An Overview of Comprehensive Lymphedema Treatment

John Fuller Beckwith1/4/2024

Lymphedema is a serious disease. Whether it is mild or more severe, it can and does have a profound impact on the lives of persons living with it. The good news is that, while there is not a cure at present, lymphedema can be treated with a conservative approach that is very effective. The most effective treatment is Complete Decongestive Therapy (CDT). However, CDT is not always provided at the optimal level. For a clinician to be qualified to provide CDT, special training is required. But more, after receiving that training the clinician must also then deliver the care in a way that gives the best outcome to the patient. The purpose of this message is to help persons with lymphedema to be discriminating consumers of lymphedema treatment. It is inspired by the wisdom of Guenter Klose.

What is the Standard of Training for Certified Lymphedema Practitioners?

The National Lymphedema Network (NLN) and the Lymphology Association of North America (LANA) provide a good guide to the training standards for lymphedema therapists. In brief, the training coursework should consist of 135 hours, 1/3 of which is didactic instruction, or theory, and 2/3 practical instruction; in addition, there are baseline criteria for the content which must be included in both the theory and practical instruction. When a therapist completes this training they have earned the CLT (Certified Lymphedema Therapist) designation. (Mere mentoring is not the same as distinct classroom training so be careful of training that includes mentoring as part of the instructional hours). This is considered a minimum level of training in order to start treating lymphedema patients. A patient should feel free to ask and determine the training school of the treating therapist. There are some training programs that do not meet this minimal level of training, yet they may still refer to graduates as CLTs or a similar title. This can create some confusion. LANA is an additional certification which was originally created to address this confusion and to establish an easy way for patients, providors or insurance companies to determine if a therapist was adequately prepared to effectively and safely treat persons with lymphedema. So look for the LANA designation. Recently the LANA certification became a nationally accredited credential, meaning it stands separate and above all other certifications for lymphedema specialists, indicating a commitment to the highest level of lymphedema treatment. (It should be said there are many qualified and experienced CLTs whose training meets the LANA standard but who have chosen not to get the LANA certification. These therapists may provide excellent care as well, so the LANA certification is helpful but not necessary in order to indicate a qualified lymphedema specialist.)

What are the Hallmarks of Good Lymphedema Treatment?

Complete Decongestive Therapy: The foundation of effective treatment for lymphedema is CDT. CDT is divided into two phases of treatment and each phase has the same four basic elements. The four elements are: Compression (bandage or garment), Manual Lymphatic Drainage (MLD), meticulous skin and nail care, and remedial exercise. These four elements are present in both the first (intensive) phase of treatment and the second (self-care or optimization) phase of treatment. In the first phase, also referred to as the decongestion phase, the goal is to decongest (or reduce) the swelling and fibrosis that are the key signs of lymphedema. In this first phase the trained therapist applies the treatment intensively in a skilled manner, meaning the therapist is the one to perform the MLD and apply the compression bandage. In this way the CLT leverages all their expertise and experience in order to obtain the most effective decongestion. Also, during this phase the therapist is continually teaching the patient about lymphedema management in preparation for the second, self-care phase. During the second (or maintenance/ optimization) phase, the patient manages the disease by applying the same four elements as taught by the CLT, just less intensively. Put succinctly, in phase one the CLT decongests and in phase two the patient maintains. There is a distinct difference between the two phases in the level of care, who does the care in each phase and the goal of each phase.

Dosing of Treatment: It is fair to think of the application of CDT like the dosing of a medication – how frequently do I receive it, how strong is each dose, what is the maintenance dose I need to keep it under control? The interventions that make up CDT are the daily ‘medications’ you take in order to reduce and keep lymphedema under control. Keeping that in mind, below is a discussion on the dosing of CDT.

Treatment Frequency: The standard of care in CDT is to receive treatment five days per week. This is a different paradigm than virtually all other physical or occupational therapy, yet sometimes lymphedema treatment is mistakenly scheduled like other types of PT/OT. However, lymphedema in need of decongestion is an acute form of the disease and it needs, and will benefit most from, daily intervention. Daily treatment allows for MLD to be applied more often, meaning the decongesting effects of MLD are applied every day, not just one or two times per week. Since lymphedema is stagnant, protein-rich, waste-filled fluid, when the CLT applies the full sequence of MLD, the most effective evacuation of not only fluid but also waste products and proteins occurs. MLD is unique in this regard, there is not another intervention that effectively supports the lymphatic function in this way. It is also understood that MLD when applied by the trained CLT is much more effective than when the patient performs self-MLD. Regarding compression, daily treatments also allow for daily reforming of the bandage to the steadily reducing swelling. This optimizes the benefits of the bandage. The bandage stays in more complete contact with the reducing limb and does not allow for refilling, which can occur if the bandage is not changed in a timely way.

Therapy treatments five days per week may seem like a lot, but whether daily or something less, lymphedema treatment is a commitment on the part of the patient. Therefore, as a patient you are making a commitment to therapy in either case. If treatment visits are one or two times per week, there is some progress made, but most often it is at the cost of some backsliding – two steps forward and one or more steps back. However, if treatments are daily, progress is more rapid, backsliding is controlled, goals are achieved much more quickly, there is less time wearing the bandage and the transition to the second phase occurs much sooner. Conversely, if sessions are infrequent, then a person is longer in therapy, months in many cases. As the course of therapy stretches out over time, the number of visits increases. When therapy is daily, the total number of visits is actually less, in addition to the course of therapy not lasting as long. If the lymphedema is not too severe, in most cases it can be completed in 2-4 weeks. Less visits overall means the total cost of therapy is less. Therefore, proper dosing of visits ultimately yields lower costs and less time in therapy.

When Might Treatment Frequency Be Less?

Even though daily dosing of CDT is the standard recommendation, there are patient-related factors that may cause the frequency of visits to be less. Such factors might be: concomitant medical conditions, transportation issues, distance to travel to therapy, financial constraints, limited caregiving assistance, patient choice. (Patient-related factors should be distinguished from factors beyond the patient’s control, such as clinic policy or therapist’s choice.) When visit frequency is less for patient-related reasons, it is understood the recommended dosage is daily but a lesser dosage may be better than no treatment at all. In this case the goal of treatment is to provide as much benefit as possible.

What is Included in Each Visit?

Clinic visits occur during the first, decongestion phase of CDT. The therapist is applying the primary interventions in this phase. That means the therapist does the full MLD sequence, the therapist constructs, assesses and modifies the skilled short-stretch compression bandage, and skin care is guided or performed by the therapist with skin assessment and modifications as needed each visit. Remedial exercises for lymphedema should be done daily, however after initial instruction, these can be done by the patient outside of the clinic. If during the first/decongestion phase of CDT a patient is instructed to perform the MLD on themselves and/or to apply the short- stretch bandage themselves, this is not only diluting the dosage of the intervention, it effectively skips over the necessary first phase of CDT and goes straight to the second, maintenance phase of CDT. In these cases, while some improvements may be seen, the most effective decongestion of lymphedema can not occur and the patient is not receiving the full benefits of treatment. CDT is by definition two distinct and complete phases. In order for the patient to receive the full benefits of this comprehensive treatment the first phase should be applied by the CLT.

How Long Should Each Treatment Visit Last?

The CDT standard is generally 1-2 hours for each treatment visit. Again, this is different than the more common physical therapy or rehab visit. Each treatment should include each of the four elements of CDT. MLD should be done each visit by the CLT, in order to get the beneficial effects that only MLD can provide. Each MLD session takes time, there is not a way to squeeze more ‘efficiency’ out of the intervention by doing it quicker or skipping over steps. Diluting MLD is basically decreasing the ‘dose’ of the intervention. As regards the compression bandage, a gold-standard lymphedema bandage is a complex, customized construction with a number of important parts, therefore it takes time and focus on the part of the therapist. The bandage should not be a generic, quick application. The variance between one to two hours is determined by the severity of the lymphedema, including the stage, the extent of lymphedema on the body part, the number of body parts and, as in many cases, the presence of skin ulcers that need to be addressed. When treatment visits are shorter than one hour, something has to be omitted or diluted and therefore the dose of the intervention is lessened.

Bandage or Garment during Intensive Phase?

The skilled lymphedema short-stretch compression bandage is the gold standard for compression for lymphedema. It is the most effective intervention for reduction of not only the water content of lymphedema but also the fibrosis. It effectively softens and reduces even very advanced-stage lymphedema. To substitute for the bandage an elastic compression garment (stocking or sleeve) or a Velcro-closure compression garment is to dilute and limit the benefits of the intervention. Optimal reduction will not be achieved. Garments are holding/containing devices, at their best, but they are not reducing devices. The bandage is the best reducing device during the first, intensive phase.

In summary, CDT is by definition comprehensive. To lessen the dosage by: lessening the frequency, or having the patient apply MLD and/or the compression bandage themselves during the first phase of CDT, or using compression garments instead of the compression bandage, or shortening treatment visits – is not comprehensive and is a diluted intervention. Persons with lymphedema deserve the best treatment and best outcomes. As the saying goes: Just okay is not okay. The manner in which the therapy is applied will make a difference in outcomes. It is understood that persons seeking treatment for lymphedema, as with all health care, have the option to choose a lesser level of care, given that all options are made available to them. But it should be their choice and not a default option. We encourage persons with lymphedema to take 30 minutes to view a seminal video presentation by Guenter Klose, ‘Effective CDT – The Inconvenient Truth.’ It may be accessed on the LE&RN website or on the Klose Training website.