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One of the most marked changes in the life of the lymphedema patient is adjusting to daily involvement in the maintenance phase of treatment and the critical commitment to ongoing compliance. It is a lifelong commitment and very intense. As a consequence, the patient must understand every aspect of their treatment, the rationale behind each component of treatment, anticipated outcomes of treatment, signs to look for which may indicate impending problems and how to respond, and under which circumstances they should contact their health care professional.

At the same time, it is also very important for the various health care professionals involved, such as the lymphologist and physical therapist, to take the time and patience to explain carefully all the parameters involved in self-care for the individual with lymphedema. In addition to discussion, they should provide the patient with written information and instructions that can be studied at home, such as lists of items to be checked for proper skin care by the patient and any other family members, friends, or caregivers who may be involved. They should demonstrate how to use any and all equipment, how to put on and remove the compression garments, and any other pertinent information. It is helpful for healthcare professionals to set short-term as well as long-term goals so that the patient can be motivated to continue with the task of self-management.

The psychological impact of lymphedema is enormous as the patient deals with skin changes, shape changes, and disability that can occur with lymphedema and can result in social isolation. The family of the patient must also adjust to a different image of a loved one. For cancer patients, there is the added fear that lymphedema is connected to recurrence of cancer since the swelling may first appear 10-20 years following surgery. It is important for patients to come to terms with living with a chronic condition that requires meticulous daily care in order to control it. The commitment factor to self help is essential.

A strong social and family support network is an important factor in helping patients with lymphedema better cope with the psychosocial aspects of the condition. For patients who cannot overcome the psychological burden of dealing with their condition, psychological intervention may be necessary. This may consist of psychological counseling, individual or group psychotherapy, cognitive behavior therapy (biofeedback), and anti-anxiety or antidepressant medications.

Patients should also be encouraged to join a lymphedema support group where they can obtain educational materials, keep up with the latest developments in lymphedema research, and share their experiences with others who are coping with the same condition. The National Lymphedema Network (www.lymphnet.org) has extensive information on ways to improve quality of life and find local resources. It is also important for the patient to purchase a special lymphedema-alert necklace or bracelet to alert healthcare professionals about their condition and avoid procedures that may cause complications.

Since patients with lymphedema may have other physical disabilities or limited dexterity due to advanced age or coexisting illness, it is important for caregivers to be included in the treatment plan and to be well informed about: