Managing Adverse Events—and Expectations—in Patients Treated With Immunotherapies

Karen Lee, MSN, FNP-BC

Karen Lee, MSN, FNP-BC

When treating patients with immunotherapies, oncology nursing professionals know well how critical it is to monitor patients for immune-related adverse events. As Karen Lee, MSN, FNP-BC, explained, “This is a mutual learning experience between patient and provider, or patient and nurse.”

However, another important role for nurses she said is to help patients to remain hopeful and optimistic, but to also “temper the expectations.”

“It’s still a small subset of patients that actually do respond to these drugs,” said Lee, a nurse practitioner at Memorial Sloan Kettering Cancer Center. Another important role for nurses, she said, is to reassure patients that if they do not respond to these drugs, “the care team will still always be involved and have a next plan in mind.”

Oncology Nursing News sat down with Lee at the recent Chemotherapy Foundation Symposium, where she gave a presentation on the topic as part of a nursing educational track at the meeting.

Oncology Nursing News: What would you say is the number one issue for nurses to keep in mind when treating patients receiving immunotherapies?

Karen Lee: I would say that the number one thing for nurses to do is to help temper the expectations. Certainly, there have been a lot of news articles and television commercials regarding immunotherapy, and often patients come in very excited about it. We are, too, and I do think there is something to be said for all of the buzz around these drugs.

The clinical efficacy is certainly undisputed, but I think it's still a select, small population of patients, or small subset of patients that actually do respond to these drugs. It's important to make sure that patients are aware of that as well. We are still offering them hope and being optimistic about them being one of those people who will respond, but also making sure that they understand that sometimes patients don't respond to these drugs.

What are the points nurses should emphasize when explaining to patients how these therapies work and what patients should report back to their providers?

I would say that one of the first things to do is to make sure patients understand how immunotherapy is distinct and different from chemotherapy, to just differentiate what this type of medication is. The way we generally explain it to them is that immunotherapy is really using the patient’s own body to fight against the cancer. Instead of going blindly into the body and causing undifferentiated killing of rapidly dividing cells, like chemotherapy does, immunotherapy harnesses your own immune system to fight against the cancer the way that it would with a bacterial infection or a viral infection. We do try and offer that picture for patients to understand how these drugs work.

And in terms of the side effects and what to report, that is one of the key things involved in this treatment, specifically because the side effects surrounding immunotherapy are so unique and often present very differently from patient to patient. What I usually say is that this is a mutual learning experience, between patient and provider, or patient and nurse, and we are learning together. It's more about knowing where your patients are at baseline and then having them let you know of anything that changes moving forward. It's keeping that open line of communication, educating them on the potential side effects before treatment has started.

Have any specific guidelines been developed for nurses in this area?

To date, there have not been any prospective studies looking at management of immune-related adverse events. There are, however, a handful of great retrospective reviews that do offer some guidance on how to manage the side effects with these treatments. I think certainly more and more information will come out, especially as we're seeing combination therapies coming out into the forefront. For now, you have the guidance that is available in the reviews. We definitely use the Common Terminology Criteria for Adverse Events (CTCAE) guidelines to help with the grading and then the management follows along the same vein of managing the different autoimmune diseases. We can use some of those advances, and apply them to whatever organ system happens to be inflamed when it comes to the immune-mediated adverse events.

Immunotherapies have had a big impact on your specialty, thoracic oncology. What are some of the particular considerations in using these therapies for patients with lung cancer?

For anybody with any experience with lung cancer, you know that it is historically a very challenging diagnosis, and often patients, particularly in the metastatic setting, have generally very poor prognoses. Immunotherapy has been a big game-changer for us, something very exciting for us in thoracic oncology. I would say that one of the most important things to keep in mind, as I mentioned before, is to temper the expectations, because it is a small subset of patients that do respond to these drugs.

Additionally, now that there is the new first-line indication [for pembrolizumab] for patients whose tumors have ³50% PD-L1 expression, it is important to work together with the interdisciplinary team at our institution, and for other providers at their own institutions, to understand how to move forward with integrating testing and making that process seamless. Offering patients this drug at first-line is new to everybody, so we need to work together with patients, with interdisciplinary colleagues, to manage side effects that might happen, to understand how to interpret imaging and response, and then crafting a plan for them after they've progressed on this treatment and what happens after that.

What about the caregivers? How important is their role?

Caregivers are extremely important. What I always generally say is that cancer is a family disease, and for patients who don't have relatives, it's a community disease, a disease among friends. It's something that's shared and impacts not only the patient but the people close to them.

It's very important to us and very encouraging when we do see caregivers actively involved, whether it's family members or friends, because we know that it's overwhelming for patients to be able to absorb all of the information we throw at them. So we like to have caregivers be a part of that discussion, when we're crafting the plan, anytime they're coming in for treatment, and revisiting those discussions about side effects. Because caregivers can help patients to absorb the information, take notes, and communicate information back to the patient after we've left the room. Often it's kind of a blur for the patients, getting all of that information at once. We do appreciate when caregivers are there.

For our institution, in addition to providing patient education materials, we do sometimes often material that is directed to the caregiver. We have supplementary, supportive options, like lectures for caregivers, support groups for caregivers. We try to involve them and make sure that they're very integrated into the whole plan so that we all work as a team.