Best Practices for Patient Education Surrounding Cancer Treatment

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Transcript:

Benjamin P. Levy, MD: Michal, how do you come into play with patient education, around the testing and the hurdles? Are you talking to patients and saying, “Look, don’t worry, this is what we’re going to do”? What are the major hurdles that you see at MSK [Memorial Sloan Kettering Cancer Center in New York, New York] sometimes? And how are you overcoming those? What does your communication look like with the patient?

Michal F. Segal, RN: If you’re going to go on a trial specifically, everything is going to take longer. I deal with all the trial patients and just keep them in the loop and tell them what we plan to start in 2 or 3 weeks. That’s normal. A lot of patients get fearful and feel they need to start treatment immediately. So it’s just education to bear with us and to kind of let things percolate. Things take time. The biggest hoop, I think, and what most of you are saying, is communication, putting in orders and following up, making sure that they’re done because sometimes pathology doesn’t see the right order or they’ll do their standard testing. In terms of patient education, it’s just letting them know that we are working on stuff on the back end and that there is other stuff that they need besides pathology. Typically, they need a mediport, a CAT [computed axial tomography] scan, an EKG [electrocardiogram], and bloodwork. There are other things to fill the time, and really it’s just asking them to trust us and to be patient.

Benjamin P. Levy, MD: I’m going to lean on Rasheda here because I know she’s intimately involved in some of the patient education. Just briefly, Rasheda, what is your conversation like with a patient who comes in? What is a barrier that we face, and how do you have that conversation? Sometimes I put you in an unfavorable role of talking to the patient. How do you tell them why we’re still waiting for things and how do you talk to them?

Rasheda Persinger, MSN, AGNP-C, AOCNP: I think there are 2 parts there. The first part is how to ease that patient, more so in the advanced and metastatic patient than the adjuvant, as it relates to why we need this complete biomarker profile before we proceed with treatment. I alluded to it a little bit earlier in my first response, that it is so important to constantly educate that patient and make sure that they understand what the reasoning is, having that open communication [even if] they ask you the same questions 3 or 4 times. Even if you are busy, you have to have that open communication because you are setting the field in terms of what they have and when they want treatment and how they are to notify you of different AEs [adverse events] and so forth. I think that’s the first part in terms of making sure they understand what this means, why we need to wait, why we cannot start or should not start unless they are symptomatic. I think Dr Levy and Dr Scott tend to proceed with chemotherapy without I-O [immune-oncology] if we don’t have the biomarker, if the patient is symptomatic.

Then the second part is once they are on a target agent or a targeted therapy, making sure that they understand the rationale behind it. What is the reasoning behind it? How do they need to do things? The barriers at that point are more so talking about oral targeted therapy approval, authorization, insurance companies, and if there is an out-of-pocket expense, especially for those targeted therapies. So some of those are the barriers that we face once a patient’s treatment has been identified, especially if it’s one of those oral targeted therapy, not so much with the intravenous ones, but it can be in terms of authorization or a delay in treatment, and explaining to patients why we have to delay treatment. I don’t know about you, but our infusion center is busting at the seams trying to get them in for a visit. It’s hard to explain to a patient that you wanted to get them here next week, that they have to wait for maybe a week and a half. So those are some of the barriers that we face after treatment options have been decided upon.

Benjamin P. Levy, MD: Yeah, it takes a village. I want to ask Kayla 1 quick question. Lung cancer not only wants to be like breast cancer in terms of reflexive testing, but lung cancer also wants to be like breast cancer in terms of advocacy and how much patients are really behind getting involved. How do you navigate this, Kayla? Do you connect patients to these advocacy groups? Are you a part of that? What type of information do you provide? I know told us that you share the pathology report, but what’s your role in navigating that journey for a patient in general?

Kayla Freeman, DNP, APRN, FNP-C: A lot of the things Rasheda mentioned, previously, but it’s really building that good rapport with your patient so that they feel comfortable talking to you about concerns or anything they have. A lot of our patients are actually involved in a lot of advocacy groups, and they’re even willing when they come into the office, they’re like, “Hey, pass my information along to other patients,” which, I think, is amazing. They’re experiencing some of the same things other patients are and having that firsthand experience. I think it’s great for patients to interact with each other. I think for me, it’s being a support system for our patients, not just from a treatment standpoint. A lot of these patients need emotional support when they’re coming in as well. So, that’s how I try to advocate for them, but they’re also advocating for themselves, so I think it’s amazing.

Benjamin P. Levy, MD: We’re learning about lung cancer.

Kevin Kalinsky, MD, MS: Kayla and I share this amazing patient who is highly involved in patient advocacy, and a trained social worker. I feel like we reach out to her probably once a week with a patient who is just looking to find a group, have some additional support, or get information. She also participates with this group called GRASP [Guiding Researchers and Advocates to Scientific Partnerships], which is a group that really also was generated out of the DC area, which connects patients with researchers and helps explain all the various meetings and what the research means. Other groups are disease-specific groups that can be very helpful. But I fully agree with Kayla, we have some amazing examples of that at our institution.

Benjamin P. Levy, MD: [Dr Musher], what’s your parting shot in the GI [gastrointestinal] world, before we move on to ADCs [antibody-drug conjugates]? What are you seeing in terms of having partnerships with advocacy, and how helpful that is for patients who are coming to the system?

Benjamin L. Musher, MD: I would say that for GI, the best example is PanCAN [Pancreatic Cancer Action Network], which is quite an amazing advocacy group. You’re talking about a cancer with a 5% to 10%, 5-year survival overall. So there are not many survivors walking around. This has really been driven by current patients and families of deceased patients. They’ve been remarkable as far as pushing sequencing for a while. When it wasn’t done in those places, you could send specimens to PanCAN and they would do it and send you the information back. In addition, they also have a clinical trials network. We’re part of 20 to 25 academic centers. [Johns] Hopkins and [Memorial] Sloan Kettering are obviously part of Emory [University], part of the same thing. It’s called pancreatic precision promise. What they’ve said, as I’ve said, these are not super common cancers, but [pancreatic cancer] is the third cause of cancer deaths in the United States. We need to get together and form a consortium to have some clinical trials available for patients everywhere and to point patients to clinical trials that are open if their center doesn’t have one. I think the best example in the GI world is going to be PanCAN and the remarkable job they’ve done in pancreatic cancer. As far as advocacy, the payoffs are going to come in the near future, hopefully.

Rasheda Persinger, MSN, AGNP-C, AOCNP: Can I just say 1 more thing as it relates to resources? I think another big thing to tap into is knowing those stakeholders, those community groups in your local area, especially when we talk about cancer equity and making sure a lot of our patients are coming in and providing access to them. It’s good to know those different community resources to make them feel even more supported, being that they may be coming out of their community to receive treatment.

Benjamin P. Levy, MD: Yeah. You know, the running joke for me is I went into lung cancer because it was easy. There were 3 drugs when I started in 2001.

Benjamin L. Musher, MD: Carboplatin, paclitaxel, and bevacizumab.

Benjamin P. Levy, MD: There you go. How the world has changed, in a good way. It’s generated so much complexity, but that’s translated into a tremendous amount of enthusiasm and advancement for patients, but we can’t do it without advocacy. I mean, we really can’t. It takes a village, and advocacy is a part of that village. PanCAN is a perfect example, and I’ve learned that from my colleagues here. The breast [cancer] world has led this for years. Lung [cancer] is finally getting on board with LUNGevity, Free to Breathe, and the GO2 [for Lung Cancer] Foundation. And there’s just so much good science, too, coming down the pipe for these patients not to be aware of clinical trials. We do a reasonable job of exposing these patients to what the clinical trials are. Some of our patients are very motivated to travel across the country or whatnot. And these organizations will provide what those trials are. It’s been a great experience for our lung cancer patients more recently.

Transcript is AI-generated and edited for clarity and readability.