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 lymphe