Adherence to Exercise in Phase Two of Complete Decongestive Therapy

Recent research has shown that most individuals with secondary lymphedema can safely engage in aerobic, resistive, and flexibility type exercises during Complete Decongestive Therapy (CDT) phase 2; however, adherence to exercise remains low for this population. Since lymphedema is a chronic disorder, strict adherence to CDT phase 2, or self-management of symptoms, is necessary. In general, it appears difficult for individuals to adhere to all components of CDT phase 2, namely wearing of the compression garment, nail and skin care, manual lymphatic drainage, and exercise. The current study sought to explore factors influencing follow through with the exercise routine prescribed by the lymphedema therapist and the level of involvement in other physical activities. All individuals with secondary lymphedema, 12-15 months post-initial evaluation, from 2 local lymphedema clinics were invited to participate in this study. A survey was developed to gather descriptive information on the participants as well as examine the client and clinical factors associated with participants’ adherence to a prescribed exercise routine. Eight individuals returned the survey, four with lymphedema in the bilateral lower extremities (LEs), one unilateral LE, two unilateral upper extremities (UEs), and one groin. The most common cause of lymphedema was cancer, however, infection, surgery, trauma, and disease were also causes present in this study. Adherence to exercise seemed to be associated with lymphedema location, original diagnosis, perception of exercise benefits for daily activity performance and self-confidence, level of satisfaction with the exercise routine, recall of a prescribed exercise routine, and involvement in a variety of physical activities. Individuals with UE lymphedema, secondary to breast cancer, reported two of the highest three adherence percentages and all three of the highest percentages were associated with participation in a wider variety of physical activities. Amongst the eight participants, a higher adherence Giles – Adherence to Exercise in Phase 2 CDT 4 percentage was associated with the ability to recall the prescribed exercise routine, knowledge of exercise benefits for the lymphatic system, perceived effects of exercise on daily activities, increased self-confidence as a result of exercise, and the level of satisfaction with the routine. Further research should be implemented to compare the challenges of exercise between noncancer versus cancer-related groups as well as to explore how occupational therapists working in this field can provide realistic and meaningful physical activity options for clients. Giles – Adherence to Exercise in Phase 2 CDT 5 Living with secondary lymphedema requires a life-long commitment to managing its symptoms and taking the necessary precautions. This chronic disorder of the lymphatic system involves the filling of interstitial tissues with protein-rich lymph fluid, leading to an uncomfortably swollen body part, typically of the upper or lower extremity, rarely bilateral. If left unmanaged, this disorder can lead to severe functional and physiological deficits. Deficits experienced as a result of an untreated edematous extremity include loss of limb flexibility, numbness, and pain. These symptoms are present in both primary and secondary forms of lymphedema. To avoid further exacerbation of symptoms, individuals can see an occupational therapist or physical therapist who is a Certified Lymphedema Therapist and undergo Complete Decongestive Therapy (CDT) phase 1. This process involves non-invasive methods to reduce the consequences of lymphedema (swelling and fibrosis of the affected body part). Once the reduction of lymphedema symptoms levels out, the client is taught how to selfmanage and is discharged to CDT phase 2 (self-management). This second phase involves client follow through with previous CDT phase 1 procedures. Lymphedema therapists play a vital role not only in reducing symptoms, but also in educating and collaborating with clients during discharge planning to design an effective self-treatment plan. Few individuals are consistently successful in the CDT phase 2, despite the fact that the physical effects of lymphedema greatly impair everyday activities (Bogan, Powell, & Dudgeon, 2007). Exercise is a key component of this phase and although recent studies support its positive effect on the physical and social repercussions of lymphedema, exercise is still feared by some to exacerbate lymphedema symptoms (McClure, McClure, Day, & Brufsky, 2010). Muscle contractions during exercise promote the flow of lymph fluid and an increase in body mobility, but further swelling is a possibility if the exercise routine is not slow, steady, and progressive Giles – Adherence to Exercise in Phase 2 CDT 6 (National Lymphedema Network, 2009a). Thus, it is imperative that lymphedema therapists educate clients on the safest approach to exercise and collaborate with clients to ensure success in maintaining an exercise schedule. Studies have shown that maintaining an exercise schedule individually and in groups can be beneficial after receiving instruction by an individual knowledgeable in lymphedema and its symptoms. In individuals with breast cancer related lymphedema (BCRL), adherence to an exercise and relaxation program in the clinic and later the home leads to reduced fluid of the affected arm, weight loss, and improved mood and active shoulder range of motion (McClure et al., 2010). Similarly, participation in the The Lebed Method, a dance and movement program focusing on deep breathing and slow, non-resistive, repetitive exercises can increase shoulder range of motion and health-related quality of life (Sandel et al., 2005). Exercise promotes a healthy lifestyle and improves lymphatic function when used on a regular basis (National Lymphedema Network, 2009a). Flexibility and resistive exercises can improve range of motion and prevent joint contractures, enabling individuals to better function physically and emotionally (McClure et al., 2010). Through experiencing these better outcomes with physical activity, participants are more likely to have a heightened self-efficacy and adhere to remedial exercise in CDT phase 2 (McClure et al., 2010). Adherence has been used to signify the “process by which patients’ behaviors match the recommendations they have agreed upon with their healthcare professional” (Palmer, 2006, p. 1). Research supports the positive effect of exercise on everyday life in those with lymphedema. Thus it is vital that prior to client discharge, occupational therapists consider the factors influencing exercise follow through in phase 2 CDT. Giles – Adherence to Exercise in Phase 2 CDT 7 Background Types and symptoms of lymphedema. Lymphedema has the power to adversely affect many aspects of everyday life. This chronic disorder is characterized by the inability of the lymphatic system to regularly transport lymph fluid in and out of lymph nodes in particular parts of the body (Pierson & Fairchild, 2008). The lymphatic system is overwhelmed by the high volume of protein-rich lymph fluid and it pools in the interstitial tissues. The filling of the tissues and obstruction of lymph flow are seen unilaterally or bilaterally as a swollen extremity, trunk, neck, or groin region of the body. Lymphedema may be diagnosed when the swollen area of the body contains at least 200 milliliters in excess volume or where there is at least a 2centimeter difference in the circumference between the affected and unaffected limb (Ahmed, Thomas, Yee, & Schmitz, 2008). The pooling of lymph fluid can be a result of either primary or secondary causes. Primary lymphedema is a rare, congenital type and involves the abnormal development of the lymphatic system. This congenital form can be present in one limb or up to all four limbs. The age of onset may be birth, puberty, or adulthood and the specific cause is unknown (National Lymphedema Network, 2009b). However, it is understood that primary lymphedema is commonly present with vascular abnormalities, such as a hemangioma or lymphangioma (National Lymphedema Network, 2009b). Secondary lymphedema is acquired as a result of surgery, radiation, infection, or trauma. Surgeries that involve lymph node removal are likely to cause lymphedema and these types of surgeries are often done for those with breast, gynecologic, head and neck, prostate, testicular, bladder, or colon cancer (National Lymphedema Network, 2009b). In fact, in breast cancer patients, 6 to 30% of those undergoing cancer treatment will develop lymphedema (Tahan, Johnson, Mager, & Soran, 2010). Radiation therapy for various Giles – Adherence to Exercise in Phase 2 CDT 8 cancers can also damage lymph nodes and vessels, causing the build up of scar tissue and hindrance of the lymph flow. For each individual at risk of developing secondary lymphedema, the time of onset will vary anywhere from immediately post-operative to years later (National Lymphedema Network, 2009b). The symptoms of lymphedema vary in severity and include the following: tight feeling of the skin, decreased flexibility in the hand, wrist or ankle, difficulty fitting a specific area of the body into clothing, and difficulty donning and doffing rings, wristwatches, and bracelets (National Lymphedema Network, 2009b). In stage 1 of lymphedema development, the skin can hold an indentation from light pressure, called skin pitting, and in stage 2 the affected tissue bounces back in response to pressure. In stage 3 an individual has lymphostatic elephantitis, an irreversible swelling of the limb(s), which marks the beginning stages of tissue fibrosis. The constant accumulation of protein-rich fluid leaves the skin susceptible to infection, skin breakdown, and limb immobility and dysfunction. In the most severe cases, lymphangiosarcoma or lymphatic cancer can develop. Cancer-related and non-cancer related secondary lymphedema. This array of symptoms can greatly affect individuals recovering from cancer treatment. According to Hayes, Reul-Hirche, and Turner (2009), BCRL is a constant reminder of the cancer and its debilitating nature, making it difficult to recover mentally and physically. Experiences of those with lymphedema of the groin and lower extremity secondary to gynecologic cancer have received less attention, but these conditions appear also to impair mobility and can lead to social isolation (Lockwood-Rayermann, 2007). Furthermore, painful lymphedema causes distress and fear of cancer recurrence greater than that in people without lymphedema (Cohen, Payne, & Tunkel, 2001). Although an increasing number of individuals are living beyond cancer treatment, there Giles – Adherence to Exercise in Phase 2 CDT 9 remain detrimental physiological side effects and psychological morbidities (Fialka-Moser, Crevenna, Korpan, & Quittan, 2003). Although cancer treatment is the most common cause of secondary lymphedema, noncancer related lymphedema is prevalent and has not received as much research attention. Noncancer related secondary lymphedema may be attributed to any one of the following: surgery, trauma, or infection (Bogan et al., 2007). This population is unique in that they typically experience a later diagnosis, more severe swelling, and edema in the bilateral lower extremities (Bogan et al., 2007). All the previously stated characteristics lead to difficulties in lymphedema management. Lymphedema treatment. Although there is no cure for lymphedema, the National Lymphedema Network and the International Society of Lymphology affirm that CDT phases 1 and 2 are integral to ameliorating the symptoms (National Lymphedema Network, 2009b; Weiss & Spray, 2002). Upon physician referral to a lymphedema clinic, an individual can undergo this form of treatment with a Certified Lymphedema Therapist. CDT includes manual lymphatic drainage (MLD), compression bandaging, vasopneumatic compression, patient education about skin care and precautions, compression garment fitting, and remedial exercise (Pierson et al., 2008). The primary goals of this method are to decrease edema, increase lymph drainage from the congested areas, reduce subdermal fibrosis, improve skin condition, enhance the patient’s functional status, and enable the patient to adhere to an independent self-care program (National Lymphedema Network, 2009b). The frequency and duration of treatment depends upon the clinic and severity of the lymphedema. CDT phase 1 can vary from 13 times per week for 4 6 weeks or more, to once or twice per day for 2 4 weeks or more (Cohen et al., 2001). Following Giles – Adherence to Exercise in Phase 2 CDT 10 reduction in fluid build-up, fitting for a compression garment, and client demonstration of knowledge in symptom maintenance, he or she is discharged to phase 2 of CDT. The second phase of CDT involves the same principles and goals of phase 1 except that it is initiated at home by the patient himself or herself. Adherence to a life-long treatment plan is vital to reducing and controlling the symptoms of lymphedema. A lack of adherence to selfmanagement can result in repeated infections, cellulitis, lymphangitis, and non-healing ulcers in addition to functional immobility such as restricted joint range of motion (Pierson et al., 2008). Despite the severe effects of not following through with the treatment plan, many find it difficult to manage the symptoms on their own (Bogan et al., 2007; Johnstone, Hawkins, & Hood, 2006). Individuals who participate in CDT phase 1 experience a reduction in the girth and volume of the affected body part, but return to baseline within 12 months after discharge without proper follow through during CDT phase 2 (Johnstone et al., 2006). Thus the benefits from CDT diminish when patients become responsible for their own care despite the reported satisfaction with CDT phase 1. The lack of adherence has been attributed to time demands, lack of social support, and depression (Bogan et al., 2007). Lymphedema and daily occupations. A lack of follow through with CDT phase 2 can limit the likelihood of living an independent and active lifestyle. In a study that explored arm and hand swelling in response to breast cancer treatment, 69% of participants found the swelling to interfere with daily activities (Oliveri et al., 2008). In a 12-month follow up study of individuals recovering from breast cancer treatment with upper limb edema, lifting, carrying, and reaching were listed as impaired functions by the participants (Karki, Anttila, Tasmuth, & Rautakorpi, 2005). Functional impairments amongst those specifically with lymphedema appear to cause individuals to give up leisure and recreational activities and experience greater restrictions at Giles – Adherence to Exercise in Phase 2 CDT 11 work (Holtgrefe, 2006; Karki et al., 2009; Miedema et al., 2008). This is unfortunate since research supports the idea that an active lifestyle enables an increase in functional capacity and quality of life (QoL) in patients with lymphedema (McClure et al., 2010; National Lymphedema Network, 2009a). The importance and controversy of exercise. Exercise is an integral, but often forgotten or feared aspect of daily lymphedema management. According to the National Lymphedema Network, exercise is not only important to living a healthy lifestyle, but also in promoting, through muscle contractions, proper lymph flow and protein reabsorption (National Lymphedema Network, 2009a). Furthermore, the National Lymphedema Network affirms that a majority of those with lymphedema can safely engage in aerobic, resistive, and stretching exercises, thereby increasing range of motion and flexibility (National Lymphedema Network, 2009a). The National Lymphedema Network not only promotes exercise, but also the clinician’s and client’s careful monitoring of the exacerbation of symptoms. It is recommended that whatever exercise is initiated, compression garments should be worn, the affected body part should not be worked to fatigue, and the exercise should be low in intensity and gradually increased (National Lymphedema Network, 2009a). These precautions and previous contradictory studies have left patients with lymphedema uneasy about engaging in exercise. Until 2008, the National Lymphedema Network had advised women with BCRL not to engage in strenuous activity, such as lifting heavy objects (Lee, Kilbreath, Sullivan, Refshauge, & Beith, 2010). Women have continued to protect their arm from strenuous activity out of fear of worsening lymphedema symptoms or contracting lymphedema (Lee, Kilbreath, Sullivan, Refshauge, & Beith, 2007). However, current research supports the use of the affected body part in gradually increased strenuous exercise and debunks the belief that it Giles – Adherence to Exercise in Phase 2 CDT 12 exacerbates the symptoms (Hayes et al., 2009; Karki et al., 2009; Lee et al., 2007). According to Katz et al. (2010), individuals with cancer-related, lower extremity lymphedema can also engage in an exercise program without a worsening of symptoms, and may thereby experience significant improvements in functional status. Therapeutic exercise programs. Specific exercise programs have been shown to improve symptoms of BCRL. McClure developed “The Circle of Healing” program where participants engaged in a 17 minute long, video-led exercise of low-to-moderate intensity that included muscle-shortening, gravity-resistive arm flexibility exercises, proximal to distal sequence of movements, deep diaphragmatic breathing, and imagery of nature with flowing water and background music (McClure et al., 2010). Participants attended 1-hour sessions, 2 times per week for 5 consecutive weeks followed by a 3-month continuation of the program in the home. Compared to the control group, the participants displayed good adherence to the program and improved arm flexibility, QoL, mood at 3 months, and weight loss (McClure et al., 2010). Although the study supports the use of an exercise program, the population was limited to those with BCRL and the results cannot be generalized to all cancer-related and non-cancer related cases. Although few in number, studies on exercise programs for those with secondary lymphedema of the lower extremity support the positive effect of exercise in CDT phase 2. An exercise program used with individuals diagnosed with secondary lymphedema of the lower extremity involved the following: stretching, diaphragmatic breathing, and weight training (Katz et al., 2010). During the second, unsupervised phase of exercise at the local YMCA, adherence to the program varied (Katz et al., 2010). One of the reasons for this change in adherence was the inconvenient location of the YMCA. According to Katz et al. (2010), involvement in a clinicGiles – Adherence to Exercise in Phase 2 CDT 13 based, supervised exercise program did not lower edema volume, but did significantly improve balance, dorsiflexion of the affected ankle, and distance walked in 6 minutes. Although this study had a small sample (N = 10) and did not show a significant improvement in symptoms of lymphedema, it did facilitate discussion of the factors influencing adherence to exercise. The previous studies support the use of exercise programs in treating secondary lymphedema. Despite the fact that physical symptoms did not consistently improve in response to routine exercise, they were also not exacerbated. Higher scores on QoL were noted and adherence to exercise appeared strong. There is a lack of research on individuals in CDT phase 2 with secondary lymphedema and the positive effects of their adherence to an exercise routine or program on daily activities. Furthermore, the question remains as to the predictive factors of client follow through with exercise in CDT phase 2. Therefore, the purpose of this study was to obtain descriptive information on exercise by individuals with secondary lymphedema, as well as to explore the possible associations between client and clinical discharge factors and adherence to a prescribed exercise routine in phase 2 of CDT.