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Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

WINTER 2017

Empowering patients and professionals

Pediatric lymphedema

Transepidermal water loss Understanding determinants of behaviour Reimbursement inequities

NOUVEAU... Une sélection d’articles traduits en français au fr.infolympho.ca/revue-pathways B846_CLF_Pathways_Winter2017.indd 1

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Editor’s Message

We’re all in this journey together

I

am delighted to introduce you to Katie Nedjelski and her son Ben, the young child on our front cover. Katie exemplifies a great attitude for families who are living with a child diagnosed with lymphedema. I applaud Katie’s approach and eagerness to share her tips with other parents in order to make their journey easier. The burden on parents and families of children with lymphedema can, no doubt, be very worrisome. Thankfully there are clinicians like Dr. Catherine McCuaig and Chantal LaPointe, who specialize in diagnosing and treating pediatric lymphedema. They’ve provided us with an overview of pediatric lymphedema and the treatment protocol for their clinic. We encourage other centres focused on treating children with lymphedema to share their experiences with us as well. Treating lymphedema can be challenging for health professionals. It is the therapist who must deal with patients who may be frustrated, angry, disillusioned and sad about their condition. Psychiatrist Jane Turner effectively addresses the need for health professionals to understand the determinates of behaviour in order to be more helpful to their patients along this journey. I was fortunate to hear Jane’s presentation earlier this year at a conference in Darwin, Australia and believed it was important to bring her message to Canada. A component of lymphedema treatment

that frustrates both patients and health professionals is reimbursement for treatment. It doesn’t seem fair that where you live and what type of lymphedema you have can determine the type of financial coverage available to you. The provincial lymphedema associations are working hard with their local health ministries to address this inequity. These same associations, offer educational conferences and symposiums. I encourage patients and health professionals to attend these events, as learning about new diagnostics, care, research and treatment for lymphedema can be empowering and inspiring. The Canadian Lymphedema Framework is hosting its national lymphedema conference next October 27-28, in collaboration with the Lymphedema Association of Quebec. Be sure to SAVE THE DATE! Professor Terence Ryan is an icon and a renowned dermatologist within the international lymphedema and wound community. He is still as busy as ever in his retirement years both in his travel and advisory roles. Yet he was very gracious to spend time working with us to get his article about skin barriers and lymphedema just right. We are grateful for his generosity in sharing his lifetime experiences and research with our readers. In our efforts to promote lymphedema related research in Canada, we’ve added a new column that will profile a different researcher each time. Professor Margie

The provincial lymphedema associations are working hard with their health ministries to address reimbursement inequities and need your help in lending a voice and a hand. McNeely kicks off this inaugural profile. Never have we had such response to an article as the Lipedema Overview in our Fall issue of Pathways. This tells us that a review of this topic was long overdue as it is a much neglected and misunderstood area of lymphatic related disorders. Your feedback encourages us to feature more about lipedema in future issues. With that, I encourage you to send us requests on topics and authors that you would like to see featured in Pathways. Remember—this is your magazine. Collaborate with us to make it even better! LP

Anna Kennedy

National Lymphedema Conference 2017 Omni Hotel and Conference Centre, Montreal, Quebec

October 27–28, 2017

The bilingual conference is co-hosted by the Canadian Lymphedema Framework and the Lymphedema Association of Quebec in collaboration with the McGill University Health Centre and Concordia University.

RESEARCH Wi n t e r 2 0 1 7

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EDUCATION

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PARTNERSHIPS

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Contents

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Pediatric lymphedema and physiotherapy

Resources for children, teens and their parents at a Quebec based hospital.

Winter 2017

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Volume 6 Issue1

Taking heart when your heart sinks Understanding determinants of behaviour

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board Pamela Hodgson, PT David Keast MD FCFP Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy

Communication challenges for health professionals.

................................................................... Transepidermal water loss Until recently, an unrecognized key to lymphedema

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Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada–$25. United States–$50. International–$65. Single copies and back issues–$7. Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of Melanie Dawn Photography, K.Nedjelski, C.Lapointe, NLN, M.McNeely, T. Ryan

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

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The barrier function and its role in lymphatic overload.

Reimbursement inequities Provincial discrepancies for lymphedema care

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The financial burden and barriers for patients.

......................... This is Ben A young boy and his family navigate the lymphedema world together Lessons learned by mom and dad.

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NLN Conference 2016 Shaping the future through commitment, evidence and new frontiers Dallas, Texas.

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.......................................................... RESEARCH PROFILE Impairment-based cancer rehabilitation

Physical therapy and exercise to prevent, minimize or treat specific side effects of cancer treatment.

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TO ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: PathwaysSubscriber Password: nodes

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Therapist Perspective

Pediatric lymphedema and physiotherapy Resources for children, teens and their parents at a Quebec based hospital By Chantal Lapointe and Catherine McCuaig Introduction For the past four years our multi-disciplinary clinic has provided care to children and adolescents with lymphedema at the Sainte Justine University Hospital in Montreal. Our team includes a dermatologist who makes the diagnosis supported by images supplied by a radiologist and a nuclear image technician, a vascular anomalies nurse, an occupational therapist and a physiotherapist specializing in lymphedema who provide care. Annually, more than 50 children and adolescents living with primary or secondary lymphedema are followed up with or receive care at the Lymphedema Clinic of Sainte Justine hospital, the only centre specialized in pediatric lymphedema in Quebec. To date, there is no cure for this condition. Treatment currently consists of alleviating symptoms associated with lymphedema. Medical understanding being still in its infancy, lymphedema treatments for children are based on the few available probative facts. As well, there is no clear reference framework

regarding physiotherapy treatments to offer children presenting with lymphedema. Thus children, adolescents and parents sometimes feel helpless and without resources. Different types of pediatric lymphedema Primary lymphedema results from a developmental anomaly of the lymphatic system, most often hypoplasia of the lymphatic vessels (Blein, Martin, Lorette, Vaillant, Baulieu, Maruani, 2010). It may be present at birth, may appear during childhood, adolescence or even later (Phillips et Gordon, 2014). The malformed lymphatic vessels cause an accumulation of protein-rich liquid in the interstitial spaces and this accumulated liquid causes swelling (Greene, A.K, Slavin, S. A., Brorson, H., 2015) most evident in the extremities and genital areas. The first description of congenital lymphedema was by Milroy in 1891 followed in 1898 by Meige who described

Dr. Catherine C. McCuaig is a pediatric dermatologist at the University Hospital Center Sainte-Justine, University of Montreal, Quebec. She is part of the Hemangioma Investigator Group and the International Society for the Study of Vascular Anomolies (ISSVA), and currently a board member of the Canadian Lymphedema Framework. Chantal Lapointe, BSc, PT, M.Réad, CTL(CS), ALT works at University Hospital Centre Sainte-Justine with pediatric clientele in different settings: neurology, orthopedics, trauma, burn unit, oncology, rheumatology and lymphedema. In 2016 she graduated from the University of Sherbrooke with a masters focused on pediatric lymphedema.

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lymphedema in adolescents. At that time scientific developments had made it possible to differentiate lymphedema from other types of systemic edema (International Lymphoedema Framework 2010). The majority of pediatric lymphedema patients are affected by an isolated sporadic condition with an unknown genetic mutation. In 11% of children with pediatric lymphedema it can be associated with a syndrome (Greene et al., 2015). With a congenital absence of lymphatics, lymphedema is present at birth. It can develop later in cases where the lymphatics are more hypoplastic (Greene et al., 2015). The two most common types of pediatric lymphedema are Milroy’s disease and Meige disease/lymphedema. Pediatric lymphedema presents with a genetic etiology in 36% of patients with a family history and in 8% of children with lymphedema de novo (Greene et al., 2015). The recent discovery of genetic mutations associated with primary lymphedema permit us to hope that curative treatments may be developed in the future. See Table 1 for the different types of pediatric lymphedema and associated syndromes. Characteristics of pediatric lymphedema Pediatric lymphedema is distinct from that of adults in the following characteristics: •it is usually primary rather than secondary in origin •it can affect more than one limb or region of the body •pitting edema is not always present •its management challenges are different Ly m p h e d e m a p a t h w a y s . c a 5

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from those of an adult because of a child’s natural growth, mental understanding and collaboration in treatment •the developmental changes experienced by a child with primary lymphedema must be assessed both physically and psychologically •few therapists are specialized in treating children; according to the Australian Lymphology Association (ALA) in 2010, only 16% of lymphedema therapists treated children (Phillips et al., 2014). Age of manifestation The classification which ought to be used today to facilitate communication and research is that based on the different stages of development (Schook et al., 2011; Greene et al., 2015). Even if the lymphatic malformation in a pediatric lymphedema

which many cases of lymphedema present. is present from birth, the manifestations Lymphedema in boys manifests more often appear after infancy. The beginning of pediatric lymphedema does not necessarily frequently during early childhood (68%), while in girls it develops more often during coincide adolescence (55%) (Schook et al., with the beginning of Motivate 2011). The characteristics of a poorly functioning engagement pediatric lymphedema of lymphatic system. in physical activity... an upper limb are different Its manifestation is Aqua lymphatic from those of a lower limb. influenced by the therapy, pool exercise accumulation/stagnaUsually, a lower limb or sport and lymphedema can appear tion of protein-rich before age 15 or up to age lymphatic liquid that motor-activity 25. For an upper limb lymphcauses inflammation, and games. edema, the age at manifestation by the presence of hormones; is much later (Vignes et al., 2013). thus often lymphedema appears later, at the time of puberty during hormonal changes. Many vascular malformations are Developing a reference framework exacerbated at puberty by hormonal changes, The overall objective of our project was to develop a reference framework based on and it is not surprising that adolescence is a time at existing best evidence in order to structure

TABLE 1

Primary lymphedema and associated syndromes Name

Responsible gene

Age of manifestation

Milroy (congenital VEGFR3 Present at birth primary lymphedema)

Region affected

Characteristics

Lower part of the leg, single or bilateral

Large prominent veins in the legs/hydrocele

Lymphedema- FOXC2 At puberty (but sometimes Limbs distichiasis at birth or later) Hennekam’s CCBE1 At birth or during infancy Generalized Syndrome lymphedema

Associated with a distichiasis (second row of upper eyelashes)

Turner’s Syndrome XO

Large thoracic cage, nipples far apart, drooping eyelids

During infancy in 76% of cases, Frequently affects during childhood and adolescence all four limbs in 19% of cases

Involves visceral organs, slows development, flattened face, ypertelorism, enlarged nasal bridge

Noonan’s Syndrome PTPN11/SOS1 Congenital, changeable Peripheral regions and regressive (hands/feet)

Delayed growth, facial dysmorphism, unruly hair, ulerythema ophryogenes cardiac, pulmonary, genital or bony malformation

Klippel-Trenaunay PIK3Ca During infancy, childhood Usually limited to one limb Syndrome or adolescence but may present in several limbs and/or the head and trunk

Birth marks or wine stains (malformation in the capillaries of the skin) hypertrophy of soft tissue or bone, venous malformations, lymphatic anomalies

Meige

Yellow nails

No associated Adolescence gene to date

Lower limbs, arms, face, larynx

Sources: Blein, et al. (2012, p. 748); Greene et al. (2015, p. 60); Damstra, Mortimer (2008, p. 278); Connell, Brice, Mansour, Mortimer (2013, p. 4). 6 Ly m p h e d e m a p a t h w a y s . c a

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TABLE 2

Age at which primary lymphedema appears Developmental classification Age of manifestation

Definition

Statistics

Infancy

Birth to 1 year

49.2% in infancy

Childhood Adolescence

1 – 9 years 10 – 21 years

9.5% during childhood 41.3% during adolescence

Adult

>21 years

19% in adulthood

Source: Greene et al. (2015, p. 61).

our physiotherapy interventions with children (pre-school group 0-4 years, 5-12 years group, and adolescents 13-18 years) presenting with lymphedema. Initially a review of the existing literature on the treatment of lymphedema in adults was undertaken from which it emerged that the majority of evidence dealt with lymphedema secondary to breast cancer (LSBC). Next a review of the literature on pediatric lymphedema was performed. Finally, to explore the feasibility of offering optimal care to those with pediatric lymphedema, questionnaires were prepared and distributed to experts, parents of a child living with lymphedema and to adolescents with lymphedema.The results of the literature survey on treatment of LSBC cancer suggest that decongestive lymphatic therapy (DLT) works in the management of LSBC. DLT includes: 1) manual lymphatic drainage, 2) compression, 3) skin care, 4) curative exercise. The key component is compression. The results of the literature survey on management of pediatric lymphedema suggest that there is no evidence that the means used to treat adults with lymphedema work with children. The analysis of the questionnaires distributed to the three participant groups (10 experts in pediatric lymphedema, 11 parents with a child with lymphedema between 0-12 years, and 9 adolescents aged 13-17 years) demonstrated that three modalities stood out as most frequently used: skin care, compression garments and exercises. Conclusion Until scientific evidence can recommend best practice guidelines for pediatric lymphedema management, its treatment is primarily Wi n t e r 2 0 1 7

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condition among children and adolescents. A multi-disciplinary team specialized in pediatric lymphedema should educate and inform parents and children/adolescents of scientific advances concerning possible treatments for pediatric lymphedema. Different modalities may be appropriate for different age groups. As well, it is essential to integrate the therapies into the daily life of the child/adolescent and to encourage her/him to participate in normal age-appropriate activities in order to foster optimal physical and psychological development. It is essential to motivate engagement in physical activity according to each individual’s preference by proposing many different types of activity such as aqua lymphatic therapy, pool exercise, an exercise program or sport and motor-activity games adapted to the motor development of children. The best possible treatment to offer children/adolescents with lymphedema is one that is accepted by the parents and the child, rather than some strict ideal treatment to which they will not adhere. LP

Key messages • Have a multidisciplinary team specialized in pediatrics to manage pediatric lymphedema. conservative and can include DLT—currently recognized as the standard treatment for LSBC. Compression should be encouraged for adolescents and for children who are walking. Garments seem to be the modality of compression most preferred by the pediatric population. Adjustable compression garments that employ Velcro fastenings may be a useful choice given the growth changes that children experience. Compression bandages are not very popular with the pediatric population but it is important to individualize each treatment. Skin care is a modality that is regularly used by all three groups surveyed (pre-school, school age and adolescent) and should continue to be encouraged as it helps in the prevention of fungal and bacterial infections including cellulitis and lessens the aggravation of the

• Educate parents, children/ adolescents and professionals. • Promote individualized treatment depending on the age of children/ teenagers. • Ensure that the treatments do not impede normal development of the child. • Encourage the use of certain modalities: skin care, compression and exercise. • Empower and raise the awareness of parents/adolescents. • Strive for a community of practice.

A full set of references can be found online at www.lymphedemapathways.ca. Ly m p h e d e m a p a t h w a y s . c a 7

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Clinical Perspectives

Taking heart when your heart sinks Understanding determinants of behaviour

Communication challenges for health professionals By Jane Turner

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ealthcare professionals treating patients with lymphedema typically have training in physical therapies or nursing. While these healthcare providers may be very skilled and knowledgeable about lymphedema, helping a patient and family manage this long-term chronic condition requires much more than simply understanding lymphedema and the various treatment techniques. Personcentered care is an essential component of care. This includes respecting the patient’s values and actively involving them in the decision making around their own care. The lymphedema therapist must understand what is important to that individual and help them to meet their own personal lymphedema management goals. Improving clinical outcomes and job satisfaction for the therapist, can require a sound understanding of factors that influence human behaviour, and patient-therapist interactions.

feelings that therapists have about their improvement in clinical status was seen as patients. Whilst this term is used in psychiatry, feared by some patients who would thereby in fact all therapists have feelings about their lose the professional support which had patients. If we “like” patients we may be more been integrated into their social network. patient, tolerant and generous. Conversely In addition there was acknowledgment if we do not “like” a patient we may of the emotional burden for patients with unconsciously offer lesser care, perhaps be lymphedema, in some instances associated late for appointments or fail to explore distress. with pessimism about outcome and lack of In the 1970’s Groves1 described motivation to persist with therapy2, various types of behaviours that these issues in turn impacting caused negative feelings in on treating therapists. Most critically, Groves doctors, going so far as to It is the behaviour refer to “hateful patients.” notes that the feelings of the health This seminal paper are not at issue—it is the professional in describes various patterns behaviour of the health response to of patient behaviour professional in response challenges which or attitudes (including to these challenges which is most critical. apparent dependence and is most critical. Reflection reluctance to “get better”) and awareness of these which potentially engender powerful feelings is essential to negative countertransference in doctors. ensure that the patient receives good care. Focus groups with health professionals However recognition of the feelings is just Emotional responses to patients in the United Kingdom and Canada the first step in being able to provide good Within most health systems there is scant revealed that the demands of lymphedema care. Developing an understanding of the recognition of the emotional impact of working treatment are changing and therapists are determinants of patient behaviour (such as demanding behaviour or entitlement) with patients with chronic illness, and there treating patients with increasingly complex is a necessary next step. The patient who are covert if not overt sanctions against health needs. There was recognition that is consistently critical or demanding may discussion of feelings health professionals for some patients the relationship with make us feel inadequate or resentful that have about their patients. Countertransference the treating therapist fulfilled needs for our skills and care are not valued, leading is a term used in psychiatry to refer to the caring and support, and paradoxically to rejection of the patient and an escalation of the cycle of demands and mutual frustration. Jane Turner PhD, is a consultation-liaison psychiatrist who has worked clinically Developing an understanding of the origins in oncology for 25 years. She has extensive experience in medical education and of these patient behaviours in turn provides communication skills training. She is currently Professor, Discipline of Psychiatry at clues about developing effective strategies the School of Medicine, University of Queensland, Australia. for responding. 8 Ly m p h e d e m a p a t h w a y s . c a

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Understanding the determinants of behaviour The range of responses to adversity is vast—some will “rise to the challenge,” while others may appear defeated before they have even tried. Still others appear demanding with little acknowledgement that their expectations may not be reasonable within the constraints of the healthcare system(s). Personality refers to the characteristic patterns of behaviour and modes of thinking that determine a person’s adjustment to the environment. Components include intelligence, beliefs and moral values as well as emotional reactivity and motivation. We are all a complex constellation of characteristics, and most of us have the ability to be adaptable and flexible in response to adversity. However for a proportion of the population their personality style is less flexible, and patterns of responding to adversity or a crisis can be unhelpful, leading to personal discomfort, tension in relationships and challenges in occupational functioning. How does personality develop? Babies appear to have very different temperaments from birth, indicating that there are certainly biological determinants of personality. However the notion that the environment then interacts with the individual to produce a particular personality style is a somewhat simplistic view. The field of epigenetics examines how early experiences influence when, and to what extent, different genes are activated. Emerging evidence suggests that persistent exposure to stress hormones can disrupt the architecture of the developing brain, leading A program of

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to overactivity of the amygdala, which is associated with patterns of hyper-responsivity to future stress, and increased potential for fear and anxiety. Additional postulated changes in response to severe and persistent stress leads to reduction in the ability to regulate mood and appropriately interpret and respond to situations of threat3. Early experiences lead to changes in brain structure and function.

Adversity thus has the potential to cause changes which alter the body’s response to stress and ability to self-regulate, these changes persisting into adulthood. The clear implication of this emerging data is that individuals behave in particular ways because of factors which have operated earlier in their life and which are largely invisible to us in the “here and now.” So, in responding to the person whose personality style is unhelpful in the current situation it is helpful to stand back and think “There are complex factors that have led to this pattern of behaviour. I don’t know what they are, and this response is not necessarily about me.” Making it less personal can be quite liberating.

Responding to a challenging personality style We are all subject to our human frailties. Responding professionally to a demanding or challenging patient can sometimes be trying for the healthcare provider. People presenting with narcissistic characteristics typically see themselves as more worthy than others, and demonstrate a sometimes breathtaking lack of awareness of how their demands may impact on others. Trying to appeal to their better nature is typically ineffective and this situation can lead to feelings of being used and manipulated. Most of us have our own sense of healthy narcissism and being devalued or patronised can rankle and potentially contaminate our care of other patients as we mentally fume about the injustices meted out to us. Reflecting on our feelings, recognising that this person’s personality characteristics are not likely to change, and seeing that we can contribute to an escalation of conflict are all important. Hence standing back and “rising above” the tacit invitation to argue can be very powerful. For example when Mrs. Brown complains loudly about being kept waiting, instead of explaining why this is the case, a simple “Oh, yes I am sorry. I’m sure you have other things you need to get done” takes away the opportunity for her to further criticize. The key issue is to resist the desire to retaliate—resist her invitation to play the “game”, as she will make sure that you never ever “win.” Responding to unfair reactions Just as we all have our unique constellation of personality characteristics, we all use a range of defence mechanisms—unconscious

Help us celebrate this year’s Award Winners ONE WISH AWARDS: Brad and Lindy Paquette. Amherstburg, ON and Terry Haubrich. Toronto, ON NATIONAL WINNERS: Julie Chan. Family Caregiver, Scarborough, ON and Lea Legge. Professional Caregiver, Gonor, MB VOLUNTEER OF THE YEAR: Laurela Conrad. Toronto, ON REGIONAL AWARD WINNERS: • Elizabeth Anthony. Family Caregiver, Victoria, BC • Jason Anderson. Professional Caregiver, Burnaby, BC • Sara Shearkhani. Family Caregiver, Toronto, ON • Darlene Kidd. Professional Caregiver, Sudbury, ON

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visit, but creates tension when they arrive. The relative may make critical comments when they visit, such as “You haven’t helped at all with this swelling. You’re obviously hopeless at your job.” The temptation is to defend your treatment, or even challenge the person about their claims. If the behaviour is recognised as projection, you can discern in fact that the relative is responding this way because they feel guilty, and have failed to offer support. So unconsciously they deflect this on to you, rather than reflecting on their personal deficiencies which would presumably cause them intense distress. Acknowledging painful feelings and being generous allows the person to reclaim some dignity and you to avoid increasing tension: “It’s really upsetting to see someone you care about be so ill.” A final thought Health professionals may occupy a very different world from those they treat. As healthcare professionals, it is important to keep in mind that we really don’t know the path the person has taken to be at this

Developing a broader understanding of the complex determinants of behaviour and social context will help us to develop a repertoire of coping strategies. point. We need to appreciate that the same determination and goals and values which have helped us to achieve professionally can make us vulnerable to feeling frustrated when clinical situations do not go as we hope or plan, or when people behave in ways which seem unreasonable—the “heart-sink” situation. Developing a broader understanding of the complex determinants of behaviour and social context will help us to develop a repertoire of coping strategies, so that we can indeed “take heart.” LP A full set of references can be found online at www.lymphedemapathways.ca.

THE VITALITY OF THE SEA

behaviours and reactions to help protect us from emotional pain. They can be thought of as similar to the many involuntary physical responses we have—for example if we put our hand under a running tap and find the water is too hot we withdraw our hand automatically. George Vaillant4 has made enormous contributions to our understanding of behaviour and defence mechanisms through his involvement in the Grant Study, a longitudinal study of psychological health. He developed a hierarchy of defence mechanisms and described those which are less mature and those more likely to be helpful in daily life. A key point is that challenging the person who is using immature defences will not automatically result in contrition and more mature behaviour—these are essentially involuntary, and so other strategies are necessary to respond to a person using immature defence mechanisms. A common and challenging defence mechanism is projection. An example is a person who has had little to do with an ill family member, who makes an unexpected

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Clinical Perspective

Transepidermal water loss Until recently, an unrecognized key to lymphedema

The barrier function and its role in lymphatic overload By Terence Ryan

A

nyone caring for the disabled will be aware of the increasing prevalence of survival into old age and the frequency of both obesity and diabetes. It is natural and common sense to blame lymphatic failure as the prime cause of lymphedema, but Hebra and Kaposis in the second half of the 19th century thought that venous overload might be a contributor13. By the 1900s, inflammation was recognised as a contributor and Castellani (1965) continued for 50 years to emphasise this. In the last decade more attention has been given to adipose tissue; it has been long known that lymphedema encourages fat cells in the thickened dermis5 and that removing fat by liposuction is therapeutic3. Mice bred to develop lymphedema are obese1. In recent years it is has been realised that the mediators of inflammation found in the dermis are manufactured and released from the epidermis when it is in repair mode and are not the products only of dermal macrophages and white cells15. For more than 100 years, entry points for bacteria have been a discussion point for the management of lymphedema. For a much shorter period, almost every discussion about the skin and its diseases has focused on its function as a barrier and the malfunction of deep crevasses and cracks. The value of restoring the barrier when it is failing has

FIGURE 1

Diagram illustrating dominance of the epidermis over blood capillary bed and lymphatics. been emphasized. In the management of elephantiasis due to filariasis it was realised that treating entry points such as between the toes or avoiding pin pricks and other inoculations was advisable. What must now be emphasized is that the slightest injury to the epithelium affecting its barrier function makes it change its behaviour to a repair mode. In health and at rest the epidermis is an organ almost without mitotic figures, mostly anaerobic and undemanding of oxygen and it is not manufacturing cytokines and growth factors. After injury its basal cells begin to divide and multiply, its upper layers

Terence. J. Ryan, DM, FRCP is Emeritus Professor of Dermatology at Oxford University in London, England and is a mentor for the Lymphoedema Programme at the Institute of Applied Dermatology in Kerala, India. He has held senior posts and founding roles in numerous international dermatology and wound healing organizations from which he has received many Lifetime Achievement Awards.

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then also demand oxygen and the epidermis releases numerous stimulants to its blood vessels in the upper dermis. This results in neutrophils arriving on the scene. They demand 50 times more oxygen and secrete destructive agents such as elastases. The practice of prescribing long term antibiotics to treat bacteria entering through the epidermis introduced a topic for discussion such that treating entry points in this way did not always work. Studies in Brazil7, 8 and India16, 18 however pointed out that regular washing and the use of emollients compared to daily penicillin, proved that prescribing such antibiotics was not so often necessary when and if the skin was cared for. One of the commonest of skin diseases, atopic eczema, has led to intensive study of barrier function and treatment when the epidermis fails. There has also been extensive Wi n t e r 2 0 1 7

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study of elderly skin which also has less the other hand, we are less aware of loss of effective barrier function, and dries out and barrier function, though it may contribute to cracks. Such studies have identified control pruritus in the elderly, except by touch when of transepidermal water we may perceive dryness or FIGURE 2 loss (TEWL) as a prime moisturization. function of the skin10. It There have been many has been proven to play key investigators of TEWL. Paul a role in moisturization, Matts is one of these who has pliability and prevention of also taken up elephantiasis as cracks in the surface and a major interest and has led exfoliation. Too great water studies of this barrier failure in loss results in desiccation lymphedema in its presentation and exfoliation, such that as podoconiosis in Ethiopia. the barrier becomes no This is elephantiasis resulting longer effective. from not wearing shoes and The skin is designed working in an irritant soil to perform four functions: (Fig 2.). It was at first found Epidermal changes in to act as a barrier, a that simply wearing shoes lymphedema showing deep thermoregulator, a sensory cracks in the surface which prevented the problem. Paul, are entry points for soil organ and because of who is a senior research irritants and bacteria. the look-good-feel-good scientist at Proctor and factor and its effect on self-esteem and body Gamble in Egham, UK, arranged for a senior image it is also a communicator. We see nurse, Jill Brooks, to make a PhD study of people mostly before we smell or hear them. trans epidermal water loss in this condition as This is an especially human attribute. On reported by Ryan 2016.

Jill Brooks (2016) found that in podoconiosis the TEWL was severely compromised. What was gratifying was that an emollient—3% glycerine - immediately reversed this. Glycerine/glycerol has many ideal properties (Fluhr et. al. 2010); it holds moisture in the skin and is not expensive. There is a new concept in the offing illustrated by a poster9 at a meeting of the British Microcirculation Society. It addresses the family of cytokines/growth factors and receptors known as vascular endothelial growth factors VEGF; one of the inflammatory cytokines and growth factors released from the epidermis when traumatised. It postulates that while VEGFA is all about stimulus of blood vascular endothelium and was once named vascular permeability factor, the VEGFC system is all about a response to such permeability. Findings in the kidney led to a discussion about the VEGFC system which opposes VEGFAs excesses by clearance by the lymphatics and by tension dispersion by adipose tissue and could be the epidermal means of protection from permeability

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too, can have a major role in lymphatic overload because of cytokine stimulation We must now realise that barrier function of the of excess blood vascular permeability. The epidermis is essentially all about control of management of lymphedema of course transepidermal water loss (the Matts Hypothesis) requires interventions to promote flow such as massage, breathing, and body movement. a much more subtle and refined process But overload must also be Matts’ hypoth esis: ho lead to w attended to so that the better o si utcomes mple strategie s can overload. We could ask: is there a link here stimulus which would more venous system benefits between such control and the reason VEGFC resemble psoriasis, with numerous from elevation and enhances both growth of lymphatics and nuclei present in the upper layers ankle movements, or adiposity? Some bright investigator might due to fast turnover and in attention to compression A explore this further. psoriasis exfoliation is more of a in the axilla after protective Domaszewska-Szostek et. al. (2016) have feature. The hyperkeratosis of fat pads are removed. proposed that the cytokines in stagnant lymphedema is tightly bound Management of obesity tissue fluid/lymph fluid are responsible and little inclined to exfoliate. by dietary means, exercise for hyperkeratosis in human lower limb and sometimes liposuction lymphedema. Of course the epidermis will Conclusion may be added. The low cost be affected by the pool of cytokines and For a long time when managing lymphedema intervention of caring for the growth factors but it is important to realize we have thought of barrier function in terms epidermis by washing and applying emollients that the epidermis is the conductor of of entry points through cracks. We must now now becomes a self-help intervention of great affairs and a factory of the mediators when realize that barrier function of the epidermis is simplicity and effectiveness. LP stimulated by injury. The hyperkeratosis of essentially all about control of transepidermal lymphedema contains few if any nuclei, A full set of references can be found online water loss (the Matts Hypothesis) a much unlike the epidermal changes of epithelial at www.lymphedemapathways.ca. more subtle and refined process which, Practic e develo

pment

Terence Ryan

Key wor ds

Lymphat ic moisturis filariasis, lymp hoedema ation, oede , stratum corneum ma, podoconi osis, skin, barrier func tion

Abstract

This artic filariasis le looks at the caus and pod years. It oconios es of oedema high is – , lym

lights and Terence pho that lym Ryan is phoedem Matts’ hypothe how the treatme edema and con Emeritus Green (SCBF) Professor College, . The auth a can be caus sis (reported nt of leg swellingditions such of Derm Oxford; Control as ed for the as wash atolo to Advisor first time has changed lymphatic ing and or also refers by a breakdo Lymphat Global Alliance wn on Mor gy, in resp to emollien herein), over ic Filariasis, onse to bidit for the ts. The simple well-esta of the stratum which sugg the wor Eliminatio y wearing article Oxford, ests shows how blished strat corneum’s barr UK n of shoes, soil k with people Declaration egies to people ier func in Ethi Matt irritants who are of intere and bact opia who had s’ hypothesis, protect the SCB tion st: None and at risk urge erial foot . which podoco of deve F, such s that

niosis caus was form loping atten washing oedema infections, can ulated and emo tion be paid . The be used ed primarily preventi to by not across ng or redullients to ensu skin failure and article explores the wor re goo the con cing the ld for damagin d moisturisati cludes that the importance of the skin on g effects simple ll the of oedema of the limbs organs can be employment . old age beg highly effective of – incl in to fail uding in ove in body andSkin failure the skin rlying affe sim cts . epid ple ther integrit tissue ermis apies to the whole y or dee is advanta of the skin literatur not fully per adip may have restore the ges – one e on explain ose in the com lym ed in stimulat profoun inciden of which is the es d mai ponents have phoedema. the ce and leg swe fibroblas hyperplasia All ntenance essentia lling severity reduction ts to gen and enc l roles these of the thermor of chro Of all . erate coll in ourages nic egulatio skin’s barr agen. such as the known use in ier func the The ven n, sens com caus mal tion ory func ous sys es of municat nutrition , Rya heart, central tion tem ion. n (200 live and failu oedema, role that has r and kidn and sign in non-ver The skin also and authors 9) has disc re of eys, ussed how belie for the been given insu it is skin failuthe predispo alling, and bal commun has a thro mbosis ved that veno 19th century ication long failure examinin est time (Ry fficient emp re of life, ses the own us of the of this to lym hasi leg vein failure, even orga er phat an, 199 up the g the com s, cont 5). Wh s by othe stigmatisation to lower qua n observer ic failure. pon ributed rs. Inde en s found and ostr lity path distingu skin, the epid ents that In the much overed, 20th cent ology mak acism ishable ury lap betw subcuta from the ermis is clea e resolve early stages lympho of a failing neous een the complet of oed rly edema. veno dermis not all adip at ema ely Som also nigh and ose whe , it the com e in the us system and believed late 20th as the ponents tissue. How the does t. In the late n the person will imb coagulati vasculat alances r stages, not reso ever, sleeps century on to ure, lym of the dermis, tissue and lve oed fibro be resp 1980). with elev ema that fibrinoly tic resp (col such phatics onsi Tod onse ation macroph lagen and , connec nodules and grav ay, one mus ble (Burnard sis elas t note that compos in the leg and causes a et al, itational simply ages and den tin), mast tive will the often larg ed of who immobil accumul form cells, dritic identifie e bed lower leg vein ity ation rls cell and mic angioge , usually d s contribu of blood leakage with accoof collagen roscopic without spec s, can be nesis in tes to of kera inspecti It has every case and lymphat ial stain mpanyin and tinis ic overload capillary s to reco taken a long on. disturba g for affec of oedema Lympho ation. in almo beca gnise nces time for ted edema compon the pitting) dependen patients to use of the tend st people (bra ents. The importance sit with ency t posi a failu has tradition wny and their ir inte of thes Mastecto tion for long non raction e fluid re of the lym ally been my can periods legs in a blamed - of the 46 with the phatics s lade of time affect upp on and prot n with met to remove supportin er limb, due the venous syste . tissue abolic ein), the g adipose to rem m now oval accumul waste (lip id failu thought to be tissue in the axill of the ation of a a re majo whic which in (1994) this part of r factor of lym h is phatic the and Bain s et al body. Bates et (2015) have foun al Journal d of Lymphoe dema,

2016, Vol

11, No

1

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Advocacy

Reimbursement inequities

Provincial discrepancies for lymphedema care The financial burden and barriers for patients‌its just not fair By Anna Kennedy and Nicole Boulet Lymphedema is a chronic, progressive condition characterized by the accumulation of lymph fluid (swelling) due to a malfunction in the lymphatic system. It is now estimated that more than 700,0001 Canadians are living with lymphedema. For people who develop other chronic conditions such as diabetes or coronary heart disease, there are education and rehabilitation programs in place to help them return to healthy, productive lives. Unfortunately similar programs are not readily available for all Canadians living with lymphedema. The reality is that where you live and how you developed lymphedema dictates the extent to which the lymphedema treatment you receive is covered under universal health care or must be paid out of pocket.

therapy regimen comprising of skin care, bandaging, exercise, elevation, and manual lymphatic drainage (MLD)2. Once the swelling has been brought under control, long-term management of lymphedema involves exercise and daily wearing of compression garments to control symptoms and enhance the function of lymphatic vessels3. Compression is the single most important component in treating patients with lymphedema. Chronic lymphedema requires continuous compression3 as the maintenance of the lymph fluid reduction is directly related to adherence to night and daytime compression. Supplies required to support compression for lymphedema include: standard fit and customized gradient compression garments, multi-layer compression bandaging systems, compression wraps and other compression supplies and devices.2

Treatment Treatment for lymphedema is known as Combined Decongestive Therapy (CDT) or Decongestive Lymphatic Therapy (DLT) and consists of various kinds of compression, skin care, exercise and special massage techniques to reduce swelling and maintain the size of the afflicted body part. The initial phase of treatment demands an intensive

Compression costs The cost of compression varies greatly depending on the severity of the lymphedema, the body part involved (arm vs. leg), the type of garment prescribed, and whether custom or standard fit is required. Breast cancer patients often require standard fit or a lower grade compression garment, whereas patients with lower leg lymphedema typically require stronger

Anna Kennedy is the Editor of Pathways, Executive Director and founding member of the Canadian Lymphedema Framework. She was also appointed to the International Lymphoedema Framework board of directors since 2011. Nicole Boulet works part-time as the Pathways Editorial Intern for the Canadian Lymphedema Framework. She is currently in the Masters Communications Studies program at Wilfrid Laurier University in Waterloo, Ontario.

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compression, flat-knit and custom ordered garments. A person living with lymphedema can spend as much as $4000 per year on compression garments and bandaging alone. Adherence to treatment As there is currently no cure for lymphedema, adherence to a self-management routine is essential for patients to maintain reduction of their symptoms in the long term3. Increasingly, both hospital based and private clinics follow a chronic care self-management model where health care professionals act as coaches to patients (a “hands-off� approach) and encourage individuals to use compression on a daily basis and to exercise regularly. Barriers to treatment Adherence to treatment requires significant commitments of time, energy and financial resources from the patient. Research has found suboptimal levels of adherence to self-management among women with breast cancer related lymphedema. Therapists in one study agreed that adherence was negatively impacted by several potential barriers, including access to treatment and financial cost3. Several studies have also described distress related to financial burdens and insufficient health coverage as contributing factors to the psychosocial aspect of living with lymphedema6. Canadians with lymphedema indicated that cost is the most significant barrier to accessing treatments that are needed to cope with their condition9. The financial impact of the burden of adhering to lymphedema treatment is significant to patients and to society as a whole. When patients avoid treatment in order to save money, higher rates of hospitalization due to serious complications such as cellulitis can occur, resulting in significant costs to the provincial health care system7. Wi n t e r 2 0 1 7

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Why the disparity in funding? The Canadian health care system is good at delivering acute care and essential services to its citizens, e.g., hospitalization and surgeries due to a life-threatening illness or event, such as cancer. It is the components of health care deemed to fall outside of essential services that creates the inequity. Importantly, the position of lymphedema management within the health system is not clear8. Canada’s federal health care act dictates what funding the provinces will receive for health care. The provincial ministries decide where to allocate these funds, usually to local regional health networks. This

,,

,,

Inequitable access to treatment The Canadian Lymphedema Framework, in collaboration with provincial lymphedema associations published a 2016 Reimbursement Report outlining the varied coverage by provincial health care programs for lymphedema treatment. The report highlights the inequity in reimbursement showing that while a few provincial health care programs provide some reimbursement, other provinces provide none at all. In many provinces, the cost of care is only covered if patients are fortunate enough to access the few specific treatment centres within a hospital setting.

The Canadian Lymphedema Framework’s goal is to address issues of inequality of provision. We have a responsibility to care for those with lymphedema in ALL settings and for lymphedema of any etiology. –Dr. Anna Towers, Lymphedema Program Clinical Director, McGill University Health Centre (MUHC), Quebec.

allocation system results in huge disparities for Canadians living with lymphedema. Unfortunately where you live is not the only determinant of the level of reimbursement for lymphedema. Some provinces dictate how much reimbursement you are eligible for, depending on whether you have primary lymphedema, secondary lymphedema, breast cancer-related or non-breast cancer-related lymphedema. Imagine if the extent to which a patient with diabetes or parkinson’s disease received care was determined by how they acquired the disease or the type. Conclusion Of all the components of CDT, the effectiveness of compression has the most supporting evidence and as such is the most commonly prescribed treatment. Despite this, many people with lymphedema in Canada are not eligible for funding to cover the expensive compression devices that are compulsory to manage their condition. Those who are particularly

disadvantaged are people without access to private insurance through an employment plan and who cannot afford extended health insurance. Get involved The health care programs in all Canadian provinces and territories should provide lymphedema patients with access to consistent, affordable treatment. The provincial lymphedema associations are actively engaging their provincial governments to make this happen. We encourage patients, therapists and clinicians to join their local association and lend their voice and talents to this important advocacy work. LP A full set of references can be found online at www.lymphedemapathways.ca. Editor’s Note: A full copy of the CLF 2016 Lymphedema Reimbursement report can be found at www.canadalymph.ca.

$

$

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per year plus one set of multi-layer bandaging (both at 75% reimbursement) 5) British Columbia: 2 compression sleeves/gauntlets per year ($150 max-standard fit or $300 max -custom fit) but only for breast cancer related lymphedema 6) First Nations and Inuit Health: 4 compression garments per year plus bandaging supplies 7) Manitoba, Northwest Territories, New Brunswick, Newfoundland/Labrador, Nova Scotia, Prince Edward Island: Limited coverage only for low-income patients receiving social services.

$$

$

$

1) Saskatchewan: 4 compression garments provided annually (100% reimbursement) plus 1 nighttime garment (every 2 years), bandaging systems and accessories, partial funding for pneumatic pumps (primary lymphedema patients only) 2) Ontario: 6 compression garments per year (75% reimbursement) plus nighttime garments, pneumatic pumps (primary lymphedema patients only) 3) Alberta: 3 standard fit or 2 custom fit compression garments per year (75% reimbursement of benchmark price) 4) Quebec: 1 daytime or nighttime compression garment

$

$

REGIONAL COMPARISON - REIMBURSEMENT OF COMPRESSION SUPPLIES Some provinces provide partial funding for compression supplies under Assistive Devices Programs while other provinces have no particular programs in place.

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Patient Perspective

This is Ben

A young boy and his family navigate the lymphedema world together By Katie Nedjelski

Ben is five years old, loves playing outside, skating, swimming, riding a bike, building Lego, going to school and making everyone he meets laugh. Ben also has primary lymphedema in his right arm.

A

Photos: Melanie Dawne Photography

fter an uneventful pregnancy and birth, Ben arrived and we noticed his arm was swollen. This marked the beginning of our life with lymphedema—although we did not hear this new word for many months. As new parents we were consumed with finding answers as well as managing life with a newborn. We were followed by a pediatrician and began regular ultrasounds, X-rays, blood tests to rule out any other syndromes associated with larger limbs. We visited many clinics within the Alberta Children’s Hospital, including Genetics, Oncology and the Vascular/ Birthmark team. Nobody had a clear diagnosis or treatment path for us and we headed down many wrong turns and dead ends. We met privately with a therapist who was the first to confirm that Ben indeed had lymphedema. She trained us in manual lymph drainage, made Ben his first sleeve out of an adult sized garment and taught us how to wrap his arm. His development

and fine motor skills were always foremost on everyone’s mind, but we saw no signs that would prevent us from treating him as aggressively as he would let us. At the age of one he had his first custom garments made and we were in a regular routine of manual lymphatic drainage. Now at almost six, Ben is able to talk about his lymphedema when his friends ask why he has a bigger arm (they always empathize with their own creative story), he’s able to tell the camp instructors that he has lymphedema and it’s not a broken arm or a bug bite that sends them racing across the park to call his mom. He’s able to tell the garment fitter that he doesn’t like how it feels on his thumb or his therapist that it feels better or worse or no different at all. We end many evenings together talking about lymphedema, what it is, why he has it and why it makes him unique. Lymphedema will always be a part of our life. Here are some of the lessons we have learned in our short journey through the world of lymphedema with a child.

Be your child’s advocate. Read everything: textbooks, blogs, studies, posts, articles. We quickly realized that we know more about the lymphatic system than many doctors or specialists we saw. There is no defined course of treatment, so we sought our own care path which included physical therapists, massage therapists, garment fitters, naturopaths, osteopaths and chiropractic care. We question everything and make

Katie and Ben Nedjelski live in Calgary with dad Sheldon and little sister Finley. Katie is a lymphedema advocate, a school volunteer, small business owner and muffin maker. Ben is a monkey bar master, known for his T-ball home runs and has aspirations to be an astronaut or firefighter.

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sure each decision is the right one for Ben. Lymphedema affects people differently in general but with a child, no two cases are the same. What works for someone won’t work for another so seeking out and trying different things is OK and I strongly suggest it. Become a part of the lymph community. We have met many families on the same journey both locally, across Canada and even overseas who we have connected with through social media and often rely upon for advice. Parenting a child with a rarely diagnosed disorder is lonely and finding others who share the same struggles is an important part of this community. We jumped into the advocacy role and have met with politicians, health care executives, lymphedema associations, Alberta Health Services, media and anyone who will hear our story and will help advance lymphedema care in our province and around the world. Awareness is a huge priority for our family and we hope that more children are properly diagnosed and given appropriate treatment options through our story.

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on. Sessions with our therapist were done in the high chair while he played and ate. Even today we are proud that he will sit for an hour session doing a craft or playing with Lego. Dual purpose of compression garments. Daytime garments are for compression and protection for little boys who love the outdoors. Sunburns, wipe outs, scratches and falls, all pose a threat of a skin infection. This risk is minimized by having his garments on.

Think outside the box. When self-managing Ben’s lymphedema as a baby and toddler, we found unique ways to keep him happy and get his treatments in. MLD was done nightly in the bath and wrapping became a part of our routine. His skin was very sensitive so we experimented with different stockings under his wrap and his dad was fast at getting his short stretch bandages

Take one day at a time. The stress of a chronic condition and a rare disorder was daunting to us as new parents. As the first years passed our anxiety relaxed and we now feel that all we can do is try our best. We are grateful for supportive friends and family and are happy to provide that support to other lymph families! LP If you have a child with lymphedema, please contact us at knedjelski@shaw.ca or find me on Facebook or Twitter. We would love to hear from you.

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Conference Review

National Lymphedema Network (USA) Conference 2016 Shaping the future By Sandra MacDonald and Felicia Ingram

Shaping the Future Through Commitment, Evidence, and New Frontiers

August 31 – September 4, 2016 Omni Dallas Hotel, Dallas, TX

T

his year’s National Lymphedema Network (NLN) conference in Dallas, Texas was informative, thought provoking, entertaining and a fabulous networking opportunity.

The plenary sessions followed with Dr. Michael Paukshto, PhD presenting his research using a ‘bio-bridge’, or nanofibrillar collagen scaffolds in surgery to bridge an area of disrupted lymphatics, laying a foundation DAY The keynote address was for restoration of lymphatic vessels. There are positive results to date. given by Dr. Stanley Rockson, of Stanford Elise Radina, PhD of Miami University, University, and was entitled “Lymphedema: Ohio, spoke of the experiences of parents the no longer forgotten disease of the no raising a child with primary lymphedema. longer forgotten circulation”. He summarized The child experiences recent lymphedema research anger, sadness, fear and from the recent development frustration. The parents’ of ICG imaging techniques that frustrations include show the effects of lymphatic financial concerns, changes, to the identification insurance problems, of genes that contribute to finding a therapist and the onset of lymphedema. He the need for support: spoke of surgical advances in medical, social and online. lymph node transplantation In discussing fear that are promising but not yet 2016 Best New Investigator, Paula McDonahue (left). avoidance regarding breast as good as we would like. He cancer related lymphedema (BCRL) Maria introduced the idea of the use of surgical materials as bio-bridges and the Asdourian BSc of Massachusetts General potential for these to help grafting as well suggested patient education in risk reduction as assist in rapidly growing new lymphatic strategies should start pre-operatively. Merve Denizli, MD talked about breast vessels. He reminded us that lymphedema cancer being the most common cancer in is a disease of the subcutaneous tissues and that by the time you can detect lymphedema, Turkish women and that the results of a quality of life questionnaire given to women by any measureable means, that there will with upper limb lymphedema showed that already be changes happening in the tissues.

1

Sandra MacDonald RMT, CDT has been in private practice, both in BC and since 1994 in Halifax, NS. She has been involved with the Canadian Breast Cancer Foundation and is an Encore instructor. She has done many educational sessions with patients and therapists. Felicia Ingram BSc PT, CDT-LANA has served the physical therapy profession as a clinician, educator, and advocate. Both Sandra and Felicia are certified instructors of the Dr. Vodder School-International.

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physical disability is their greatest concern. Regarding measurements and metrics the presenters looked into the challenges of consistency of measures towards improved assessment, differential diagnosis and providing better information for decisionmaking in treating lymphedema. Dr. Robert Dinniwell, in a study at the University Health Network in Toronto, looked at using ultrasound to assess the lymphatics and concluded that differences between lymphedema and normal tissue could be identified. In Houston Marigold Travis, PT identified the need to standardize patient positioning when using a Perometer to avoid over or under diagnosis. Jane Wigg, MSc introduced a Tissue Dialectic Constant (TDC) that measures intra and extracellular fluid that might be useful for differential diagnosis between lipedema and lymphedema. Dr. Sheldon Feldman of Columbia University presented a retrospective study where researchers looked at established risk factors for BCRL and found a relationship between BCRL and chemotherapy, particularly with the use of taxanes. These resulted in an increased incidence of lymphedema, except when used pre-operatively. Looking at this further and applying in appropriate cases may allow for “down staging of breast cancer and reduce the need for nodal dissection” he stated “and reduce the incidence of BCRL”. DAY

2 Instructional sessions covered

a number of themes. In the session ‘Unravelling the Knotty Problems: Assessing and Treating the Medically Complex Patient’ Dr. Sandra Rosenberg, and DeCourcy Squire, PT, stated that hearing “oh, it’s just swelling” doesn’t help the patient. They reminded us of the multiple causes Wi n t e r 2 0 1 7

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of swelling and brought up some less often like many other chronic diseases that have no considered factors such as the endocrine cure, in that it requires management, rather system and nutritional factors which can than diet. be quite a concern with wounds that need In “Food for Thought: Nutritional nutrients to heal. We were reminded of the Considerations for Lymphedema”, Chuck Ehrlich, MS, MBA, and Emily need to constantly reassess, especially if Iker, MD provided an overview of the things are not changing. Is it lymphedema or role nutrition plays in is it something else? lymphedema management. The afternoon featured Topics such as gut dysbiosis an entertaining presentation (a microbial imbalance by Dr. Tobias Bertsch from associated with disease) the Foldi Clinic, Germany. were discussed. Some He challenged us to change healthy food choices were our attitudes towards obesity shared with the attendees as management and took us well as a list of foods that are through the myths and recommended to be avoided. science. He discussed the 2016 Best Career Investigator, close relationship between Dr. Jay Granzow (right) and DAY Showcased the the lymphatics and fat Dr. Joseph Feldman, spectrum of lymphedema cells and explained that Conference Program Director. and looked at imaging with fat tissue is an enemy of congenital lymphedemas. Jana Rothbauer, our lymphatics. He explained how lipedema BS shared there is little understanding of the and obesity are different diseases that often lymphatic and vascular changes that arise occur together, but that not every big leg is lipedema. He challenged us to look at obesity with Turner syndrome in which one third are

3

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Unable to attend a conference, but wish you could? Did you know that many researchers have their own websites? Google some of the names mentioned in this article to check out their work.

born with swelling. Karen Beltrain, HSDG discussed how to differentiate between lipedema and Dercum’s disease (a syndrome of painful fatty nodules and hypermobility). Erin Fazzari’s MPT, CLT, a wound care specialist stated that, in wounds the dermal backflow pattern on Near Infrared Imaging could also be seen. An interesting tip shared was that she has good reduction in cellulitis recurrence by using a 3:1, water: vinegar wash with patients. She also emphasized the need for a team approach to be successful in treating venous and lymphatic conditions.

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In the “Moving it Along” session Melissa Aldrich PhD presented a Near Infrared Imaging study using a clear compression pump where they were able to see recruitment of lymphatics. The topic self-bandaging was shared by Arun Rekha Gogia MA who runs a filarial clinic in India and who has found that patients who have been shown self-bandaging gain confidence and improved psychosocial measures. They also become a resource for new patients and

bandaging sessions become group therapy for those at the clinic. Paula Donahue, PT, demonstrated that with the use of functional MRI we can evaluate slight changes to the tissue environment. The study at Vanderbilt University performed MRI before and after MLD and saw reduction of interstitial protein concentration. The luncheon keynote address was by Amy Santiago, Mrs. Florida International, and Global Lymphedema Ambassador. Amy,

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who has had primary lymphedema since her twenties, shared how she struggled with her heavy leg and body image and then took on the world becoming successful in retail management and gaining the title of Mrs. Florida. The afternoon sessions followed with “Surgery for Amy Santiago, Mrs. Lymphedema.” Florida International. Dr. Alex Munnoch focused on liposuction and its benefits in quality of life measures and the need for specific criteria to be met to be eligible. Compression is mandatory for life afterwards, but his patients experience good volume reductions. Dr. Jay Granzow promotes a SAPL (suction assisted protein lipectomy) procedure, to reduce volume and notes a decrease in cellulitis recurrence for his patients. Lymphovenous anastomoses and lymph node transplants were also discussed. The “Hot Topic” session covered new technologies and the ideas of wearable technologies and patient monitoring of health data. On the latter topic, questions arise of who gets access? Provider? Patient? Insurance? Potential benefits may include improved medical records, and improved medical delivery. Better analytics may lead to better and earlier diagnosis, intervention and improved information exchange. The day ended with a presentation by David Zaweija, PhD from Texas, about the lymphatic system, inflammatory disease and immunity. He acknowledged that the lymphatic vascular system is critical for the immune system as it transports immune cells around the body and has a role in inflammation and in the many disease processes that are affected by inflammation. The conference also included informative poster presentations. It was nice to see so many people working to advance lymphedema advocacy and treatment. LP Thanks to the Dr. Vodder School-International for granting permission to print their conference review, which will be published in Vodder News www.facebook.com/ VodderSchools. Wi n t e r 2 0 1 7

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Researcher Profile

Impairment-based

cancer rehabilitation

Physical therapy and exercise to prevent, minimize or treat specific side effects of cancer treatment By Margie McNeely Associate Professor in the Department of Physical Therapy at the University of Alberta in Edmonton, Canada. She currently holds a joint appointment in the Department of Oncology (Division of Radiation Oncology) and performs clinical research in the Rehabilitation Medicine Department at the Cross Cancer Institute.

Q A

What is the overall aim of your research?

Cancer treatments are given to cure or control cancer. However, the treatments used to fight cancer are aggressive and cancer survivors experience treatment side effects that can impact their ability to function. While the majority of survivors will have acute side effects of treatment, such as hair loss and nausea, that resolve or lessen over time, others will develop chronic conditions such as lymphedema. My research is in the area of Impairment-based Cancer Rehabilitation. In my case, this means that I study the use of physical therapy and exercise to prevent, minimize or treat specific side effects of cancer treatment. The three main side effects that are the focus of my research are cancer-related pain, fatigue and lymphedema. My aim is to better understand how to help survivors to recover from their cancer treatment, and to return to their normal life activities.

Q A

What motivates you as a researcher?

I was a practicing physical therapist in the cancer area before becoming a clinical researcher. I was always seeking out new and better ways to treat my patients. In that way, I was drawn to research, so motivation has not been an issue for me.

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Graduates and staff, from left to right: Mona Al Onazi, Joni Nedeljak, Dr. Christopher Sellar, Katie Boudreau, Kirsten Suderman, Aly McComb, Dr. Margie McNeely, Calvin Kruger, Shreya Rewar and Paula Ospina. Missing: Naomi Dolgoy, Elaine Gobeil, Kacy Nishimura and Arden Pang.

I think there are, however, some character and personality traits that are consistent among us clinical researchers. I have always really liked numbers, and I am fascinated by facts, figures and statistics. I am also a naturally curious person, enjoy solving puzzles, and I am patient and persistent (sometimes called stubborn by those who know me well). I think having these traits are really important if you want to be successful as a researcher. My real motivation, in terms of energy and drive, truly comes from working with cancer survivors. Seeing their day-to-day struggles helps me keep perspective on why I am doing the research and why it is important. I call myself a “frontline clinical researcher”, meaning, I am in the clinic everyday working with the participants who are in my clinical trials. I am very fortunate that I love what I do, so for me, it does not feel like work.

Q A

How has the focus of your research shifted over time?

My research focus has shifted over the last few years in a couple of ways. First, because of the increasing number of cancer survivors, I have had to consider the challenges in the clinical setting in managing

care given limitations in healthcare dollars. In the lymphedema area, for example, my research has shifted to a focus on selfmanagement strategies. As lymphedema is most often a chronic condition, if survivors can be taught to effectively manage their lymphedema and be active partners in their own care, it helps in terms of saving time and resources. Secondly, for many years I was a lone researcher (not counting the support of my husband and children). Now I have a busy lab of graduate students and staff (see photo). As such, my focus has shifted from carrying out single studies to supporting others in learning the skills of clinical research and building the field of cancer rehabilitation. LP

To learn more about the research Margaret McNeely and her team are working on visit: www.ualberta.ca/rehabilitation/ about-us/contact-us/faculty-directory/ margaret-mcneely Editor’s Note: Margie McNeely has joined the Canadian Lymphedema Framework Executive Board as their newest director.

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Helpful Suggestions

Hints and Tips Supportive care for children Lymphedema is a chronic disease. Therapists have to be sure that parents and children understand the meaning of the treatment prescribed before starting. Sometimes, less is better! Start by supporting the parents and child overall as they are overwhelmed by the diagnosis. Encourage fun through enjoyable physical activities such as swimming. Prescribing compression for children Start with the lowest compression (i.e. 20 mm Hg) and help them

choose colours the children like. Be flexible and creative with mild compression garments. Compression garments in children may need to be changed more often than twice a year due to growth as well as wear and tear. Early on, clinicians may be less insistent on wearing a compressive glove, so as not to perturb fine motor skills. Compliance tip Offer to see the child patient with their compression garment within the first 10 days after arrival, in order to make any adjustments to the garment

with the fitter. Support the parents and provide education on lymphatic drainage, facilitating control over their child’s lymphedema. Teachers help Share information about lymphedema with your child’s teacher/school. As well as knowing what to do if your child gets hurt, teachers can help in other ways. They can encourage stories about lymphedema in “show and tell” and help the class understand your child better. LP

Send us your hints and tips Why not make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us? We invite patients, caregivers and health professionals to send in your suggestions to pathways@canadalymph.ca.

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Research and Community

Did you know? Cutting edge research

Attention parents

Parents are invited to participate in a research study. The purpose of this study is to better understand the experiences of parents of children with lymphedema. Volunteers will participate in an informal one hour interview over the telephone, via video conference or face-to-face with an interviewer. Email the Principal Investigator: Elise Radina, PhD, CFLE, Family Studies & Social Work, Miami University. RadinaME@MiamiOH.edu. Facebook: Research-study-parents-ofkids-with-lymphedema.

Alberta Lymphedema Network (ALNET) is pleased to announce funding awarded by the Dianne and Irving Kipnes Foundation and the University Hospital Foundation in Edmonton, Alberta for five pilot research projects. These cutting edge projects led by renowned researchers at the University of Alberta and the University of Calgary focus on 1) metabolite biomarker studies for diagnosis, prognosis and determination of risk factors of primary and secondary lymphedema; 2) examination of the relationship among lymph node removal, radiation treatment and the risk of developing lymphedema via identification

of metabolite biomarkers; 3) development of bio-orthogonal tracers for quantitative measurement of lymph flow/clearance to track lymphatic function and response to therapy, and potentially enable early treatment; 4) use of silicon nanoparticles to enhance imaging as a tool for diagnosis and assessment of lymphatic dysfunction and 5) examination of the link between the metastasis of prostate cancer and the growth of lymph vessels in prostate cancer tumours. For more information about the research and how ALNET is aiming to lead the way to improved diagnosis, treatment and care, visit www.lymphatic researchab.com. LP

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Education Education

Canadian and International Events March 10-11, 2017 The Lymphedema Association of Manitoba is hosting a two-day symposium with Dr. David Keast as Winnipeg, Manitoba Key Note speaker. n www.lymphmanitoba.ca Jun 21-24, 2017 The 7th International Lymphoedema Framework Conference will feature themed plenary sessions on Syracuse, Italy chronic oedema in obesity, oedema and wounds, self-management and service models. n www.lympho.org Sep 18-22, 2017 Barcelona, Spain

26th World Congress of Lymphology. Hosted by the International Society of Lymphology (ISL). n www.lymphology2017.com

October 27-28, 2017 The National Lymphedema Conference will be co-hosted by the Canadian Lymphedema Framework Montreal, Quebec and the Lymphedema Association of Quebec. This bilingual event will feature international Key Note speakers and be simultaneously translated into French. n www.canadalymph.ca

Letters to the Editor... I was so ha ppy to see the Lipedema ar ticle. I had planned to contact you about getting Dr. H erbst to feat ure this topic ne xt June, whi ch is Lipedem a month. I will be sharing the Lipedem a ar ticle, with your permis sion, with some of the Lipede ma Facebook gr oups. Karen Banks , Toronto, Ont ario

the ar ticles eased to see I was very pl ench in Fr nslated into that were tra ba has a ito an thways. M the latest Pa pulation ncophone po significant fra an easy t always have that does no rmation fo ing quality in time access . Having ge ua erred lang in their pref ble suppor ts urces availa of bilingual reso Association mphedema us at the Ly to t ou h ac re AM) as we Manitoba (L mphedema. living with ly ns Manitoba

Thank yo u so much for all you I was able r help. to get a re print of th Lipedema e article pri nted today my prese for ntation in W ashington I also wou , DC. ld like to thank Ann Nicole wh a and o worked with Dr. H and me. erbst This was the first ti worked on me I had writing an article an all made d you it a great experience also very . I am happy tha t the artic getting po le is sitive revi ews. Natalie M unguia Tucson, A rizona

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fit e Non pro ork for th w I . and llo n e o H oundati edema F in t u c called Lip ti onnec ased in C up n g si we are b to e would lik e W . re S e U the can—as th ays if we ave h u for Pathw rticle yo ally an a we t a th is specific a em on Liped p u g in in com interested extremely e b st ld o u p o w we may We hope our reading. rticle on is t of th a the reprin website.

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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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Profile for Canadian Lymphedema Framework

Pathways Winter 2017  

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