My Treatment Approach: Chronic Lymphocytic Leukemia - Episode 7

Educating Patients About Novel Targeted Therapies for CLL

The importance of multidisciplinary care in chronic lymphocytic leukemia and proper patient education on adverse events associated with novel targeted therapies.

Anthony Mato, MD, MSCE: Finally, I want to talk about patient education. We have a whole team, not just a doctor or nurse practitioner, but we have nurses, pharmacists, research team, a lot of different people providing educational support to patients. Can you just kind of comment on how our team works when a patient calls with a symptom and then what are some of the approaches that we use to follow up after we’ve given patient advice or try to mitigate a symptom with one of the interventions that you discussed?

Kristen Battiato, AGNP-C: Yes. Usually when a patient calls with a symptom, we’ll have our office practice nurse or research nurse reach out to the patient and get a detailed assessment and then we’ll make our recommendations as a team. And usually what we do is if the patient is holding drug, we’ll have close follow up with the patient. If needed, we can even bring them into clinic if symptoms are severe enough. We can usually manage a lot of the symptoms over the phone. We also utilize our portal system. If patients have a rash or where they can send us a picture, that’s also very, very helpful. And we can kind of get a sense if we need to make a dermatology referral or something or access our other colleagues that we work with as well.

Anthony Mato, MD, MSCE: Yes, truly a multidisciplinary approach. Sometimes, we’re able to do it over the phone. Sometimes we bring patients in. I think rarely we have to bring patients into the hospital when they have a drug-associated toxicity. I think having a team that understands these events well, we’re able to pretty successfully determine where somebody needs to be, but I think the most important thing is educating patients about the potential side effects because if they’re not calling us and letting us know they might be going to their primary who’s not aware of these sorts of things, things can be delayed. I’ve seen patients on PI3K inhibitors have diarrhea for days or even longer without anyone recognizing that it was drug-induced colitis, for example. Thus, patient education by far and away is probably the most important thing. Finally, just let’s comment just briefly on costs just to keep everything as balanced as we can possibly be. These medications are expensive across the board. Any challenges or issues you’ve come across in practice associated with costs and patients not being able to afford these drugs, or how do we deal with that?

Kristen Battiato, AGNP-C: Yes, these drugs can be very, very expensive. What we do usually is we’ll refer them to our financial assistance department where they’ll have access to some grants and financial assistance. Also, the pharmaceutical companies have some programs too to help with financial assistance as well. We’ll often refer patients back to them through programs to help offset the cost of the copay monthly.

Anthony Mato, MD, MSCE: Well, I want to make a couple closing remarks. We’ve all lived for the last almost 2 years through a pandemic where patients with CLL [chronic lymphocytic leukemia] have been in particular risk. Fortunately, where there is a light maybe at the end of the tunnel for patients based on vaccines and based on the development of novel therapeutics and so our interactions are becoming more and more back to the way they were before the pandemic. Certainly, we provide tremendous counseling and education. But from the perspective of choosing therapies, I think we’re finally back to the point where we’re picking what we think is the best therapy for patients and not so much letting the pandemic and this virus really influence our choices thankfully. We do use telemedicine much more liberally now than we ever did years ago in order to mitigate risk for patients. But I think we’re heading back to a time where our focus is best management of CLL above all else. I want to thank the audience for listening. Kristen, I want to thank you for having this conversation with me and we’re looking forward to more of these in the future. We’re heading into the ASH [American Society of Hematology] meeting and so they’ll be totally new data, exciting changes to the standard of care. We might have to have this conversation again as new therapies become available. Thanks so much everybody and stay well.

Transcript edited for clarity.