How Can You Engage in Your CLL Care?

How Can You Engage in Your CLL Care? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients become more engaged in their care? Dr. Paul Barr explains steps that patients can take to activate shared decision-making with their provider for optimal care.

Dr. Paul Barr is Professor of Hematology/Oncology at University of Rochester Medical Center. Learn more about Dr. Barr, here.

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Transcript:

Katherine:

We’ve been hearing a lot about shared decision-making lately. In your opinion, how is this concept best put into practice?

Dr. Barr:

So, I honestly think shared decision-making is not just useless term. This is something we actually really use in our clinics, and it’s very important for the care of CLL patients, where we have patients who do very well for a long period of time. And there are a lot of different management decisions and a variety of treatment options that we have to discuss.

So, when we have that luxury, it’s really important to help educate patients on the different options and to better understand what their goals of care are, so they can help us decide what’s best for them. When we’re deciding just, one example is that, when we’re deciding on various treatments, we can use agents that are given orally, taken at home, but patients may be on them for many years.

Alternatively, we have fixed duration regimens, but may involve trips to the infusion center. And a lot of these different treatments all work very well. So, involving the patient in that decision making process, makes the process that much easier for the patient and enables you just to take better care of them over the long run.

Katherine:

What is the role of the patient to making treatment decisions?

Dr. Barr:

Well, I think that the role of the patient is really to be their own advocate. Take all the information and then, help us make decisions together. And to just be very honest about what they want from, not just a simple decision about a treatment, but from their overall care. To really just to be as involved as possible and to make sure all of their concerns are heard, all of their questions are answered.

Katherine:

For those who might have trouble speaking up for themselves, what advice do you have for them?

Dr. Barr:

Oh, I would say, especially for our patients with CLL, often there are many,

many appointments along the way, where there may not be urgent decisions being made and there are opportunities to slowly learn more to ask questions. So, as much as possible, try not to be intimidated by that visit to the cancer center, which obviously can be anxiety provoking, but to develop a relationship with your hematologist, your oncologist, your care team so, that they can take better care of you.

I honestly think it works best when you slowly get to know your team, understand the field, some of the decisions that need to be made and that the team only wants what’s best for you. So, yeah, I honestly think it’s – think of it as a process. It’s not a one-time visit where you have to get everything out and get everything answered. It should be a relationship.

How Can CLL Patients Be Active in Their Care Decisions?

How Can CLL Patients Be Active in Their Care Decisions? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients take a more active role in their care decisions? Dr. Matthew Davids details considerations for CLL treatment and explains ways that patients can take action to ensure their patient voice is heard for their care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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Transcript:

Katherine:

Lately we’ve been hearing the term “shared decision-making,” which basically means that patients and clinicians collaborate to make healthcare decisions.

And it can help patients take a more active role in their care. What are your thoughts, Dr. Davids, on how best to make this process work?

Dr. Davids:

Yeah, I fully support that model. I think for most patients it’s very helpful to be an important decision-maker. Really the patient is the ultimate decision-maker to say what they want for their own treatment. And sometimes it’s hard for me to predict what a patient will want for themselves, so I see my role for most patients as providing the information that they need to make the best decision possible for themselves.

I do try to steer patients a bit in the directions that I think they should be thinking. I’m not going to necessarily present a laundry list of things to patients. I’m going to try to narrow it down to what I think are the most reasonable choices for a patient to make.

I feel that’s part of my job. I do still have patients who just say, “Just tell me what to do,” and I respect that, too. Not all patients want to be part of shared decision making, and they just want me to decide, and that’s fine. But I do find that most patients like the idea of having a voice and being the one to decide, and that way I can help to guide them, but ultimately, it’s up to them.

Katherine:

Well, speaking of patients having a voice, are there questions that patients should consider asking when they’re thinking about a proposed treatment plan?

Dr. Davids:

Yeah. I think some of the key ones revolve around basic stuff, but sometimes it’s hard to think of it in the moment. But thinking about, what are the risks of this therapy? What are the specific side effects that are most common? When you look at a package insert or you look at a clinical trial consent form, you’re going to see 100 different side effects listed. I always promise patients, “You won’t have every single side effect that’s listed here, but you may have a couple of them.” And again, my role often is to identify which are the more common side effects that we see and how can those be managed?

And then, I think often you’re just asking simply about what are the potential benefits of this therapy? What are the odds that I’m going to get into remission? How long is this remission likely to last?

And then, something that is often challenging for patients to think about – it can be challenging for me as well – is to think about what’s the next step? So, I think a good question to ask is, “If I choose Therapy A, what happens if I need therapy again in a few years? What are the options at that point?” because we’ve been talking so far mostly about what we call frontline therapy, making that initial choice of treatment. But then, once you get into what we call the relapse setting, a lot of the decision of what to receive at that point depends on what you got as the first therapy. And so, trying to think at least one step ahead as to what the next options are I think can be helpful, certainly for the physicians but also for the patients.

Katherine:

Do you have any advice to help patients speak up when they’re feeling like their voice isn’t being heard?

Dr. Davids:

That’s always a challenging situation, but I encourage patients not to be shy about asking questions.

There’s often an imbalance in terms of the information where the oncologist may know more than the patient about a particular condition. And so, I think reading up and trying to educate yourself as much as you can. Whenever possible, including a family member or friend as part of the visit to also help advocate for you. And then, if you’re not being heard the way that you think you should be, thinking about seeking out another provider who may be able to listen more.

And sometimes that can be again helpful to have a touchpoint with a CLL specialist who may be able to reinforce some of what you’re thinking. If what you’re reading online or seeing online is different from what your oncologist is telling you, that may be a sign that it’s good to get a second opinion and just make sure you’re on the right track.

Who Is on a Patient’s CLL Care Team?

Who Is on a CLL Patient’s Care Team? from Patient Empowerment Network on Vimeo.

Who are the members on a chronic lymphocytic leukemia (CLL) patient’s care team? Dr. Matthew Davids explains the members of the healthcare team – and shares advice for ensuring the patient receives complete information for optimal care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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Transcript:

Katherine:

When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?

Dr. Davids:

It’s definitely a multidisciplinary team.

Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There are pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.

That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.

Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.