undergone treatment for breast cancer,

Jeanna M. Qiu is a junior at Harvard College studying Chemical and Physical Biology, with a Sociology secondary. Since high school, she has been a research intern for the lymphedema research team.

Dr. Deborah Axelrod is a board-certified surgeon specializing in breast diseases and breast cancer and Professor of Surgery at New York University School of Medicine. Dr. Axelrod has published over 80 articles in peer-reviewed journals on breast cancer and lymphedema.

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

including surgery. In addition to sharing demographic and clinical information, including whether they had been diagnosed with lymphedema, participants were asked whether they were currently experiencing 26 different lymphedema symptoms.

Statistical and machine learning procedures were performed for data analysis.

Five different classification algorithms of machine learning were compared: Decision Tree of C4.5, Decision Tree of C5.0, gradient boosting model, artificial neural network, and support vector machine. We also compared the algorithms with a conventional statistical approach, Youden’s method, which determines the optimal threshold for the symptom count based on the receiver operating curve.

Results We found that all five machine-learning approaches outperformed the standard statistical approach, and the artificial neural network achieved the best performance for detecting lymphedema. The artificial neural network was 93.75 percent accurate, correctly classifying patients to have true lymphedema cases or non-lymphedema cases based on the symptoms reported. Thus, a well-trained artificial neural network classifier using real-time symptom reports can provide highly accurate detection of lymphedema.

Such detection accuracy is significantly higher than that achievable by current and often used clinical methods, such as healthcare providers’ observation of swelling.

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Clinical Implications Findings of our study demonstrate that an mHealth system designed for real-time lymphedema risk detection is feasible, reliable, and valid. A well-trained Artificial Neural Network classifier using real-time symptom report provided highly accurate detection of lymphedema. Our study provides a novel, pragmatic and cost-effective realtime lymphedema risk detection employing a machine learning algorithm that could be used by patients or clinicians anywhere and anytime. Conducting such real-time

lymphedema assessment encourages patients to monitor their lymphedema status without having to visit a healthcare professional, but based on patients’ symptoms and resulting risk for lymphedema, could alert those at risk to schedule formal clinical assessment. Such an approach has the potential to reduce healthcare costs and increase the likelihood of early detection and intervention, which could reduce the risk of lymphedema progressing to more severe stages. LP

This study was supported by National Institutes of Health (NIMHD P60 MD00053803 and NCI1R01CA214085-01), Judges and Lawyers for Breast Cancer Alert, Pfizer Independent Grants for Learning & Change (13371953 The-Optimal Lymph-Flow™) and the Pless Center for Nursing Research of NYU Rory Meyers College of Nursing.

Our study provides a novel, pragmatic and cost-effective real-time lymphedema risk detection employing a machine learning algorithm that could be used by patients or clinicians anywhere and anytime.

To view the full article: Fu, M.R., Wang, Y., Li, C., Qiu, Z., Axelrod, D., Guth, A.A., Scagliola, J., Conley, Y., Aouizerat, B.E., Qiu, J.M., Van Cleave, J.H., Yu, G., Haber, J. (2018). Machine learning for detection of lymphedema among breast cancer survivors. mHealth, 4:17, 1-11. doi: 10.21037/mhealth.2018.04.02 View this article at: http://dx.doi.org/10.21037/ mhealth.2018.04.0 PubMed PMID: 29963562; PubMed Central PMCID: PMC5994440.

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Advocacy

J

Steps to effective advocacy A US citizen turned passion into progress Tips from someone who’s been in your shoes

By Heather Ferguson

I

n 2006 I had never heard of lymphedema, but after the birth of my twin boys, Devdan and Dylan, that would soon change. Dylan was eventually diagnosed with primary lymphedema and prescribed his first compression garments at seven months of age.

I spent the better part of Dylan’s first two years of life appealing our insurance company’s denial of coverage for his garments, which led me to the decision to become an advocate. In 2009, I worked with my State Representative to introduce and pass a North Carolina Lymphedema Treatment Mandate, which requires all private insurance policies in the state to cover lymphedema compression supplies.

Later that year, I met with my Congressman, who agreed to sponsor a federal bill aimed at improving coverage nationwide.

In early 2010, the Lymphedema Treatment Act was introduced and that Spring, our fledgling group took its first trip to Washington, DC. I feared that a bunch of patients and caregivers wouldn’t be taken seriously, but I couldn’t have been more wrong. What I thought would be our greatest weakness has turned out to be our greatest strength. We were warmly welcomed by lawmakers and their staff who Heather Ferguson is the Founder and Executive Director of the Lymphedema Advocacy Group, an all-volunteer nonprofit organization based in the United States comprised of patients, caregivers, healthcare professionals and industry partners. Their primary objective at this time is improving insurance coverage for lymphedema compression supplies through passage of the Lymphedema Treatment Act, a bill currently before the United States Congress. Heather welcomes your inquiries and you may contact her directly at Heather@LymphedemaTreatmentAct.org.

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found it refreshing to meet with regular folks that were personally affected by the issue they came to speak about.

Since that first trip to our Nation’s capitol building, we’ve been back dozens of times, had hundreds of meetings, and learned a lot in the process. Most importantly we learned that we all have the power to make a difference, and when you are willing to effectively share your personal experience with lymphedema it can be a powerful agent for change.

In Canada and elsewhere, just as in the United States, insurance coverage for lymphedema compression supplies varies, and for some is nonexistent. As we work toward closing these coverage gaps and ensuring that all patients have access to their vital compression supplies, keep these things in mind when meeting with policy makers.

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1C heck all personal politics at the door. Lymphedema is not a partisan issue; so don’t let your political persuasions enter the picture. Make sure to keep all language politically neutral.

2D on’t go in with assumptions. I’ve been surprised a number of times. There are members of the U.S. Congress who I thought would be shoo-ins for supporting the Lymphedema Treatment Act, yet still haven’t, and others who I thought never would but have.

3 Come prepared, be concise, and make sure to save time for questions.

Presenting your information in a succinct manner, and in a logical order, makes a difference. I encourage all new advocates to make an outline of what they hope to cover in a meeting, to help them organize their thoughts ahead of time. Also, make sure to leave time for questions, as that is often the most crucial part.

4 A picture is worth 1,000 words, especially when it comes to lymphedema.

Pictures can speak for themselves and be very effective supplements to your oral and written information.

5R elax and be yourself. Policy makers and their staff don’t expect you to be an expert. It’s okay to not have the answer to every question. Don’t be tempted to guess or make one up. In this situation simply say you don’t know, but that you will try to find out and get back to them.

6 Stay on topic. Many lymphedema patients have spent years or even decades hardly ever speaking about their condition, and once they start the floodgates are open! It’s easy to overwhelm a listener, especially considering that many people will have little or no prior knowledge about lymphedema. Stick to the information that is relevant and supports your objective.

7M ake sure your “ask” is well thought out and realistic. Tell them what they

can do to help. We advocate to effect positive change. To make that happen we need to understand who can help us make those changes and how, and then appropriately direct our efforts.

8 Do some background research and look for ways you can draw connections to the policy maker’s priorities or personal background. Few people know the word lymphedema, but a surprising number of people have some connection, or a reason to take a personal interest. Sometimes you need to connect the dots for them though.

Help them help you.

9 If you get a “no”, ask why. Sometimes the most important information is gleaned from disappointments. Learn from it, and use it to better your advocacy, so that in the future it will be a “yes.”

J Persistence is key! Policy changes usually take considerable time and effort. It’s going to be a marathon—not a sprint, so approach it with that mindset.

Celebrate small victories knowing that each step moves you closer to the goal.

Congressman Dave Reichert, lead sponsor of the Lymphedema Treatment Act, surrounded by members of the Lymphedema Advocacy Group.

The Lymphedema Treatment Act is the most supported healthcare bill currently before the United States Congress. With good luck, it will be passed by the time you are reading this. If it is not, we will continue our work until the day all lymphedema patients have the insurance coverage they need and deserve! LP Editor’s Note: In Canada healthcare is a provincial matter requiring that advocacy be at the provincial level. However Heather’s points are excellent and applicable for all advocates.

Visit www.lymphedematreatmentact.org for more tips and to access free advocacy training webinars.

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L y m p h e d e m a p a t h w a y s . c a 11

Advocacy Update

Reimbursement improves in Quebec

A full wardrobe of compression solutions The province of Quebec finally has a program to help with the purchase of garments for lymphedema. Spanning more than 10 years, the advocacy battle to achieve this has been laborious, but so worthwhile!

The initial pilot project, Program for bandages and compression garments necessary for the treatment of lymphedema, included only one garment per year (2 for children).

The newly announced project, redesigned by the Lymphedema Association of Quebec (LAQ) and the Quebec Health Insurance Plan, now offers a full wardrobe of compression solutions.

By Rachel Pritzker and Anne-Marie Joncas

Adults are allotted coverage of 75% up to a pre-established maximum, for the following supplies per affected limb in one 12-month period: • 1 set of multi-layer bandages • 1 night-time compression garment • 3 elastic day-time compression garments • 1 accessory for compression garments • 1 non- elastic compression garment (Velcro) For children, the number of supplies is double that of adults in one 12-month period, with the possibility of 100% coverage or up to a pre-established limit.

To clarify; if a person must wear several different garments at the same time for the same limb, these garments will be considered separately. For example, if the patient needs to wear a glove and a sleeve at the same time, over a period of 12 months s/he will be entitled, to: • 3 gloves and 3 day-time sleeves • 1 glove and 1 non-elastic sleeve • 1 glove and 1 night-time sleeve If the patient has private insurance, their insurance will be able to cover the part not covered by the Quebec Health Insurance Plan. For more details visit: http://www.ramq.gouv.qc.ca/ en/citizens/aid-programs/compression-garments-lymphedema/Pages/compression-garmentstreatment-lymphedema.aspx.

This complete wardrobe of lymphedema garments would have never seen the day without the support of the members of the LAQ and their supporters. This is a great victory! LP

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The Canadian Lymphedema Framework is releasing its first ever calendar featuring: n inspirational patient stories n practical hints and tips n helpful resources n and more…

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*Taxes included, shipping extra.

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Research

Study Report:

The meaning of success in lymphedema management This article is a condensed version of the original article published in Journal of Lymphoedema (Vol. 13 No. 1) and has been reprinted with permission.

By Dorit Tidhar and Jane Armer

L

ymphedema affects more than 120 issues. A woman can experience fear and million people worldwide (International loss of self; however, she might feel that Lymphedema Framework [ILF], 2012). It success is being able to hold her grandchild often develops into a chronic condition, or reduce pain. Even if we, as clinicians requiring lifelong management (International and administrators of healthcare systems, Society of Lymphology [ISL], 2013). think we understand what people with The most common treatment for lymphedema experience, it does not mean lymphedema is complex decongestive that their definition of success is obvious. therapy (CDT).

The only way to explore what a person with The patient definition of treatment success lymphedema feels and values as a success has not yet been reported. Several is to ask him/her to tell us. This quantitative studies examined review helped the authors to outcomes of lymphedema focus interviews on issues Phenomenology treatment looking at that concern individuals is a method that minimal clinical important living with lymphedema, explores individuals’ differences (MCID and and hopefully, with this experiences; measurement differences knowledge, clinicians it does not deal (Taylor et al, 2006, can grasp this unknown with events Devoogdt et al, 2010, Katzperception. or facts.

Leurer and Bracha, 2012). Few The biopsychosocial qualitative studies have examined model for lymphedema (See the experiences people diagnosed with Figure 1 on page 14) is a theoretical lymphedema go through when dealing framework, which looks at all aspects of the with the consequences (eg. symptoms) and management for lymphedema. This model the management of lymphedema. helps clinicians understand what concepts The fact that women reported their come into play when treating a person challenging experience of lymphedema does with lymphedema. Nevertheless, an open not in any way mean that their perception mind should be kept, as the person who of successful outcome will address those has lymphedema may consider different Dorit Tidhar is Physiotherapist and Coordinator of Lymphoedema Services, Department of Physical Therapy, Maccabi Healthcare Services, Netivot, Israel.

Jane M. Armer is Professor, Sinclair School of Nursing, University of Missouri-Columbia, USA; Director, Nursing Research, Ellis Fischel Cancer Centre; Director, American Lymphedema Framework Project.

Wi n t e r 2 0 1 8 / 1 9

outcomes as his/her goals or define success differently than what the therapists or the healthcare system would.

Therefore, the purposes of this study were to understand: • What do people with lymphedema consider to be the meaning of success in the intensive phase of lymphedema management?

• What do people with lymphedema consider to be the meaning of success in the longterm phase of lymphedema management?

Method Study design The qualitative study design used a phenomenological method. Phenomenology (Richards et al, 2012) is a method that explores individuals’ experiences; it does not deal with events or facts, but rather the meaning perceived by the individual (Crabtree, 1999).

Lack of ability to generalise the conclusions is a weakness of this method.

Overstating conclusions needs to be avoided, as this method is very focused on the individual experience.

Subjects A purposeful sampling was used in order to capture different aetiologies, areas of swelling and gender, hopefully encompass variation in experiences, aspirations and expectations of people living with lymphedema. People were included if they spoke Hebrew, had gone through intensive lymphedema treatment, and were in the long-term management phase.

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

FIGURE 1

BioPsychoSocial model of secondary lymphoedema (Armer, 2010).

Predisposing factors

• Family or personal history of lymphedema • Genomic variation • Pre-morbid conditions • Medications causing fluid retention/imbalance • Body mass index • Type of surgery and node dissection • Re-excision of tumor for clear margins • Breast radiation • Axillary radiation • Chemotherapy • Post-op trauma and infection(s) • Weight gain during/after treatment • Prior injury, trauma, surgery to affected side

Two themes concerning the meaning of success in the intensive phase emerged from the data: • Hope • Lack of clarity

Limb volume change and symptoms Psychosocial adjustment

Problem solving

Breast cancer post-treatment outcomes

Protective mechanisms

Overall quality of life

Functional health status

Social support

Coping effectiveness and symptom management

Data collection and data analysis Physiotherapists specialising in lymphedema management throughout Maccabi Healthcare System in the South district of Israel were contacted by email and asked to suggest suitable participants.

All interviews were conducted by the primary investigator and took 45–90 minutes. All participants signed an informed consent and were informed about the study procedure, anonymity and confidentiality.

Semi-structured interviews with openended questions followed the interview guide based on Leventhal’s Self-Regulation model (Cameron and Leventhal, 2003) from understanding the cause of an illness through placing goals and coping.

Analysis The content analysis approach was used; Attribute codes were used to identify severity 14 L y m p h e d e m a p a t h w a y s . c a

diagnosis ranged from one to 35 years. All experienced at least one intensive therapy, (most more than one) with an average period of one month (range of visits from daily to twice a week; bandages kept on 24 hours a day, everyday) and all were in their long-term phase of therapy.

and grade of lymphedema, aetiology, time since diagnosis, phase of treatment, etc. and value coding representing values, beliefs, and attitudes, helping to understand what people considered important or meaningful. Reflexivity was used and after the interview was over, an open discussion ensued, and specific advice was given to the participant, as appropriate.

For validation, the primary investigator recruited and met with two content experts (lymphedema therapists who had more than 15 years of clinical experience).

Results Ten people (three men and seven women) diagnosed with lymphedema were interviewed. Their lymphedema was due to diabetes, breast cancer, skin infection, obesity, was associated with lipedema, or primary in origin. Time since lymphedema

Participants’ responses to the initial swelling led to subcategories of detachment and bad feelings/experiences emerged. Some of the participants had gone through a long and exhaustive journey to be diagnosed before being referred to treatment. An 80-yearold retired school manager told us: “I was actually rolled from one physician to another.

For years, I walked around with swollen and painful legs and actually started to feel that I had elephant’s legs — electric poles.” After these journeys and finally being referred to a treatment, hope can be expected to arise.

Hope All participants walked into the physiotherapy clinic with the expectation to get better.

A 77-year-old retired woman who had breast cancer treatments 30 years earlier, but had lymphedema only in the past 2 years, explained her expectations: “I wanted for a miracle to happen and that the swelling will disappear.”

Lack of clarity When asked about the goals of treatment, and whether their goals met the physiotherapist’s goals, participants all answered that the goals were the same.

The plan of treatment was clear to most participants and included daily bandaging (by the therapist and by the patient or a caregiver) and manual lymph drainage.

Even though the plan of the intensive phase of the treatment was clear, the experience of moving into the long-term management left the participants with feelings of lack of clarity and abandonment.

Wi n t e r 2 0 1 8 / 1 9

Only two participants felt that the decision of treatment cessation was a joint one (therapist’s and patient’s). The remaining participants felt that the cessation of intensive treatment was an administrative decision, the treatment quota was over, or that it was a professional decision by the physiotherapist.

A 75-year-old woman shared: “The therapist said that the treatment was over after one month. I would have liked to continue more to feel that there is no need for more.

But they give only 10. They (the “system”) won’t give more than 10.”

Two themes about the meaning of success in the maintenance (long-term) phase emerged from the data: • Empowerment • Maintenance vs back to normal The participants in this study were full of hope before they started the intensive therapy. They defined the meaning of

Wi n t e r 2 0 1 8 / 1 9

success as an improvement, or disappearance of the swelling. However, there was lack of clarity as to the transition to the longterm management phase.

Empowerment Undoubtedly, all participants managed their lymphedema. They seemed to have incorporated the management into their life routine. All used compression (garments or bandages). One woman exercised on land, three in water, two performed self-massage and one used a compression pump.

When they talked about their selftreatment, they knew what they needed: what kind of garment; how many times to exercise; what makes them stable. The definition of success for long-term management was “not getting worse”, “stable”, “maintain”.

An 80-year-old woman described how she achieves the goal of maintaining.

“First of all, walking in the water three times a week; receiving my rights: receiving treatments when I need and changing garments every six months.”

When asked what she would consider the perfect plan in a perfect world she said: “To receive a massage every week and even twice a week, compression bandages, and garments. If I will have that, I will be happy.”

In a perfect world with no limitations, subthemes that emerged were: cure, massage, compression garment and bandages that will fit perfectly and will not be cumbersome, regular check-ups and a free membership to the pool.

All participants treated themselves.

They did not let the swelling get out of control. Does that mean they accepted their lymphedema as a chronic condition for life?

Maintenance vs. back to normal Moving into the long-term phase might have been unclear for the participants; however, once they were in it, they seemed to know exactly where they were going and what they needed.

When asked about their expectations in the long-term phase, they talked about acceptance, about having no other choice

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

myself over the years.”

The participants learned to accept their condition and got tools of how to treat their lymphedema in their long-term management.

A strong feeling of satisfaction arose, as all participants found some way of dealing with their chronic condition. but to deal with their condition. One of the participants, a 64-year- old said: “I understand that the swelling will not disappear. I understand that I need to work on my lymphedema every day — this is my work (every morning self-massage and exercises, during the day I wear my compression garment, sometimes I bandage at night and exercise in the pool as well).”

For a 77-year-old woman, it was more than acceptance; one could understand that she was tired of hoping. She said: “Expectations faded away. I still had hope that the compression garment and the lymph pump will make the swelling go away.

I had hope all the time. I kind of lied to

Discussion While trying to analyse and integrate the data, a strong feeling of satisfaction arose, as all participants found some way of dealing with their chronic condition. However, one could not help feeling sad, specifically due to the tiredness of these people who had expected to get better, defined the meaning of success as disappearance of symptoms and getting their life back, and whose expectations faded away in time and over treatments. The enthusiasm that they had at the beginning when they had found someone who could help them disappeared; but then, they realised over the years that lymphedema can get worse, and that having it under control and not having exacerbation is a success. Although people do accept their lymphedema, one could feel there is a disappointment component

in it. When trying to figure it out, it felt as if all the participants were not content with the transition management into the maintenance/long-term phase.

Bordin (1979), showed that a strong working alliance developed between a psychologist and a patient was proven to be a major factor in changing behaviour in psychotherapy. Bordin argued that this alliance can be generalised across therapy systems. Bordin suggested three components to a therapeutic alliance: •T herapist-patient agreement on goals of treatment. All participants in our study stated that there was agreement on goals of treatment in the intensive and the long-term management.

•T he affective bond between patient and therapist. All the participants either stated that they were fond of their therapists or respected her decisions and that he/she was nice, or one could understand from the way they described the journey that they felt a bond with their therapist.

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•T herapist-patient agreement on interventions. There was agreement on ways of intervention in the intensive and in the maintenance phase. However, the transition into the maintenance phase seemed to be lacking agreement. One could feel the disappointment when the treatment ended, as if they were left alone to deal with their problem. The participants said that sessions were ended by the system or the therapists, but not in an agreement with the patient that it was time to end.

One therapist who validated the themes and conclusions from the data felt angry that although the participants seemed to know exactly what was good for them, and how to treat themselves, they felt unfulfilled with the “system”. She felt that there is a need to match expectations of the treatment process, as well as goals and over the period of sessions.

The second therapist who validated the themes mentioned that it was wonderful to see the reported independence that

emerged from the interviews. Overall, the researchers believe that most of the components of the therapeutic alliance existed throughout the treatment process for the participants in this study. However, the therapist-patient agreement component, specifically the transition from intensive to long-term management, was lacking clarity and generated negative feelings by the participants.

Conclusions Only 10 participants were interviewed as part of this study; therefore, conclusions are difficult to generalise as participants were expressing their own experience and views.

In the intensive therapy phase people are hopeful and optimistic as to achieving good results (disappearance or improvement of their lymphedema). Most of the participants experienced more than one intensive treatment period, but each time there is still hope for improvement. The meaning of success in the maintenance phase seemed to depend on whether

there was a true acceptance of the chronic condition; in this case, success meant stability (not getting worse), while those who still had hope wished for things to go back to normal. Either way, empowerment was a strong theme: people knew how to treat themselves, knew what was good for them, and what made them happy.

Lack of clarity as to the transition to self-management could be avoided by reassessing the condition often during the treatment process, talking and matching expectations over time and, most importantly, deciding together how and when to move into the long-term management phase. LP Acknowledgements The authors express their gratitude to the people with lymphedema who participated in the study.

The full unabridged version of this article, including additional figures, tables and references can be found at www.lymphedemapathways.ca

Congratulations

2018 Caregiver Award Winners CAREGIVER OF THE YEAR HANNAH TRUMPER, ON FAMILY CAREGIVERS Deborah Lee Prokosh, BC • Rosario Fernandes, BC • Stephanie Rees, AB • Christina Ryan, AB • Garry Chmara, AB • Julie Buium, SK • Patricia Bridgman, QC • Kanwaljit Jeji, ON • Sherri Munro, ON • Justin, Carissa & Nicholas Gauthier, ON • Mark & Faye Dubroy, ON • Vickie Micallef, ON • Kelly Kearns, YT • Rachel Saunders, NL • Edie Newton & Eugene Organ, NL • Mary Macri, BC • Young Carers Program Members, ON

PROFESSIONAL CAREGIVERS Brian Delahey, ON • Tobi Johnston, BC • Lorrie Pratt, AB • Albert Feldman, AB • Mary Beth Costigan, NL • Eileen Toraja, NS • Amanda Walsh, NB Canada Cares is a program of the Canadian Abilities Foundation

canadacares.org Wi n t e r 2 0 1 8 / 1 9

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

Research

Canada’s first research chair in lymphatic disorders

An exciting opportunity for lymphedema research

By Ian Soles

A

groundbreaking announcement was made October 10, 2018 by the offices of the Dean of Faculty of Medicine and Dentistry and the President of the University of Alberta.

The Dianne and Irving Kipnes Foundation has donated five million dollars to establish an endowed research chair in lymphatic disorders at the Faculty of Medicine and Dentistry, University of Alberta. In addition, the Kipnes Foundation will donate an additional one million dollars as an initial establishment fund that will be matched by a one million dollar contribution from the University Hospital Foundation for a total contribution to lymphatic research of seven million dollars.

The endowed chair will be named The Dianne and Irving Kipnes Chair in Lymphatic Disorders honouring their generosity and determination to effect fundamental changes in the care of patients suffering underreported, under recognized, and under diagnosed medical problems in the lymphatic system such as lymphedema.

Recognizing that there lies both significant unmet medical needs and exciting potential for developing novel diagnostics, preventive and therapeutic interventions, the Dianne and Irving Kipnes Chair in Lymphatic Disorders will bring multiple stakeholders together who share a common vision to tackle both foundational science and technology development. The research emphasis of this Chair will encompass a full range of lymphatic investigation including both basic science

Dianne and Irving Kipnes. and clinical research of primary and secondary lymphedema.

Alberta’s top two research universities, University of Alberta and University of Calgary, have both benefited from the generous gifts from the Kipnes Foundation.

In 2013, the Dianne and Irving Kipnes Foundation donated 5 million dollars to establish the Lymphedema Imaging Suite, a powerful set of microscopes tailored to studying the structures and functions of the lymphatic system, at the Snyder Institute for Chronic Diseases, University of Calgary.

The Alberta Lymphedema Network (ALNET), a research collaborative founded following the Kipnes gift to the University of Calgary, has grown to attract a sizable local group of like-minded scientists, physicians, and other healthcare practitioners sharing expertise in

Ian Soles is a Vodder certified therapist, President & Clinical Director of Salutaris Centre for Lymphatic Therapy and co-lead of the Alberta Lymphedema Network, a multidisciplinary lymphatic research and education initiative. He serves on the Canadian Lymphedema Framework Education Working Group.

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lymphatic biology, current therapies, imaging technologies, metabolomics, proteomics, and nanotechnology. ALNET has been actively sponsoring and facilitating basic research and clinical trials related to lymphedema and other lymphatic disorders such as chylothorax and will continue to dedicate its efforts to supporting lymphatic research by becoming an engaged partner to the endowed Kipnes Chair program. As well, the Kipnes Chair will become a collaborative member of the Cancer Research Institute of Northern Alberta (CRINA) with an appointment to the Department of Oncology, Faculty of Medicine and Dentistry, University of Alberta.

At a time when public funding for academic research is quite limited, the new endowed Kipnes chair is no doubt an energizing initiative signifying the Kipneses’ unwavering support for basic science research and clinical development. The endowed chair program is expected to attract suitable candidates from a widerange of disciplines as well as high calibre researchers in the lymphatic field to Edmonton further expanding the scientific and clinical impact of current Albertan and Canadian research teams. LP Wi n t e r 2 0 1 8 / 1 9

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Case Study

The mystery is solved

A case study of delayed diagnosis and treatment How a patient was impacted by underrepresentation of lymphedema

By Julia Rodrick

L

aura (a pseudonym) is a 48-year-old woman referred to our clinic, presenting with a first-time diagnosis of (complicated) primary lymphedema of the right lower extremity. She shared her story, reporting that she couldn’t remember a time when her right foot and ankle were not noticeably swollen.

Laura remembers doctor visits and “special shoes” that her parents would have to “save up to purchase.” Although Laura struggled to keep up with the other kids and walked with a limp, no treatment interventions were offered until Laura turned 12 years old. In 1980, she presented with a painful, palpable lump in the right inguinal region. The doctors reassured Laura’s parents that she did not have cancer, as they had feared, but rather a “rare, mysterious condition” that caused problematic swelling and an “infected” lymph node. She was treated for the infection and was directed to begin wearing compression stockings. As she grew into adulthood, it was still a challenge to find shoes that fit. The compression stocking and ill-fitting shoes were uncomfortable, especially during the long hours of nursing school. To make matters worse, Laura was hit be a drunk driver on

the day after she passed her state nursing board exams. The accident caused extensive injuries, including multiple right leg fractures.

She spent the next nine months wheelchairbound, followed by six more months ambulating on crutches. She tried to resume her nursing career, but was challenged with pain, reoccurring episodes of cellulitis, and increasing right lower leg swelling over the years. Her primary physicians offered limited solutions to address these issues. She is now married and helps with the family business.

She is also an active mother of three children, one of whom is disabled.

Laura shared that she felt that the “rare, mysterious condition” of her right foot, rather than the accident, was the main cause of an unresolvable cycle of disability. In July of this year, an unexpected cardiac condition resulted in a consultation with a cardiovascular specialist. The cardiologist noted the presentation of Laura’s right foot and lower leg. He ordered additional tests, including lymphoscintigraphy. This test was “an imaging technology using contrast material to detect lymphatic malfunction.”1 In Laura’s case, the test documented the imaging of lymphatic

Julia Rodrick, OTR/L, CLT-LANA, WCC is Senior Lead Therapist, Lymphedema Program Springfield Clinic Rehabilitation Services in Springfield, Illinois.

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

abnormality and dysfunction of the right foot, with delayed response. It was concluded that the abnormality was distal to the orthopedic injuries sustained in the accident, determining that Laura’s mystery condition was congenital primary lymphedema of the right lower leg, complicated by trauma. The mystery of the swollen foot was solved. Laura was relieved to learn that primary lymphedema, although incurable, can be treated and managed.

She was referred to our lymphedema treatment clinic to begin occupational therapy.

Her hope was to “fit into a normal size pair of jeans and a good pair of shoes.”

Upon arrival for the initial occupational therapy evaluation, Laura was accompanied by her husband. She complained of metatarsalgia, ankle stiffness, and pain to the right knee during ambulation. Her foot pain was centered over the metatarsal region. Her toes did not engage the floor during weight bearing and ambulation due to significant swelling to the sole of the foot. There was limited flexion and extension of the toes due to a dorsal foot lobule and increased circumferential edema girth. Characteristic of progressive Stage II lymphedema, the dorsal foot resisted indention with palpation. The retro-malleolar region was densely indurated2. She offered a positive Stemmer sign of thickening, immobile Wi n t e r 2 0 1 8 / 1 9

skin folds to the right toes2. There was also a significant circumferential girth differential in right-to-left bilateral comparison of the entire lower leg (Figure 1).

Laura’s right ankle seemed unstable as she walked and appeared to collapse with inversion. She complained that walking up the incline ramp or moving from sitting to standing was difficult and painful to the right knee. She limped due to the pain and muscle imbalance. When observed, Laura assumed a moderate hyperextended knee pattern and stood with a “locked knee” position, suggesting weakness of the gastrocnemius and quadriceps muscle group4. This may have been a residual effect of the orthopedic injuries sustained during the motor vehicle accident as a young adult and was complicated by the lymphedema.

Laura and her husband were educated in the principles of complete decongestive therapies (CDT) and introduced to the components of manual lymph drainage (MLD)3, therapeutic compression, and exercise to support lymphatic dynamics to promote lymphostatic decongestion. Skin care needs were also addressed and introduced as part of her developing plan of care.

Although a plan of treatment consisting of participation in therapy three to five times per week seemed ideal, Laura’s need to care for her disabled child created a challenge in time management. It was mutually agreed that she would participate in direct treatment sessions two times a week, but would complete structured, self-directed MLD every day as she and her husband showed competency of the treatment method. They received their first

MLD instruction through demonstration and handouts that offered step-by-step diagrams designed for Laura’s MLD program. Laura’s husband also videotaped the demonstration for a visual aid at home.

The MLD treatment followed traditional sequence designs3,5, including anatomical pre-treatment of the neck, viscera, and deep abdomen, as well as the right axillary nodes. Establishing the right inguino-axillary anastomoses and beginning treatment of the left inguinal lymph nodes was the next step. This was followed by anterior inter-inguinal anastomoses. Areas of density were given special attention with deeper techniques to soft the tissues, promoting lymphostatic decongestion.

The treatment extended the entire length of the right leg and included the posterior aspect.

In partnership, Laura and her husband learned how to apply compression in the first phase of treatment. This included a chip bag-like foam over the dorsal right foot and the ankle, where fibrosis restrictions where problematic. A short-stretch, layered compression bandage system was employed.3,5 Laura also continued using principles of skin care to keep her skin moisturized.

To address Laura’s complaint of right leg weakness and to reduce her discomfort while exercising or walking, she was instructed in a home program that included the application of elastic taping to enhance the strength of

FIGURE 1

Anatomical Right initial landmark

At week 4 of treatment

Left

Dorsal Foot

30.7 cm

26.7 cm

24.0 cm

Retro-Malleolar/heel

39.2 cm

35.2 cm

31.5 cm

Ankle

29.0 cm

26.0 cm

22.0 cm

6” proximal to the ankle

40.0 cm

36.8 cm

32.0 cm

10” proximal to the ankle

48.6 cm

42.8 cm

39.0 cm

Knee Crease

42.0 cm

38.7 cm

35.0 cm

9” proximal to the knee

52.0 cm

50.8 cm

49.0 cm

Wi n t e r 2 0 1 8 / 1 9

the gastrocnemius and quadriceps.

Although there is ongoing discussion regarding its role in lymphedema reduction, elastic taping is recognized for its therapeutic value in the treatment of musculoskeletal pain and weakness6-7. Incorporating elastic taping offered Laura a way to enhance muscle strength, support lymph drainage, and reduce pain simultaneously.

After four weeks, Laura is encouraged by the improvements of lymphedema reduction to her right leg. Her leg pain is gone and she is walking without a limp. Laura has reached her first goal of fitting into “skinnier jeans.”

Although she continues participating in treatment, she was recently fitted with a flat-knit compression stocking and a custom compression piece for the toes to use intermittently for an occasional “break” from the bandages, although she will still wrap every night.

She is focused on fitting into those shoes!

Discussion: Primary lymphedema is an underdiagnosed, debilitating condition that can directly or indirectly impact patient care. The uncertainty as to when to make the diagnosis of lymphedema, what treatment approaches are most effective, and the disconnect around recognizing this condition’s potential influences on progressive disability continues to propagate the idea that it is a “rare, mysterious condition” with few treatment options beyond uncomfortable compression garments. We must continue to support every effort to educate the medical community regarding the advances in research, technology, and developing treatment interventions that are now available to “de-mystify” lymphedema so that those who struggle with this condition are offered a chance for an improved quality of life. LP Reprinted with permission from National Lymphedema Network. Originally featured in NLN Lymphlink Summer 2017.

A full set of references can be found at www.lymphedemapathways.ca L y m p h e d e m a p a t h w a y s . c a 21

Patient Perspective

It’s complicated

Finding balance in your life doesn’t always come naturally A lymphedema diagnosis that came with an important lesson from the Universe

By Angela Dunphy

M

y journey with lymphedema is part of my journey with cancer. I believe there’s something to be learned from most any situation, and I needed to learn balance. At 45, I was working over 10 hours a day, and most weekends, in a demanding, intense environment. That suited me, as demanding and intense could also describe me. My idea of balance was a long walk on the weekend and then a great vacation after months of too much take home work, too many boardroom meals, and too many after hours meetings.

Then, after months of going to doctors and having boneand mind-numbing fatigue, came the cancer diagnosis.

Uterine cancer, statistically uncommon given my risk factors, but treatable. Just a glitch in my life, an enforced rest. Surgery, no big deal. Even better, it was early stage, so my healthcare team and I figured a quick return to normal.

The first hint from the Universe was that the incision took four months to close, and no one knew why. Four months of daily bandage (or stuffing, as I like to call it), changes. One of the many tests trying

to determine why the healing was so slow showed a slightly enlarged lymph node, which turned out to be cancerous. More tests, since Stage 1 uterine cancer shouldn’t have made it to a lymph node, particularly in the groin. It’s really disconcerting when your oncology team is puzzled. Odd, though they called it—and continue to call my health—complicated. The node could not be surgically removed, so radiation was needed. Then more radiation and chemotherapy, because if it “recurred” there, we had to be thorough.

Lesson learned? Nope – I worked through treatment, despite a good sick leave policy.

When the radiation oncologist said I would get lymphedema, I not only did not really understand, but I was distracted by the possibility that the radiation might also destroy my hip. I thought the lesson I was supposed to learn during this was acceptance—the key to serenity, of course.

Lymphedema in both legs appeared on a hot summer day when I escaped work for a lunchtime walk. I’m lucky, because one phone call got me to a Certified Lymphedema Therapist (CLT) in the cancer treatment center.

Compression, drainage, exercise, nutrition

Angela Dunphy is most importantly a proud Nana, but also a lymphedema patient, a cancer survivor, President of the Lymphedema Association of Newfoundland and Labrador, and committed to increasing lymphedema diagnosis, treatment and self-management in Newfoundland.

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– got it! Did I see the bigger lesson? Not yet!

Back to overworking in an environment where values had shifted, and I no longer fit in as well. My best shot at a boundary was “I won’t respond right away to email sent after 10 PM.” Yoga and meditation helped, but I brushed off having to use walls to keep me upright and parking in the visitor area to make it to the car at the end of the day.

By the next morning, I could move again, so how serious could it be?

Intensive lymphedema treatments followed flares, but I still did not heed my healthcare team’s advice to consider stopping work. How could an accountant be unable to work? Never mind the pain or being incapable of moving my legs after a day of work. Finally, after a regular visit to my CLT resulted in a very serious conversation about taking care of my “dynamic“ lymphedema before it got worse, I was off work. The sudden halt to my normal life was its own challenge, but I needed to deal with this condition. So, I did the research, along with my sister who had now developed arm lymphedema after her own cancer diagnosis, talked to my CLT, and experimented. And, I began to commit to the lesson of the necessity of balance. My life had been unbalanced for a long time, and now every day- sometimes every hour-needs mindful balance. Walking must be followed by leg elevation. Spending time with the joy of my life, my grandsons, requires rest and elevation. If I must shop in stores, an hour is my maximum, and then legs must be elevated. If I go somewhere where I will be seated for more than 90 minutes, legs must be elevated before and after, and I will need Wi n t e r 2 0 1 8 / 1 9

to use “Doc Oc”, my pet name for my CircAid Juxtafit compression garments, which I use at night when needed. Every day, I choose how to spend my non-elevated leg time. It’s finite, and on a bad day can be minute. For instance, if I want to cook a meal that has me standing cutting veggies, then even a quick grocery store run is out of the question that day. Unless my sous chef, also known as my husband, steps in!

Lymphedema isn’t the only dynamic thing about my health.

There’s always something happening health wise that seems to stem from cancer treatments. For me, balance is crucial. I am blessed with a husband who has willingly taken care of most of the household chores, a supportive family, and a wonderful healthcare team. I live in an area where lymphedema treatment is easily available, and I have health insurance to cover garments and treatments. With all of this, I still find it a challenge to manage lymphedema.

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We would love to hear from you...

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

As I journeyed through my lymphedema circumstances, I wondered how people without those resources managed.

Discussing this with my CLT, Jean Ann Ryan, led to me joining others to form the Lymphedema Association of Newfoundland and Labrador (LANL). We are an active organization, this year seeking to establish a working relationship with the government to ensure that training in lymphedema diagnosis and treatment is established in all healthcare regions of the province, and to become a registered charity. As President, I am heavily involved in these and other initiatives. LANL is very lucky to have the support of local businesses, with two garment providers giving discounts to our members, those providers and compressions suppliers funding our annual Public Forums, and a local gym holding Aqua Lymphatic Therapy sessions. And yes, sometimes I need to be reminded to seek balance with all the work necessary for the Association. So, Dear Universe, lesson mostly learned, but I would appreciate only gentle reminders from now on. LP If you would like to submit your own personal experiences, please contact us via email:

JOURNEYS canadalymph@live.ca Be sure to put “Personal Perspective” in your subject line.

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ays, d Pathw ave rea h I il e c On y fam y on to m it me s s a p I reciates He app te a d doctor. to him up keeping a and is m e d e h on lymp sted in ly intere genuine gazine. the ma s, William land Ro b e r t wfound e N , ’s n h o J St.

VOLUNTEERS NEEDED

Are you interested in volunteering within the lymphedema community on national initiatives?

Whether its helping us produce the Pathways magazine, standardized educational material, conference planning, website updates or fundraising initiatives – we could use your help.

Communications and Marketing including Social Media • Fundraising/Grant writing • General Office Work • Advertising/Sales • Project Work

10 Years

STRONG

SHARING

What a m a g a wo n d e r f u l zine.

We a to ha re lu ve in Ca this public cky nada ation – as so litt there le inf is o rm lymph edem ation abo ut a fo r and t p he m edica atients l world Dorot . hy Edmo Mallett, nton, Alber ta

2009–2019

Only some of the opportunities require you to be in Toronto.

You can work remotely from anywhere!

Contact the Canadian Lymphedema Framework to discuss the various volunteering opportunities that would match your skills, experience and interests.

canadalymph@live.ca or call 1-647-693-1083 L y m p h e d e m a p a t h w a y s . c a 23

Helpful Suggestions

Change your route Walking a route with changing elevations and changing your route (up hills, down hills) helps more to alleviate the tension and swelling in your legs than regular flat terrain walking.

Measure often As a self-management strategy; measure your arms at least once a month using a tape measure to monitor your limb volume. Measurements can be taken at the wrist, elbow and upper arm.

Manage your health In addition to using a good compression garment, maintaining a healthy weight, a proper diet, and staying

physically active will help in reducing and/ or maintaining the limb(s) volume.

Added compression If you are using above knee compression, you can add more compression to the leg using class one below knee compression to help reduce swelling during activities.

Photo: FITLEGS®

Easier bandaging Try wrapping your leg or arm earlier in the evening (i.e. when you get home from work or when watching television) rather than waiting to apply before bed.

LP

Sources: Mona Al Onazi and Paula Ospina at University of Alberta

Photo: myturningpoint.org

Compression alternatives Sport compression socks can be an alternative to regular compression for some patients. They are light and comfortable to wear; especially during the heat of the summer om l d. c r and while exercising. o Photo: runnersw

Photo: mylymph.com

Hints and Tips

Send us your hints and tips.

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

Improving the quality of care for patients with lymphedema.

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Research and Community

Did you know?

Lymphedema drug trial results

Photo: Mike Brown

were described in terms of key themes.

These identified themes included negaEiger Biopharmaceuticals, Inc. announced tive experiences of their lymphedema such their Phase 2 ULTRA study results in primary as “reinforcing abnormality” (e.g. damaging and secondary lymphedema of the lower limb self-esteem, frustrating restrictions and isolademonstrated no improvement of ubenimex tion); “negotiating uncertainties” (e.g. fear of over placebo in the primary endpoint of skin worsening of the lymphedema); “vulnerability thickness and secondary endpoints and caution” (e.g. avoiding pain and discomof limb volume and bioimpedfort, limiting life goals and aspirations); ance. No safety signals “disruptive transition” (e.g. resisting change, attributed to ubenimex losing progress and support); and resulting were identified. positive experiences of “developing resil Topline analysis suggests select, individual ience” (e.g. focusing on the positives, prioritizpatient responses which clinical investigators ing coping); and “taking responsibility” believe warrant further exploration. The (sticking to a routine, seeking independence). company plans no additional clinical work Children and but will support these additional investigator adolescents accept analyses and will update if future findings the need for ongoing suggest any potential pathway forward. lymphedema therapy; Source: eigerbio.com however, many are found to have low Search for Research Chair self-esteem and report restrictions in usual activities of daily The University of Alberta Faculty of Medicine life. Age-appropriate treatment plans and is initiating a worldwide search for possible strategies are needed to address emotional candidates for the newly announced Lymphatic Research Chair. The research emphasis of this issues, body image disturbance, and to Chair will encompass a full range of lymphatic promote increased physical activity and wellbeing through adolescence into adulthood. investigation includSource: Archives of Disease in Childhood 2018; ing both primary and 103:675-682. secondary lymphedema.

The endowed chair, Breast cancer related named the Dianne and lymphedema and Irving Kipnes Chair in Lymphatic Disorders, genetic predisposition is expected to attract suitable candidates Secondary lymphedema is a complication from a wide range of disciplines as well as following breast cancer therapy and constihigh calibre researchers in the lymphatic tutes the main form of lymphedema in the field to Edmonton, further expanding the western world. The purpose of this study was scientific and clinical impact of current to provide a clear overview of the genetic Albertan and Canadian research teams. predisposition and secondary lymphedema.

Source: lymphaticresearchab.com/news A systematic search was performed between February and June 2017 in MEDLINE and Children and Embase. Only original articles regarding the adolescents’ experiences possible relationship between genetic variation The major findings of a study describing the and the development of secondary lymphedeexperiences and perspectives of children and ma in humans were included in this review. adolescents with primary lymphedema CONCLUSIONS: In patients with secondary Wi n t e r 2 0 1 8 / 1 9

lymphedema following breast cancer therapy, genetic variations were found in 18 genes.

These compelling, although preliminary, findings may suggest a possible role for genetic predisposition in the development of lymphedema following breast cancer therapy. This notion may add to the classical, more mechanistic explanation of secondary lymphedema.

Source: Lymphat Res Biol. 2018 Oct 24

Compression reduces incidence of arm lymphedema In a previous randomized controlled trial it has been demonstrated that arm compression sleeves worn immediately after breast cancer surgery, including axillary lymph node removal, in addition to physical therapy are able to reduce the occurrence of early postoperative swelling and of arm lymphedema up to 1 year and to improve quality of life. The aim of the present investigation was to check the further development of the arm swelling in patients using compression sleeves or not, and to compare the quality of life in women treated due to breast cancer 2 years after surgery. RESULTS: Three from 20 patients in the compression group (CG) and 6 from 21 without compression showed arm lymphedema, defined by an increase of the arm volume exceeding 10% compared with the preoperative values. Significant improvement of several quality of life parameters were found in the CG. CONCLUSION: Light compression sleeves worn for 2 years are not only able to reduce the incidence of early postoperative edema and of lymphedema, but also lead to a significant improvement of important quality-of-life parameters like physical functioning, fatigue, pain, arm and breast symptoms, and future perspectives.

Source: Lymphat Res Bio. 2018 Oct 19

LP

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Education Education

Canadian and International Events May 17-19th, 2019 Sydney, Australia

The Australasian Lymphedema Association will host their 2019 ALA Symposium in Sydney, Australia.

The 3-day program will feature a whole day plenary session, workshops, social events and more. n www.lymphoedema.org.au

May 30 - June 1, 2019 Austin, Texas

The Lymphatic Forum 2019; Exploring the Lymphatic Continuum is hosted by Texas A&M University, and will feature world-renowned speakers. n www.navbo.org/events/lymphatic-2019

June 13-16, 2019 Chicago, USA

The 9th International Lymphoedema Framework Conference co-hosted by the American Lymphedema Framework Project (ALFP) will be held at the Hyatt Regency in downtown Chicago. The abstract submission deadline is January 7 and online registration is now open. n www.lympho.org

September 23-28 2019 Buenos Aires, Argentina

International Society of Lymphology XXVII World Congress 2019. Lymph in Motion – Beyond Lymphatics. n www.lymphology2019.com

November 1-2, 2019 Toronto, Canada

Canadian Lymphedema Framework is bringing their national conference back to Canada’s largest city. The program is 2 days in length for health professionals and 1.5 days for the patient summit.

The venue is the Marriott Toronto Airport Hotel. n www.canadalymph.ca

You Are Not Alone You have access to information, resources, contacts and support from people who know what you’re going through from their own personal experience. You have the following organizations on your side.

Alberta: Alberta Lymphedema Association

www.albertalymphedema.com

Atlantic Region: Atlantic Clinical Lymphedema Network

www.atlanticlymph.ca

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

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

www.lymphnl.com

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

Pathways – Canada’s National Lymphedema Magazine: www.canadalymph.ca Empowering patients and health professionals. This national magazine is published quarterly. Contact your provincial lymphedema association for subscription details.

The CLF distributes Pathways including customized inserts through its provincial partners.

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

Platinum Sponsorship

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

Silver Sponsorship

Lymphedema Association of Nova Scotia Lymphedema Association of Ontario

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

About the CLF The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.

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

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Freedom in Motion

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THERAPIES. HAND IN HAND. www.jobstcanada.ca 1-877-978-5526