A recent article, entitled National Survey of Lymphedema Therapists’ Dosing of Complete Decongestive Therapy (CDT) in Breast Cancer Survivors with Lymphedema by Katie Polo et al, reported on the frequency with which PTs, OTs, PTAs and OTAs trained in lymphedema therapy treat patients during Phase 1 of CDT. The average number of patient visits per week was determined to be 3.71. However, this number (3.71) does not reflect my personal experience. I frequently hear from practicing lymphedema-trained therapists who say they are pressured by their employer to treat their patients only twice per week, on average, during Phase 1 CDT. One thing is clear, twice per week treatment during phase 1 CDT will not yield the same good results as 5 treatments/week for a minimum of 2 weeks, decreasing in frequency to 3x/week, until the patient is ready to receive their custom compression garment(s). Please share your own experience with us in the comment section below.
Hi Guenter….so I have a lot of CHF (treatment managed) I have concerns about treating them 5 times a week. What are you thoughts?
Thank you for your question. If they are well managed with their CHF, it should not be a problem to treat them daily.
I’m very happy to hear that dosage of CDT is being researched since as CLT’s we are limited by insurance policies. Hopefully this type of research can serve as evidence to insurance companies about the need of CDT and the amount of visits.
I have a lot of patients that only have 10 visits of CDT per life time. What would you recommend to do in my case?
This is a tough one. Treating any chronic disease with 10 treatments per lifetime is impossible and very unfair to the patients. If this is concerning a patient who hasn’t received CDT before, I’d still schedule these visits as close together as possible to get the most optimal results. Have you looked into the possibility of referring your patients to an MLD-certified massage therapist for maintenance work? It’ll take a little research on the patient’s part, but there are well trained massage therapists who can do the MLD work for a reasonable cost after the initial intensive therapy. We maintain a list of CMLDTs who have gone through our MLD training.
In the case of patients whose insurance only covers 10 CDT visits per year, photos and good documentation could be used to appeal to the insurance company for more visits. Hopefully with enough appeals with supporting documentation, this limitation would be extended. Again, this is the beginning of some new evidence which could be used as a guideline for proper lymphedema treatment.
Thank you Jan. I appreciate your input!
it’s refreshing to be reminded how to do the right thing and how to follow the right protocol. we always aim for the ideal as close as we can amidst all the considerations in our practice settings. go guenter. more power to klose training.
Great! Thank you.
I totally agree that phase one has to be a more intensive treatment regimen. Not only is the overall result better but it also sets the stage for the client to make a commitment to follow through with a home treatment regimen. Compliance is a major issue. Cutting down the session frequency interferes with compliance. Often when the clients do not see results they give up. That is why it is important for the therapist to also make a commitment to see that the edema reduction is occurring and to encourage the client to get to the next phase of treatment. That cannot happen without intensive early training which includes self-massage and adequate bandaging technique.
I have been treating lymphedema for over 25 years and have a high degree of compliance and success with my clients because I have insisted on daily sessions for at least two weeks until I am satisfied that with reductions and client self care.
Thank you for your comments. I wholeheartedly agree!
I totally agree. 5xwk2wk then tapering to 2xwk is my preferred treatment frequency. There are challenges to this in my area. The first is patient distance from qualified therapists. Some of my patients have had to travel on hour or more to get treatment. 5xwk is not practical or even doable for them.
I understand that commuting distance can be a problem and that accommodations will have to be made for those who can’t do it. However, finding ways to overcome these short-term challenges will yield long-term benefits. Therapy requires a commitment on the part of both the patient and the therapist. Thank you for your comments.
Thank you for your clear reasoning in defence of CDT bandaging 5 days a week versus treatments that are more spread out. If I was undergoing CDT as a patient, I would want the shorter (shorter time span) length of treatment, and would maintain my motivation over that period better than a longer course of treatment. That being said, each case is different (as you highlighted). It would be nice if each client can have their program tailored to their needs, and that the clinic/therapists and health insurance schemes would be more flexible to accommodate the differences in best treatment approaches for the individual.
I agree with your comments. I think that the therapy should always be tailored to the patient’s needs. However, we can only stray so far from the program that has been proven to work before we sacrifice the effectiveness of the treatment.
thank you for your expert advice that considers the many factors especially considering the patient’s issues and outcomes over time.
Thank you Guenter. Very relevant info!
Thank you. Feel free to share the link.
Thank you so much for this timely vlog! As you know, I have a private practice focused solely on lymphedema therapy and the vast majority of my patients are those with lower extremity lymphedema as a comorbidity of various conditions (ie: heart, venous, diabetes, etc.) As a sole practitioner and due to my own health limitation, my practice is open 4 days a week. For Stage 2-3 lymphedema, I generally see patients 4x’s/wk for 3 weeks and then taper to 2-3x’s/week for another 2-3 weeks (this, of course, is individualized to each patient’s needs) and have had excellent success with my patients with this protocol. In some instances (and for more severe cases), I have seen patients 5x’s/week for the first week and then 4x’s/week for 2 weeks with tapering off thereafter. Thankfully, I have not been limited by third party payers in the number of visits ‘allowed’ but I make sure that my evaluations reflect the impact of lymphedema on my patient’s quality of life and participation in desired occupations (ie: standing long enough to make a healthy meal, safely walking within/outside the home, etc.) and that my progress notes reflect the improvement in those outcomes as a result of CDT. I will also take the time to talk with ins reps personally about the patient’s needs/progress in order to get more visits (yes, it’s a pain but worth it for my patient). I have had a couple of patients who have high copays and that would’ve limited their frequency of therapy but I am able to let them pay out their copays over time, even after Stage 1 CDT is completed (this is a win-win solution for them and me). I also serve patients in a relatively rural area (I live in Amarillo TX – the northern most ‘square’ part of Texas) and have patients commuting 1 to 1.5 hrs one way daily for their therapy and while initially some have balked at the idea of commuting 4x’s/week, I will ask them to commit to one week and if they do not see improvement that validates the commute, we would discuss other options…in all cases, they have seen/been pleased with the benefits and have continued the frequency (and commute) as recommended.
I hope this helps others and thank you again, Guenter! 🙂
Great feedback DeLana. You are offering great recommendations which a lot of therapists can learn from. Keep up the good work!!
Thanks! I perform ongoing MLD on a weekly and biweekly basis for my cash patients with really good effect. Yes, I provide them with pump, self- MLD training and other resources, but some clients fare best with coaching/MLD on an ongoing basis.
Thank you Kathleen. Patients with lymphedema should never be cut off from “maintenance” MLD. I appreciate your dedication and the service you provide for your patients. Keep up the good work!
I agree that 5 X week is ideal and preferable and leads to improved results and compliance. It is good to see that this is being studied and results are supporting this.
Unfortunately in my practice, in a private clinic in a blue collar town Ontario, Canada, for the majority of my patients, it is impossible. In fact, it is pretty much the same independent of the practice setting. Many have no coverage for therapy, government funded care for physiotherapy is very limited as well and there are no CLT’s in the government funded stream in town. Those who do have coverage from private plans may have as little as $300 per year or $20 per visit with or without added amounts for garments.
I know that I do not always get optimal results and I do depend more on teaching self-treatment than is ideal and leads to varied results. So thank you for this information, it will remind me to encourage the more ideal regimen, and set up a payment plan if necessary.
Thank you Celine for taking the time to comment! I appreciate your input and encourage you to do a lot of patient education. Many times, patients need to be educated on the correct treatment protocol for lymphedema. You may be surprised how many patients will be able to commit after they understand why treatments need to be given consecutively during Phase 1 of CDT. Please take a moment to read the other comments we received on this topic for some great suggestions.
I agree completely Guenter. We get the best results because we do 5x/wk for two weeks (at least) and then reduce as appropriate. I am so happy you sent out this PSA for the lymphedema community. I think cost beneficial and inexperience of therapists have led to less than standard of care treatment. Every patient we see must have an individualized treatment plan, there are sometimes obstacles out of our control but Phase 1 is so important to set the stage for good carry over and follow through. Insurance should not be one of these obstacles. We as a profession have to stand up for our patients’ rights and needs. Treating less is doing a disservice to our profession. When these patients go back to their PCP’s, they portray an image that the treatment doesn’t work. Thank you again.
Thank you Heather for your great feedback. I hope that many therapists will read your comments.
Hello definitely the results are better when the first weeks the frequency of therapy is higher. But we must also adapt to the realities of each patient and the coverage of their insurance. But to avoid distorting the treatment requires the collaboration of the patient and their families to not interrupt the therapies (self-draining)
Greetings from Perú .
Thank you Lourdes. Yes indeed there are limitations, but we need to be sure not to give into them too quickly and not without trying… I look forward to seeing you in Germany for the Advanced class where we’ll talk more about it.
Guenter, Thank you for your blog post/video in response to this article. While I agree with you on CDT dosing (clinically speaking), I’m wondering if you could point us to recent research that supports CDT dosing? Are there authors you can think of that have done recent controlled trials that we could cite when trying to obtain insurance coverage for our patients or are the texts you reference in the video the most recent evidence?
Thank you Jennie! You are raising a good point. There are numerous publications (article and books) that highlight CDT as the Standard of Care for patients with lymphedema. As to recent control trials about the effectiveness of CDT, this is a very difficult question to answer. Many attempts have been made to establish the evidence of CDT, however, they have great shortcomings. For example, some papers (trials) compare the efficacy of lymphedema treatment with and without MLD. The question is, what kind of MLD have the authors used? Was it effective MLD? What was the duration of their MLD? What was their criteria for patient selection? Have they had a washout period and repeated the intervention with the other group? And this is just one example.
You see, it is easy for anyone to ask for the scientific evidence but sometimes we need to settle for common sense protocols – at least until we have the scientific evidence. It is very difficult to do the scientific research in regard to the best practice in lymphedema. There are too many variables. I invite anyone who is asking for the empirical evidence that CDT works to conduct a study that will prove/disprove it. Such a study will most likely never be conducted because of the many barriers and would need to pass an IRB…
In the meantime, we need to do what is right for our patients and provide them with the best care possible.
Ten years ago (I am now retired) it was my experience that those of my patients who agreed to commit to a five days a week two week treatment protocol received the most benefit. It was challenging to present consideration of the protocol to patients mostly because of the cost (not covered by health care or private insurance in my jurisdiction) and because of the distance to travel to and from my clinic for some of my patients.
Thank you Linda. I appreciate your comment.
Dear Professor Klose,
Here in Brazil, 5x/week is not a reality. First, the insurances does not cover CDT.
We do have good results treating 2x/week, obviously the higher frequency higher results.
In addition we do not have custom made garments in here 🙁 , we must fit our patients in a S, M ou L garments.
Public healthy services only provides therapy once a week.
It is not easy having lymphedema in Brazil. 🙁
Thank you Jaqueline, for your Brazilian perspective. I know it is hard to perform proper CDT in the infrastructure you are given. I am sure you are doing your best under the circumstances. I hope that someday it’ll be easier for you to ask patients to come 5x/week for therapy during Phase 1 CDT, and be able to obtain custom compression garments. Greetings from the U.S. 🙂
I feel, we have a responsibility to not only provide our patients the best treatment, but also to educate them on their disease and the best treatment. Guenter is correct, if patients are educated they will make the best decision. Having 5x a week for shorter period of weeks will interfere less in their quality of life and will make for better compliance.
Thank you Guenter for doing this small video.
Thank you Heidi. Please help spreading the word. I appreciate your confirmation!
Thank you! I am a patient advocate and have wanted to see this kind of pro-active work to make sure patients are getting the best treatment from scientific evidence and not being at the mercy of what insurance will pay. I have been to the Foldi Clinic and would like to see our country have a similar program to take care of our patients in the U.S. I also advocate for the Lymphedema Treatment Act to get Medicare coverage for compression garments. It is better for everyone to have patients enter into the Medicare program with well-managed lymphedema, and your work also helps us build the case for comprehensive care over the lifetime of patients. I heard about your work when I was last in DC — thank you!
I have struggled to find a happy medium between what is best and what works for each person as an individual. I have landed on beginning treatment 3 times per week for most patients with the exception of severe cases where I insist on them coming 5 days per week for at least the first week. In addition to scheduling conflicts due to work, family and medical appointments, my patients also have financial limitations. Deductibles, co-payments/coinsurance can make coming even twice per week very expensive and that is before purchasing compression garments. Also, Medicare and many insurances have low visit caps for therapy, with lower extremity swelling being capped at 16 visits per year. I always educate my patients on the recommended 5 days per week and occasionally some can and want to but most say that it would be impossible for them.
Thank you for your question. We appreciate the struggle that lymphedema therapists have in providing the best care to patients, when there are so many obstacles in their way.
The two videos below, found on the Klose Training video page, address your question.
Program Growth through Standardization: Back to the Future
Linda Hodgkins, MS OTR/L, CLT-LANA
Effective CDT – The Inconvenient Truth
Guenter Klose, MLD/CDT, Certified Instructor, CLT-LANA
I wish I could treat them 3-5 times a week but for most it is 2 times a week and if they are really involved, 3 times a week. This is for many reasons, mostly not enough spots in my schedule, but also due to copayments/deductibles, transportation, etc. I do my best on the first couple of visits to teach them self MLD, decongestive exercises and skin care so they can perform those on the days they are not in the clinic. I know most individuals do not perform correctly or can’t reach as far as they should for the most beneficial treatment so I try to teach family members/caregivers as much as possible.