As the indications for and use of immuno-oncology (I-O) agents continue to expand, clinicians need to consider how best to create a supportive treatment environment in community cancer settings. The Institute of Clinical Immuno-Oncology (ICLIO) spoke with Joanne Riemer, RN, BSN, research nurse at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital. Ms. Riemer has worked in immuno-oncology trials since January 2011.
Tools for Nurse and Patient Education
What are some of the specific things that you’re doing at Johns Hopkins to create a supportive treatment environment for patients being treated with I-O agents?
Joanne Riemer: For a long time I’ve been working [with Dr. Jarushka Naidoo and Dr. Kristen Marrone] on a nurse education booklet for immunotherapy checkpoint inhibitors. When the first checkpoint inhibitor was approved by the FDA [Food and Drug Administration], I was concerned nurses would not recognize the side effects of immunotherapy and would treat it like chemotherapy. It’s not like chemotherapy at all.
We need to create a process by which we get a very detailed baseline and have education for our treatment and triage nurses. When we tell patients they have to call in with symptoms, whoever is on the receiving end of that phone [call] needs to recognize this could be an immune-related side effect, and we need to evaluate it and not necessarily feel it is ok to wait until the next visit.
I’ve also started working on some patient education tools that explain to patients the differences of I-O treatment from chemotherapy. Patients need to know that immune therapy works on the immune system, and the side effects may be very different than what they have traditionally thought of as cancer treatment side effects. Patients need to tell us about symptoms early and manage them early. They may actually be able to come back on the drug and actually get it for a longer period of time.
Patients need to carry an immune-related side effects ID card. This should include information on some of these symptoms and have all the contact information for their oncology team, as well as what drugs they’re receiving. It has to be very short so it gets their attention, it can fit on a card, and it’s with patients all the time. Nurses should check that patients have their contact ID card on them when [they are] in the clinic. If they don’t have their card, nurses should give patients a new card.
We are still working on our process for patient education and triage in regards to immunotherapy at Hopkins. We are developing a core team of I-O superusers to help evaluate and manage irAEs.
It’s an ongoing effort to keep that education piece moving along so that all members of the multidisciplinary team are on board with what’s going on in immuno-oncology.
Riemer: Yes. We are actively meeting now to finally get this education strategy going. I’m a research nurse. I’m not in the clinic with standard-of-care patients. The management in the clinic are working with the research team to establish pathways and order sets to respond to possible immune-related adverse events. We hope to evaluate the triage process, our urgent care clinic team process, and patient education. In the last couple of years, the triage team has experienced what we’ve been experiencing in the research world for some years now.
Scripted Conversations, Targeted Questions
Immune-related adverse events are front and center as issues that nurses need to be thinking about in relation to creating a supportive treatment environment. Are there other things that are particular to immuno-oncology that nurses need to be thinking about and preempting for patients?
Riemer: Nurses need to have a script that they walk through every time they see patients. Sometimes patients won’t tell you about everything. You need to ask patients targeted questions, such as, “From head to toe, are you having any headaches? How’s your energy level? Any visual changes? Have you had any diarrhea or constipation issues? Any nausea?” Now that we’re getting shorter and shorter time in the infusion chair, getting information from patients is more challenging. We need to be prepared.
Also, some of these drugs are only given every three weeks. Nurses may call patients the week before to make sure they’re not having problems because they’re going to be coming in for treatment, but as these treatments get further and further apart—every three weeks, or every four weeks—there probably needs to be some sort of check-in point.
That could be a phone call or an additional visit. It could be an app on the patient’s phone that pops up and says, “Are you experiencing any of these side effects?” And, if the answer to any of them is “yes,” it might prompt a call or it may prompt a visit. I’m not sure yet what that program will look like.
What are you doing to get more clinicians at Hopkins to think about how to manage patients being treated with I-O agents?
Riemer: Well, it’s not just nursing who needs to know about managing irAEs. Physicians are starting to gather all the specialists with experience of these I-O agents to create tumor boards for irAE evaluation and management. It’s one thing to tell triage nurses that they need to bring patients in to be evaluated, but we also need to educate personnel in our urgent care center to be aware of immune-related adverse events and what to anticipate with them. For instance, order sets could be created to trigger a particular approach to evaluation for patients who come to urgent care with a possible immune-related adverse event.
We have an urgent care department here at Hopkins in oncology, which has been really helpful, and they are getting more and more experience treating patients with irAEs. So far we don’t have irAE pathways or order sets, but we’re trying to create those. We are setting up an immune-related tumor board that involves not only the oncologists, but also rheumatologists, endocrinologists, and the different specialists that we think need to be involved here. Specialist input will help us develop some of irAE management pathways.
What are some of the challenges in trying to send this message out to people who really need to know about managing patients with immune-related adverse events in particular?
Riemer: Well, it’s hard to change the chemotherapy mindset. In the past, with chemotherapy you had to be a little bit cavalier. You had to march forward sometimes even when you thought, “Oh, the patient could really use a break.” With immuno-oncology the change is, let’s evaluate. If patients have symptoms, we want to evaluate them early and then not be afraid to hold the drug if that’s what we think needs to happen. That’s a different approach.
Also, all of our order sets automatically trigger a prescription for Compazine, but if patients have nausea when they’re on immunotherapy, it might be something that we need to evaluate and not just give them something to treat the nausea. It’s hard to change people from a chemotherapy to an immunotherapy mindset.
If a community cancer center was thinking about standardizing some of its approaches to creating a supportive treatment environment, what would you recommend?
Riemer: It’s a big project. It’s happening not just at the community center, but it’s happening across the whole oncology realm. I understand the FDA is asking industry to coordinate their algorithms for managing irAEs as there are a lot of differences. So, community cancer centers should not feel like they’re alone. We’re in a time of transition, and we have to realize that we’re using immunotherapy and not chemotherapy.
Patients need to be educated every time they come in that these symptoms can happen pretty much any time. Patients can go off this treatment, and, months later, develop immune-related adverse events. So we have to keep reinforcing that and that if they have these symptoms, they need to be in touch with their cancer team. And, if they wind up in an emergency room at any time, they need to let the emergency room physician know who to call while they’re in the emergency room, talk to their cancer care [team], because this could be an immune-related adverse event.
Providers also need to have a list of all the specialists that they might need, especially specialists that have immune-related experience. Calling a rheumatologist that has no experience with immunotherapy might not lead you to the information you need, especially since immune-related side effects may need to be treated differently from other autoimmune conditions.
Clinicians managing patients with irAEs need access to specialist assistance when they need it—you don’t want to be looking for that endocrinologist when you’re right in the throes of things. Immune-related adverse events may start vague, but they can progress quickly. You want to have patients evaluated within a short period of time.
If you feel like you’re going to want to start steroids on this patient, is there an endocrinologist that might say, “Hey, before you get those or start them on steroids, could you draw these samples so that we have a baseline before you put them on steroids?” Providers need to have specialist contact information, and even if they had to wait to get somebody in to see the endocrinologist, consider taking baseline blood samples, get that patient started on steroids, and get any required specialist evaluation.1-2
There are studies that are looking at some of the specifics when patients are having immune-related adverse events. I think we’re going to learn very much over the next year to two years. Clinicians need to be open to continue learning about these drugs, and specialists need to have education about irAEs as well.
- Weber JS, Yang JC, Atkins MB, Disis ML. Toxicities of immunotherapy for the practitioner. J Clin Oncol. 2015;33(18):2092-2099.
- Postow MA. Managing immune checkpoint-blocking antibody side effects. Am Soc Clin Oncol Educ Book. 2015:76-83.