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Evidence based risk reduction recommendations for people at risk or with breast cancer-related lymphedema

The Pathways Editorial Board is pleased to promote recently published research from the LANA Summit along various themes. This is the first of a series of interviews with some of the authors who were involved, discussing the process, but more importantly, soliciting their ideas of how to translate this new knowledge into clinical practice.

A transcribed interview by Anna Kennedy with two of the authors (Julie Hunley and Cheryl Brunelle) of the corresponding papers (Bottom of page 18). Research methodology

AK - What was the decision process for the research methodology used both for the research paper and consensus statement for this new set of recommendations? How did the team choose which areas to include, because so many were not included?

The team consulted the available evidence and the American Cancer Society and determined that a systematic evidence map methodology would meet the study purpose of determining whether current evidence supported or refuted breast cancer-related

lymphedema precautions for women at risk for developing or with lymphedema. We anticipated that there would be gaps in the evidence, so believed that evidence mapping techniques would illustrate risks for each group (at risk or with breast cancer-related lymphedema).

We needed to develop a search strategy that captured evidence related to risks included on the prior precaution list. Some areas were more challenging than others but we’re satisfied that we captured all of the relevant literature to inform the new risk reduction guidelines.

CB - Our group was very meticulous about only including recommendations for which there was an evidence base If there was no evidence base and the recommendation would really be as a result of consensus opinion only, we did not include it. If we felt the evidence base was sufficient enough to support a recommendation, then we did There were a lot of different topics within risk reduction that could be addressed, as in the traditional and lengthy “dos and don’ts” list. We had to go into the literature and determine how to categorize those items in ways that we could meaningfully search databases and find evidence related to them

Anna Kennedyis Editor-in-Chief of

Cheryl Brunelle PT, MS, CCS, CLT is an APTA Board Certified clinical specialist in physical therapy and the associate director of the Massachusetts General Hospital Breast Cancer-Related Lymphedema Research Program

Julie H. Hunley PhD, OT is Professor of Occupational Therapy at Mount Mary University. She also sits on the LANA Board of Directors and is Chairperson of the Research and Publications Committee magazine and a Founding Member of the Canadian Lymphedema Framework

Pathways

AK - Why are there different tips for people with lymphedema and those at-risk?

CB -

The entire panel felt this was a very important distinction that we needed to make clearly, both in the recommendations and also in the pocket card Because clinically, these are two very different populations as the evidence base is different. For example, something like blood pressure or injections in an arm at risk of lymphedema – that’s been studied; we have good data to understand what risk, if any, blood pressure measurements and injections impart in a woman at risk. We do NOT have any studies that look at what risk is imparted by blood pressure or injections in an arm WITH lymphedema So, the recommendation for women with lymphedema would be to avoid these behaviours, simply because we can’t say whether or not there is a risk for those behaviours If we had evidence, then we would make the recommendations differently If the recommendations are the same (for both

those at risk and those with lymphedema) –it’s because the evidence is the same

AK - I can anticipate people reacting to the BCRL risk reduction recommendations and assuming they can be translated to any type of lymphedema What is your concern with that?

CB -

Most, close to all of the research done in this area, is lymphedema related to breast cancer, rather than lymphedema in other etiologies We simply didn’t have enough evidence outside of BCRL to make conclusions outside of this scope.

Pocket card of recommendations

AK - The pocket card addresses several audiences (Figure 1). The wording isn’t so clinical that a patient can’t understand, and I don’t think health professionals would be offended. We spent hours as a committee going over what the

words should say, what they should mean and who they’re directed to It is appropriate for an organization to adopt and put it on their website as patient education material.

CB -

Originally I felt the card would be best geared to patients and lymphedema therapists. It’s a set of recommendations summarized into a readable and practical, concise pocket card Clinicians can put the card in their lab coats, and anyone can access the card electronically through the QR code But also, for doctors, the card is a succinct part of the publication, as we spent a lot of time to ensure consistency with the larger publication If doctors really want to see the evidence they can go online to read the full publication

Although the card is fine for a patient to pick up and understand, ideally, a further step would be for it to go through a patient focus group – to make sure it’s truly readable for patients

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JH - The card hits the middle of the road in terms of audience. Patients have the capacity to read, at a more detailed level than maybe what we gave them credit for, 20 or 30 years ago A big change is that people are expecting to drive their own healthcare instead of being passive patients. Advocacy for their own unique set of risk factors is possible for a lot of people

into clinical practice

AK - What are your suggestions in translating the published documents into clinical practice?

CB -

There has been a lot of misinformation historically, which will continue to perpetuate until we disseminate this new information as widely as we can Opportunities like this article in Pathways, public marketing and encourag- ing as many people as possible to read the full publication. We need to present the work at conferences with lymphedema therapists and encourage lymphedema organizations to

Translation

promote the recommendations. We need to focus on getting this new knowledge out to oncologists and to primary care physicians/ GPs because they see these individuals with some frequency and can also introduce and reiterate this education.

I think we can only translate this into clinical practice if the other organizations that also need to update guidelines do so and align with these recommendations. We can’t afford to misalign. We can no longer sit with the status quo and leave things that we know to be incorrect

AK - How can we help organizations align their patient education with this new research and body of evidence?

JH -

I believe that’s a big challenge. I started doing this work in the mid 1990s when we were just fighting to get medical professionals to take ordinary caution with patients who would be at risk or already have lymphedema I don’t think that all of that was bad For example, being cautious during medical procedures and rehabilitation was based on the best application of limited evidence and sound clinical reasoning. Current evidence suggests that we can be more nuanced with precautionary guidance It took so long for those alert bracelets to come out and for warnings to be posted about blood pressure measurements and blood draws. So how do we now make that transition and say, “it depends” Some healthcare workers are very procedurally trained and may or may not review the chart for patient-specific risk factors. So, I suspect that change will come slowly, and I would imagine it’s going to be by treatment, and by treatment group That’s why your help in disseminating these articles is so important.

AK - The corporate world is not that much different in some ways than the medical community. At American Express, my team’s responsibility was training 6,000 travel agents across Canada. They had

been trained in certain methods that were tried and true for many years. By tweaking our approach, would we get better training result and increased productivity and sales results? Trying to change one or two procedures and have that accepted and adopted by all the employees in the field was quite a challenge and a very slow process

I don’t think that this is going to be a whole lot different. I do think it will be an organic process just like it was before. With evidencebased practice, the evidence has a life of its own It will grow and flourish in some areas Using a plant metaphor: clipping back a plant so that the strongest parts keep on growing. I think that in some hospital systems or some clinics, they’re going to say, no, we’re going to stick with these, and so it’s not going to grow there There’s going to be other more progressive places, places that have practices probably more based in evidence, like the larger teaching hospitals. I suspect in this case it’s going to be a little bit like that plant metaphor

CB - We need to help your readers understand that there was tremendous due process taken coming up with these recommendations. You can’t have more due process that we LANA did This effort represents a multi-year process in which invited experts were brought together that included an exhaustive review of the literature. There were patients, clinicians, researchers, academics and all types of stakeholders in the room An exhaustive review of the literature, collaboration with post it notes on those walls where we suggested and analyzed with careful consideration of each word in each sentence until we were happy with the document It was really like a Delphi process The Summit was followed by many meetings to write the paper and review and rewrite before submittal for publication.

JH - I agree with Cheryl. This project was much more than just a 2.5-day Summit. For our literature review paper, Betsy, David and

I worked consistently for over a year – taking longer than any other paper I’ve been part of. It was surely a significant effort

As we’re approaching patient education, we don’t have a common day-to-day language or knowledge about lymphedema and the risk factors Therefore, the need for explicit training is greater Prospective monitoring is also essential, even though we didn’t include that in our mapping review. However, I’m really glad that it made it onto the editorial as well as onto the other paper Whether we’re talking about lymphedema or any number of other health risk factors, there’s 1) a segment of the population that is capable and well aware of trying to control their risk; 2) there are other people who have very little awareness, and 3) there are some people who have awareness and are making a choice that they just don’t want to actively work towards reducing their risk We shouldn’t pass judgment about that They learn themselves about consequences

AK - And we have to respect that choice. But we do need to encourage all organizations to align their information with the new evidence-based recommendations so that people can make informed choices

Editor’s Note:

We encourage our readers (both health professionals and patients) to read beyond the abstracts by clicking on the links and reading the entire research papers and consensus documents below

The team at the Massachusetts General Hospital (Boston, MA) has adapted and formatted the original pocket card for use in their clinical practice (Pictured on page 15) With their permission, we are distributing them online among our Pathways readers

Research Paper: Current Evidence on Patient Precautions for Reducing Breast Cancer-Related Lymphedema Manifestation and Progression Risks https://rdcu.be/d97io Julie Hunley · David Doubblestein · Elizabeth Campione

Consensus Statement: Evidence-based recommendations regarding risk reduction practices for people at risk of or with breast cancer-related lymphedema: consensus from an expert panel https://rdcu.be/d97iy Cheryl L. Brunelle Katherine Jackson Shirin M.Shallwani Julie H. Hunley Anna Kennedy · Sarah Fench · Alendra Hill · Electra D Paskett · Katrina Rush · Saskia R J Thiadens · Joan White · Paula Stewart

JH -