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Home , Lymphatic disease, Lymphedema

: Issues and Interventions

By David Keast, MSc MD FCFP, Janet L. Kuhnke, RN BA BScN MS NSWOC DrPsych and Heather Hettrick, PT PhD CWS CLT-LANA CLWT

ymphedema, also known as lymphatic Therefore, careful and focused health assess- (LE), may occur when there is a ment and history taking are essential, particularly failure and subsequent overload of the in determining if there have been previous risk . The condition leads to events that may contribute to development of localized retention of fluid, resulting in LE, or, for example in the case of lower-extremity Lswelling of the extremities. edema, the cause is or venous insuffi- The underlying epidemiology of LE can be dif- ciency. ficult to determine. It may occur as an isolated, single condition or alongside multiple other local or systemic, sometimes life-threatening, diseases.1 Who is affected by LE? It may be caused by congenital abnormalities, Lymphedema affects persons at any age and trauma to the lymphatic system, lymphatic bacter- occurs more often in women.5 In Canada, a recent ial and/or venous congestion, resulting analysis estimates the number of people living in -rich fluid in the tissues.2 Determining with LE and chronic edema to be more than a the cause may be complicated by the challenges million, including persons with venous disease, of quantifying (testing diagnostically) the edema /morbid obesity, (s), disabilities, severity and the changes identified to the affect- non-cancer-related and primary or con- ed tissues and surrounding skin.3 genital LE.6 Clinicians frequently identify LE as a

Note: This document does not address the complexity and speciality education required to assess, treat or manage clients with compression bandaging systems, manual lymphatic drainage, simple lymphatic drainage, modified/multilayer bandaging systems, intermittent pneumatic compression, or any maintenance stocking, device or therapy.

10 Wound Care Canada Volume 17, Number 2 · Summer 2019 result of cancer, yet many common risk factors orie malnutrition, and local (micro) and systemic for chronic edema and LE are non-cancer related (macro) inflammatory conditions.4 and not readily identified.6 Identified LE causes include underlying co-morbidities such as heart failure, renal (kidney) failure, liver disease, venous What is the impact of LE? reflux disease, (both the cancer and the Lymphedema is rarely fatal, but it can be treatment/), lymphatic congestion or debilitating if not diagnosed, treated and man- failure, side-effects from medications, protein cal- aged early. It affects a person’s quality of life

Useful Definitions4 Lymphedema is an abnormal swelling of a limb and/or the related quadrant of the trunk due to the accumulation of protein-rich fluid in the tissue spaces of the skin. Chronic LE is chronic edema lasting more than three months that is minimally responsive to overnight leg elevation or and is accompanied by skin changes such as thickened skin, and . Primary LE is related to congenital absence or malformation of lymphatics and may appear at birth or later in life: • If it develops before one year of age it is called Milroy’s disease. • If onset is during it is often referred to as Meige’s disease, or lymphedema praecox. • If onset is after age 35 it is usually called lymphedema tarda. Secondary LE results from damage to lymphatics.

Volume 17, Number 2 · Summer 2019 Wound Care Canada 11 Lymphedema and Chronic Edema Potential Prevalence: inherited abnormality of the - Canada 2017 atic system.5 The prevalence of pri- Over 1 million* for 36 million population mary LE is 1.15 per 100,000 people.7 Chronic edema related to Primary LE is more common in venous disease: undetermined women (lower limbs), and signs may Morbid obesity: be evident at birth or develop as an Mean incidence of cancer- 570,000 related lymphedema from individual grows or when experien- systematic reviews: cing hormone-level changes.5 Keast Cancer: • All cancers: 15% 310,000 • : 18% and Towers state that based on epi- • Melanoma: 18% lower demiological data, primary LE cases Disabilities/Person wheelchair-bound: extremity, 3% upper extremity 83,000 • Gynecological: 20% uterine, are estimated to affect 20,000 per- cervical, vulvar sons6 (see Figure 1). Surgeries (non-cancer): • Genitourinary: 10% prostate, 40,000 bladder, penile Secondary (acquired) LE is • Sarcoma: 30% more common and the causes (non-cancer): • Head and neck: 4% 20,000 Reference: Shaitelman et al., 2015 are wide-ranging. Secondary LE develops when the lymphatic sys- *USA up to 10 million LE (Stanford) extrapolated to Canada = 1 million 5 Canadian Lymphedema Framework: Pathways, Spring 2017 tem is damaged or traumatized. In developed countries, leading causes Figure 1: Lymphedema and Chronic Edema Potential Prevalence, Canada 20177 of LE include cancers and radiation. The BC Cancer Agency states that tumours that obstruct the lymph- and the ability to manage day-to-day activities.7 atic channels or nodes occur with breast cancer, Persons living with LE experience psychosocial and gynecological, colorectal and genitourinary stress and physical changes that may be relat- surgery, lymphoma, melanoma, sarcoma, and ed to body image distortion, pain, depressive head and neck cancer.8 used symptoms leading to diagnosed depression, skin to treat lymph nodes, or biopsies infections and related , reduced range of and/or dissections can further contribute to LE motion and subsequent reduced mobility (upper development. In Canada, of growing concern is and lower limbs), loss of income and possible an increase in LE cases related to substantially employment changes.8 increased rates of obesity and morbid obesity. Lymphedema-related swelling usually presents Consequently, understanding LE is an important in the legs or arms due to an obstruction or inad- issue for clinicians. equate function of a lymph channel.9 Congestion In developing countries, a common cause of of the lymphatic fluid accumulates in the inter- secondary LE is lymphatic (LF) (see Figure stitial compartment, leading to local and exten- 2).10 LF is a severe type of edema resulting from sive limb swelling that may present unilaterally from parasites (three types of filarial or bilaterally. Though LE and chronic edema are roundworms) that impair the lymphatic system. frequently assessed in the extremities, they can LF leads to debilitating pain, deformity of body occur throughout the body, and the trunk and parts, emotional strain, social stigma and employ- genitals are often involved. ment changes.11 It is estimated that 1.3 billion people globally are at risk of LF infection, with Types of Lymphedema: Primary and more than 120 million already infected,4 mostly in Secondary Lymphedema tropical and sub-tropical regions, particularly in Primary (idiopathic) LE occurs when a person is poor countries, where sanitation and housing are born with a congenital abnormality or has an of poor quality.4

12 Wound Care Canada Volume 17, Number 2 · Summer 2019 Stages of Lymphedema The International Society of Lymphology presents a four-stage clinical system with associated fea- tures specifically related to the physical condition of the extremities.1 Table 1 outlines the stages.

How is lymphedema classified? Lymph-related edema is classified as acute or chronic (see Table 2). The true epidemiology of risk factors for the development and progression of LE remains uncertain, and more research is need- ed. Further complicating the identification of risk factors is that there may be a considerable delay between the causative event and the onset of LE.4 Consistent physical assessment includes vital signs, patient’s general appearance (inspection, palpation), measurement of upper and lower limb(s) starting with the unaffected side to estab- lish a baseline.

It Takes a Committed Team Figure 2: Standards of practice have been developed under the umbrella of the International Lymphoedema dards worldwide. Current standards of practice Framework. This collaboration of stakeholder for lymphedema services, as taken from the groups includes academics, health profession- International Lymphoedema Framework’s 2006 als, patients/families, industry and community document titled “International Consensus: Best organizations to promote research, best practice Practice for the Management of Lymphoedema,” guidelines, and to set clinical lymphedema stan- are as follows:13

Table 1: Stages of Lymphedema1 Stage Features 0 – Subclinical or latent • Swelling is not yet evident; there are subtle changes in fluid/tissue composition condition and changes in subjective symptoms. • Symptoms may exist months or years before overt edema occurs. • Heaviness and discomfort and aching are experienced. 1 – Spontaneously • There is early accumulation of fluid relatively high in protein content (compared reversible with venous-related edema), which subsides with limb elevation. Pitting may occur. An increase in various types of proliferating cells may also be seen. 2 – Spontaneously • Early stage: Limb elevation alone rarely reduces the tissue swelling, and pitting is irreversible manifest. • Later stage: Limb may not pit as excess subcutaneous fat and develop. 3 – Lymphostatic • Swelling is present. Pitting can be absent. Trophic skin changes such as acanthosis, alterations in skin character and thickness, further deposition of fat and fibrosis, and warty overgrowths may be present. Note: A limb may exhibit more than one stage, which may reflect alterations in different lymphatic territories.

Volume 17, Number 2 · Summer 2019 Wound Care Canada 13 • Identify people at risk for or with lymphe- Common Risk Factors* dema via systemic organization for the iden- As part of careful assessment and history taking, tification of those at risk, regardless of cause. clinicians should consider the following risk factors: Implement and monitor to ensure patients • Trauma such as a sprain receive high-quality education and lifelong care. • Trauma in at-risk regions due to punctures, • Empower people at risk for or with pressure measurement, injections, wound/drain- lymphedema through the creation of individual age complications plans of care with emphasis on self-manage- • Surgery that interferes with lymph nodes or ment developed in partnership with patients, vessels (lymph node dissection, ), and involving relatives and caregivers where varicose vein surgery, orthopedic surgery appropriate. • Chemotherapy (taxanes) • Provide treatment services that deliver • Scar formation in the form of fibrosis/radio- high-quality clinical care that integrates com- dermatitis from post-op munity, hospital and hospice-based services. Cancer, various forms (melanoma, gynecological • Provide universal access to trained health- cancer, head and neck cancer, sarcoma) care professionals, including specialists, that • Intra-pelvic or intra-abdominal tumours that incorporates ongoing assessment, planning, involve/compress lymphatic vessels education, advice, treatment and monitoring. • Radiotherapy in the regions of the lymph nodes, • Provide high-quality clinical care for people mammary glands or pelvis (postoperative) with cellulitis/ involving agreed-upon • Recurrent infections, infection of soft tissues protocols for the rapid and effective treatment of • Chronic skin disorders and inflammation skin infections such as cellulitis/erysipelas, as well • Cording (axillary web formation) as the prevention of recurrence. Care should be • Seroma formation implemented and monitored by trained and certi- • Obesity, poor nutrition fied health-care specialists. • Congenital predisposition • Provide compression garments for people • Hypertension with (or at risk for) lymphedema and provide • Insertion of a pacemaker protocols for assessment and provision of these • Arteriovenous shunt for dialysis garments. • Living in or visiting a geographic area endemic for lymphatic filariasis • Provide multi-agency health and social care • Thrombophlebitis and chronic venous insuffi- to enable comprehensive assessment for any ciency client at risk for or with lymphedema who • Varicose vein stripping and vein harvesting requires multiagency support, to ensure access • Unresolved asymmetrical edema and care appropriate to their needs are met by • Concurrent medical illnesses such as phlebitis, health and social services. hyperthyroidism, kidney or cardiac disease • Bed/chair-dependency, immobilization and Why is assessing and diagnosis LE so prolonged limb dependency (pelvic and gen- challenging? ital-scrotal edema) Careful history taking and a comprehensive *Not all inclusive assessment support identification of risk fac- Various medications can cause edema, including tors to distinguish LE from other conditions (see calcium channel blockers (amlodipine), non-ster- sidebar). oidal anti-inflammatory drugs (NSAIDs) such as Early assessment and diagnosis enhance the ibuprofen, corticosteroids such as prednisolone, opportunity of successful treatment and manage- and hormonal therapies such as for hor- ment. Investigations may include but are not lim- mone-receptor-positive breast cancers.13 ited to ultrasound to assess tissue characteristics,

14 Wound Care Canada Volume 17, Number 2 · Summer 2019 Table 2: Clinical Parameters of Lymphedema Type Clinical Characteristics Acute • Short-lived and self-limiting – less than 3 months • Imbalance of filtration and reabsorption • Local inflammation Chronic • Longer-term – greater than 3 months • Minimal responsiveness to elevation of the limb(s) and/or use of diuretics and a positive Kaposi- Stemmer’s sign: • The normal thickness of the skin fold at the 2nd toe is 2 to 4 mm. • A positive Kaposi-Stemmer’s sign – inability to raise skin fold – means fibrosis is already present (at least Stage 2). • A negative Kaposi-Stemmer’s sign does not exclude the diagnosis of LE but means the limb/ patient should be monitored, as it may be too early in the LE development to show signs of fibrosis. ankle-brachial pressure index (APBI), toe-brachial that point would be considered lymphedema. pressure index (TBPI), colour duplex Doppler One of the most common forms of lower ultrasound to rule out and extremity LE is phlebolymphedema. Chronic evaluate venous abnormalities, a screening lab venous hypertension leads to a high filtration panel and a filarial antigen test (if the person is at pressure that results in increased fluid levels in high risk).4 Assessment includes overall physical the interstitial tissues. This excess water load health, pain with and without activity, mobility, begins to exceed the lymphatic transport cap- employment and work capacity, and psychosocial acity. Over time, this can lead to lymphatic hyper- and spiritual well-being. tension that damages the lymphatic structures. When the lymphatic system becomes damaged/ of Lymphedema impaired, the high protein fluid in the interstitial Regardless of the underlying cause, lymphedema tissues creates an inflammatory reaction, resulting is a manageable condition with established inter- in the fibrotic changes commonly seen in patients ventions. In order to adequately manage the con- with chronic lymphedema. This disruption, com- dition, early and proper diagnosis is essential. bined with the venous insufficiency, contributes For clinicians, one of the challenges is learning to venous ulceration. Excessive demand on the to differentiate between lymphedema and other lymphatics results in a loss of fluid homeostasis. types of edema (e.g., from health failure or venous Clinically, this is seen as edema. However, the insufficiency). Of particular importance is the cur- underlying pathophysiology is damage and rent paradigm shift in thinking that all edema is the result of lymphatic drainage failure.14,15 This represents the prevailing thought that all edema is on a lymphedema continuum; when the body’s system is overwhelmed, it results in a transient form of LE, whereas true damage or impairment to the lymphatic system leads to the disease of LE.14 For example, a sprained ankle will lead to swelling—which involves lymphatic dysfunc- tion—which will resolve. This is sometimes called lymph stasis, because it resolves within a few weeks. If the problem does not resolve, the dam- age to the lymphatics becomes permanent, and at Figure 3: The effects of lymphedema

Volume 17, Number 2 · Summer 2019 Wound Care Canada 15 dysfunction in both the venous and lymphatic • Creation of mobility and activity plans systems leading to phlebolymphedema—mixed • Implementation of a compression bandaging venous and .16 strategy and garment management Further adding to the diagnostic challenge • Pharmacological management is , which is often confused with LE. An integrated team, which includes a variety of Lipedema is a fat disorder associated with bilat- health-care professionals and other service provid- eral adipose deposition (typically from the ankles ers along with the patient/family, should establish to the hips), and when present, it hinders and treatment and management goals for underlying constricts lymphatic flow. However, the pres- diseases and conditions. For LE, overall manage- ence of lipedema can result in the development of LE18 and is referred to as lipolymphedema. ment includes meticulous skin care and hygiene, Additionally, patients can present with lipedema education and patient/family engagement and along with phlebolymphedema, a condition participation, manual lymphatic drainage (MLD), termed phlebolipolymphedema. compression bandaging, simple lymphatic drain- As a general guideline, lymphedema or any age (SLD) involving limb elevation, and regular chronic edema lasting more than three months, exercise to activate the muscle pumps (upper and and minimally responsive to limb elevation and/ lower extremities). Intermittent pneumatic com- or diuretics and with one or more secondary skin pression (IPC) can help to maintain reduced limb changes such as a positive Kaposi-Stemmer’s volume; however, the long-term use of compres- sign6 is clinically relevant to support the diagnosis sion garments is essential to help control LE after of lymphedema. the initial treatment phase. Although there cur- rently is no cure, lymphedema can be successfully managed as described above, but it does require a Complications Related to lifelong commitment. Throughout this time, com- Lymphedema munication among team members and across set- Complications related to LE vary by individual and tings (home and community care, long-term care, may involve physical signs such as swelling, heav- rehabilitation unit, and acute or emergency care) iness in the extremity, numbness, pain and infec- is crucial. It is essential that clinicians collaborate tion.18 Persons with lower-limb extremity LE report with the patient and work as a team to identify a higher symptom burden and increased infection key persons who will support and aid the patient complications (episodes of infection, hospitaliza- in all decision-making and activities throughout tions) when compared with those with upper-limb the lifelong LE management process. extremity LE.4,18 Quality of life domains affected by LE include physical health, psychological well-be- ing, level of independence, social relationships, What do you see, and how do you environment, spirituality/religion and personal treat LE? beliefs. The following section describes these aspects in relation to living with LE.27 Skin Complications/Infections The Impact Treatment and Management Goals Disorders of the lymph system, whether systemic for Patients with LE (macro-lymphedema) or localized (micro-lymph- The following are the primary goals for treatment edema), produce cutaneous regions susceptible and management for LE patients: to infection, inflammation and carcinogenesis.20–22 • Patient education related to pain and psycho- Some of the most common skin complications social and spiritual issues include: • Promotion of a healthy lifestyle • Dryness (cracked, flakey, rough); fissures • Prevention of skin and tissue infections • Cellulitis/erysipelas (infection of the skin and

16 Wound Care Canada Volume 17, Number 2 · Summer 2019 Figures 4 to 8: Common Skin Complications Caused by Lymph System Disorders

Figure 4: Dry skin Figure 6: Papillomatosis

Figure 5: Taut, shiny skin

Figure 7: Skin folds Figure 8: Lymphorrhoea Images used with permission (Keast, 2017).

subcutaneous tissues most commonly caused or stasis dermatitis) by streptococci and Staphylococcus aureus) • Contact dermatitis (an allergic or irritant • Hyperkeratosis (over-proliferation of the reaction) layer, producing scaly grey or brown patches) • (a rare form or lymphatic • Folliculitis (inflammation of hair follicles) cancer)4, 10, 13 • Fungal infections The Interventions • Lymphangiectasis, also known as lymphangi- Prevention of skin damage such as cuts and irri- omata (soft fluid-filled projections caused by tations for patients at risk for or with LE involves dilations of lymphatic vessels) consistent skin hygiene and care to keep the • Papillomatosis (raised firm projections on skin intact, clean, dry and moisturized. Cuticles the skin due to dilatation of lymphatic ves- should not be cut, and artificial nails should not sels and fibrosis. This may be accompanied by be applied on patients with upper extremity LE. If hyperkeratosis.) skin damage occurs, the area should be washed • Lymphorrhoea (occurs when lymph leaks from and patted (not rubbed) dry, and hydrating, low- the skin surface) pH lotions and/or emollients applied. If needed, • Ulcerations (occurs with underlying arterial and and in consultation with a physician/nurse prac- venous disease) titioner, topical antibiotics should be applied and • Venous eczema (also known as varicose eczema, progress monitored. Signs of possible infection

Volume 17, Number 2 · Summer 2019 Wound Care Canada 17 include rash, itching, increased skin temperature ongoing and consistent measurement of the limb’s or fever, and flu-like symptoms. Any symptom affected area and comparison to baseline. should be monitored and reported to a health- The Interventions 4 care professional. Pain is reported in 50% of per- Maintenance of a healthy weight in persons at sons with LE and associated skin complications, risk for LE or who are obese has been shown to be so proper management is essential, as it affects a of benefit.1,23–25 Nutritional support to optimize person’s well-being and ability to cope and par- weight in combination with activity and exercise 13 ticipate in care. benefits the patient’s overall health. It is import- Skin care for the limb at risk for or with LE ant to monitor the affected area during and after includes the following: activity for changes in size, shape, texture, sore- • Monitor skin, especially in less visible areas. Skin ness and similar symptoms.4 Rest periods between should be monitored daily for dryness, cuts, work and activity allow for limb recovery.4 scrapes or bruising on the limb or affected area. Functional care planning includes the following: It is important to look between the toes and fin- • Optimize mobility and activity through light gers and under skin folds if present. exercises that encourage lymph drainage. All • Avoid any type of constriction on the affected exercise should be performed while wearing limb, such as tight clothing, shoes and jewellery, compression bandages or garments. Clinicians as well as blood pressure cuffs and venipunctures. should refer their patients to a certified lymphe- • Assess and treat infection if present with the dema therapist, who will be expert at assessing proper dressings and compression bandages. and treating the condition. These therapists • Maximize nutritional status with a referral to a may be nurses, physiotherapists, occupational registered dietitian. therapists and therapists who have • Manage moisture, with a referral to a nurse spe- undergone specialized training to meet national cialized in wound, ostomy and continence. training standards.26 • Assess and address for continence if appro- • Ensure equipment and mobility aid(s) are fre- priate, with a referral to a nurse specialized in quently assessed and monitored, as a patient’s wound, ostomy and continence, and/or a nurse needs may change. continence adviser. • Assess and modify situations where the affected • Assess pain using a validated tool, and manage area is experiencing pressure from equipment, the pain based on the assessment. garments, medical-devices and clothing (e.g., sitting, standing or Level of Independence – Mobility and crossing legs). Range of Motion • Refer the patient for The Impact professionally fitted Limb weight may preclude a patient living with compression hosiery. LE from engaging in and performing activities of If personal finances daily living and instrumental activities of daily liv- preclude obtaining ing. Immobility primarily refers to lower extremity appropriate garments, edema and failure of the calf-muscle pump, and the clinician should includes those with fixed ankles and those who refer the patient to a are chair-bound.6 Maintaining adequate levels of social worker or other energy, managing fatigue, and achieving sleep and appropriate support rest are important for supporting patient activity professional. plans. Clinicians should emphasize to the patient • Ensure the patient that being active improves lymphatic and venous protects limb tis- flow to reduce limb size/volume. There should be sues while engaged

18 Wound Care Canada Volume 17, Number 2 · Summer 2019 in activity. Clinicians should refer the patient essential.4 Certified massage therapists,27 certified to a certified garment specialist for long-term compression garment therapists and nurses play management. Limbs that are at risk should have an important role. Therapy includes providing skin compression for strenuous activities except care and hygiene, manual lymph drainage (MLD), where there are contraindications such as open compression therapies such as intermittent pneu- wounds or poor circulation.4 matic compression (IPC), exercise, and extensive • Encourage the patient to obtain professionally patient education for lifelong self-management.28 fitted footwear. Once the limb has been decongested and has • Assess the ability of the patient to safely partici- returned to as near normal as possible, ongoing pate in work or school, social and leisure activities therapy and protection of the limb are essential. through self-pacing, protection of the limb and All aspects of complete decongestive therapy skin, and learning the most efficient and safe way should be continued by the patient or with assist- to participate. Referrals can be made to an occu- ance from a caregiver or family member, for life. If pational or physical therapist for support. the patient has skin breakdown or open wounds, • Prevent falls through education about fatigue and single-use bandage systems (2-, 3-, or 4-layer) about the correct use of equipment and devices. can be used until the wound or skin issue has • Discuss proper sleep hygiene and positioning resolved, in combination with appropriate wound with the patient. management. Patients should wear appropriate compression for their , lymphe- Management of LE dema and lifestyle at all times other than during The Impact personal hygiene activities. For patients requiring Day-to-day management of LE includes the use of long-term use of garments and devices, educa- compression. The proper type of compression will tion should be provided to the patient/family and be prescribed and may include compression hos- caregivers. Clinicians should provide education to iery, stockings, hook-and-loop fastened devices patients, family and caregivers regarding the care, or wraps, sleeves, bandages, night garments, washing and drying of each garment, and should bandaging systems (modified/multilayer inelastic support patients if finances preclude them from lymphedema bandaging [MLLB]), and intermittent obtaining appropriate garments. pneumatic compression used to encourage fluid management back to the trunk of the body. These Psychological Health treatments vary and The Impact may be used in combin- Psychological health is affected when learning ation depending on the about and learning to live with LE. Living with LE situation. is complex and is associated with poor self-es- The Interventions teem, altered body image, depression and anx- 4 The standard of care iety. In addition, loneliness, isolation and loss of for the management of sense of self can interfere with one’s ability to LE is complete decon- cope. Lowered well-being may affect the patient’s gestive therapy (CDT).1 ability to engage and participate in their health- Interventions focus care decisions, family relationships and commun- primarily on decreasing ity. Patients may present with distress, poor cop- the edema to return ing skills and limited engagement with caregivers 13 the limb to normal, or and treatment planning. as close to normal as The Interventions possible. Early assess- It is important use validated tools to screen for ment and treatment are depressive symptoms, depression, anxiety, feelings

Volume 17, Number 2 · Summer 2019 Wound Care Canada 19 of worthlessness and reduced hope. If feelings of manage self-care when living with LE, which worthlessness, depression or anxiety persist for needs to be taken into consideration when plan- longer than three months, the patient should be ning long-term care. referred to mental health services.13 Psychologists, Patients should be encouraged to participate social workers and counsellors may offer ther- in treatment and management planning as much apy, counselling and culturally relevant supports. as possible. Clinicians should be conscious of Sleep and rest patterns should be reviewed. caregiver fatigue and burnout. For patients with Some patients may benefit from complement- cognitive impairment or fatigue, family members ary and alternative therapies (relaxation therapy, or friends should be engaged as a care partner in mindfulness, mind-body therapy) as is reported communication and decision-making as part of the in populations living with chronic illnesses.29 integrated care team.35 Throughout the process it Furthermore, the role of traditional, cultural or folk is important that the clinician provide privacy and healers should be considered.30 Delivery of cultur- build trust, so the patient feels free to discuss issues ally sensitive education for the patient and family relating to sexual activity and intimacy. members is of benefit. It is important that the focus be on LE prevention and management strat- Spirituality egies, including the benefits of activity, exercise The Impact 31–32 and relaxation to help the patient adapt. For Patients living with LE often receive hope, sol- employed patients and those in active volunteer ace and encouragement from friends and family roles, clinicians should consider their work-abil- members through their spiritual values, beliefs ity, and support work adaptations as needed. and traditions.36 Health-care professionals are in Caregiver burnout can be prevented by engaging a unique position to encourage clients regarding and supporting the family unit. their spiritual health, as it can promote psycho- logical well-being and emphasize holistic care. Social Activities Spiritually is defined as the patient’s “belief in The Impact and experience of a supreme being or an ultim- Adapting to life with LE may be challenging. ate human condition, along with an internal set Changes in body image, the perception of self, of values and active investment in those values, sexual activity and the ability to participate in a sense of connection, a sense of meaning, and social activities may change or be impeded. It is a sense of inner wholeness.”37 Hengen further important when living with a chronic disease to describes spirituality as a balance between a maintain social contacts and engagement with client’s social, emotional, and spiritual wellness;38 friends, family and community. this is not just an individual process, as individuals The Interventions live in social circles and in community. Clinicians should consider referring the patient The Interventions to and engaging the patient in a chronic-disease Spiritual wellness, while adapting to life with self-management program35 and, if possible, LE, may be challenging, as one’s ability to par- encourage family members or close friends to ticipate in spiritual readings and meditations, attend classes. Self-management of LE is com- religious and faith-based activities or rituals may plex and includes a modified version of complete be altered. Conducting a spiritual assessment decongestive therapy.34 In addition, self-care encourages the patient to remain connected includes lifestyle modifications, nutrition and with their practices, faith or religious community. weight management, organization of medical Patients often identify more strongly with health- appointments and day-to-day management of care professionals who assess them as whole indi- other aspects of living. As patients’ underlying viduals with spiritual needs. Any spiritual well-be- health issues change, so does their ability to ing assessment should be conducted using a

20 Wound Care Canada Volume 17, Number 2 · Summer 2019 validated tool, for example the HOPE Approach login.ezproxy.cbu.ca/login?url=https://search. to Spiritual Assessment; Spiritual Assessment credoreference.com/content/entry/galegnaah/ lymphedema/0?institutionId=7684. Tool.39 Clinicians should support their patients by 10. Grada AA, Phillips TJ. Lymphedema: Diagnostic workup encouraging them to be in contact with mem- and management. J Am Acad Dermatol. 2017;77:995– bers from their spiritual community and spiritual 1006. Retrieved from: http://dx.doi.org/10.1016/j. leaders. These efforts support the patient’s psych- jaad.2017.03.021. ological health and well-being. 11. World Health Organization. Key Facts: Lymphatic Filariasis. Geneva: World Health Organization; 2018. Retrieved from: www.who.int/en/news-room/fact-sheets/detail/ Conclusion lymphatic-filariasis. Living with LE is complex. This paper has focused 12. Keeley V, Piller N. Edema-causing medications. Pathways. on key complications, assessment, and conducting 2017:1–2. Retrieved from: https://canadalymph.ca/ wp-content/uploads/2015/04/Edema-causing- a careful history taking and a focused health medications.pdf. assessment, as well as identification of interven- 13. International Lymphoedema Framework. International tions and considerations for patients living with or Consensus: Best Practice for the Management of at risk for LE. Patients with LE experience physical, Lymphoedema. London, UK: MEP Ltd.; 2006. psychosocial and spiritual issues and require care 14. Mortimer PS, Rockson SG. New developments in clinical from an integrated care team. Communication aspects of lymphatic disease. J Clin Invest. 2014;124(3). Retrieved from: www.jci.org/articles/view/71608. and education are essential for proper assessment, 15. International Union of Phlebology. UIP consensus docu- treatment and management. ments. San Francisco [Secretariat]: International Union of Phlebology; 2013. Retrieved from: www.uip-phlebology.org/ References uip-consensus-documents. 1. International Society of Lymphology. The diagnosis and treat- 16. Pearson IC, Mortimer PS. Lymphatic function in severe chron- ment of peripheral lymphedema: 2016 consensus document ic venous insufficiency. Phlebolymphology. 2004;44:253–257. of the International Society of Lymphology. Lymphology. Retrieved from: www.phlebolymphology.org/wp-content/ 2016;49:170–184. uploads/2014/09/Phlebolymphology44.pdf. 2. Macdonald JM, Ryan TJ. Lymphoedema and the chronic 17. Ratliff CR. Lymphedema. In: Bryant RA, Nix DP, editors. Acute & wound: The role of compression and other interventions. In: Chronic Wounds: Current Management Concepts. 5th ed. St. Wound and Lymphoedema Management. Geneva: World Louis, Miss: Elsevier; 2016. pp. 227–238. Health Organization; 2010. pp. 63–84. 18. Ridner SH, Deng J, Radina FE, Thaidens SRJ, Weiss J, Dietrich 3. Fife CE, Sieggreen MY, Kline RA. Lymphedema. In: Baranoski S, MS, et al. Symptom burden and infection occurrence among Ayello EA, editors. Wound Care Essentials: Practice Principles. individuals with extremity lymphedema. Lymphology. 4th ed. Wolters Kluwer; 2012. pp. 358–375. 2012;45:113–123. 4. Keast D. Lymphedema. PowerPoint Presentation, unpub- 19. World Health Organization. Programme on mental health: lished. 2012. WHOQOL measuring quality of life. Geneva: World Health 5. Canadian Lymphedema Network. What is Lymphedema? Organization; 1997. pp. 1–15. Retrieved from: www.who.int/ 2015. Retrieved from https://canadalymph.ca. iris/handle/10665/63482. 6. Keast D, Towers A. The rising prevalence of lymphedema 20. Carlson JA. Lymphedema and subclinical lymphostasis in Canada: A continuing dialogue. Canadian Lymphedema (microlympedema) facilitate cutaneous infections, inflam- Magazine. 2017(Spring):5–8. matory dermatoses, and neoplasia: A locus minoris resist- entiae. Clinical Dermatology. 2014;32(5):599–615. 7. 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Volume 17, Number 2 · Summer 2019 Wound Care Canada 21 24. Dietitians of Canada [UnlockFood.ca]. BMI Calculator. Toronto: post-mastectomy lymphedema clients undergoing com- Dietitians of Canada; 2019. Retrieved from: www.unlockfood. prehensive decongestive therapy: A clinical trial. PloS One. ca/en/Articles/Weight-Loss/BMI-Calculator.aspx. 2018;13(1):e0190231. 25. Twells LK, Gregory DM, Reddington J, Midodzi WJ. Current 32. Ha K, Choi S. The effect of PNF technique program after mas- and predicted prevalence of obesity in Canada: A trend anal- tectomy on lymphedema patients’ depression and anxiety. J ysis. CMAJ. 2014;2(1):E18–E26. Phys Ther Sci. 2014;26(7):1065–1067. 26. Canadian Lymphedema Framework. Certified lymphedema 33. Lorig K, Sobel D, Gonzalez V, Minor M. Living a Healthy Life therapists. Toronto: Canadian Lymphedema Framework; with Chronic Conditions. Boulder, CO: Bull Publishing, 2007. 2015. Retrieved from: https://canadalymph.ca/certified- 34. Todd M. Self-management of chronic oedema in the commu- lymphedema-therapists. nity. Br J Community Nurs. 2014;19(Sup 4):S30–6. 27. Canadian Lymphedema Framework. Clinical Guidelines, 35. Heppner PP, Tierney CG, Wang Y-W, Armer JM, Whitlow NM, Position Papers, and Publications. 2019. Retrieved from Reynolds A. Breast cancer survivors coping with lymphede- https://canadalymph.ca/health-professionals/clinical- ma: What all counsellors need to know. J Couns Dev. guidelines-position-papers-and-publications/. 2009;87:327–339. 28. Jobst LymphCARE. Complete Decongestive Therapy. 36. Ridner SH, Bonner CM, Deng J, Sinclair VG. Voices from Luxembourg: BSN Medical; 2018. Retrieved from: www. the shadows: Living with lymphedema. Cancer Nurs. lymphcareusa.com/professional/therapy-solutions/ 2012;35(1):E18–E26. complete-decongestive-therapy.html. 37. McLeod DL. Spirituality and illness in professional literature. 29. Larson PD, Woods JM. Complementary and alternative In: Wright LM, editor. Spirituality, Suffering, and Illness: Ideas therapies. In: Kramer-Kile ML, Osuji JC, Larsen PD, Kubkin IM, for Healing. Philadelphia: F.A. Davis.; 2005. pp. 63–108. editors. Chronic Illness in Canada. Burlington, MA: Jones & 38. Hengen T. Medicine Wheel Model of Mental Health. Victoria, Bartlett; 2014. pp. 393–427. Canada: Friesen Press; 2012. 30. Kleinman A. Client and Healer in the Context of Culture. 39. American Family Physician. Spiritual assessment tool and California: University of California Press; 1980. pp. 36–72. HOPE approach to spiritual assessment. Kingston, Canada: 31. Abbasi B, Mirzakhany N, Angooti Oshnari L, Irani A, Queen’s University, Faculty of Health Sciences, School of Hosseinzadeh S, Tabatabaei SM, et al. The effect of relax- Medicine; 2001. Retrieved from: https://meds.queensu.ca/ ation techniques on edema, anxiety and depression in source/spiritassesstool%20FICA.pdf.

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