Coping With the Uncertainty of Indolent Non-Hodgkin Lymphoma With Richard Newcomb, MD

Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we're here at the ASCO Annual Meeting, and I'm joined by Dr. Richard Newcomb. Thanks much for coming on.

Richard Newcomb, MD: Yes, thanks for having me.

Oncology Data Advisor: You're presenting a poster here about uncertainty and coping in patients with newly diagnosed indolent non-Hodgkin's lymphoma. To start off, could you tell us a little bit about indolent NHL and why you chose to study this patient population?

Dr. Newcomb: As background, I'm an Oncology Fellow at the combined Dana-Farber/Mass General Cancer Center. One of the things I noticed in my clinical year is that there was a population of patients who were new consults with lymphoma, and they had a lot of distress about their diagnosis. It was actually these patients with indolent diseases, such as chronic lymphocytic leukemia (CLL) that was just a high number on a blood count but no actual symptoms, or follicular lymphoma that was found incidentally on a computed tomography (CT) scan and biopsied.

Now, all of a sudden, you have a patient who's being told simultaneously that they have cancer but that they shouldn't worry because the vast majority of these patients go on to live lives in which the cancer doesn't have meaningful impact, and if it does have impact, we have good treatments now. I think that I just found myself repeating that phrase to patients, but it didn't seem to be registering in the sense there was still a lot of distress around it, so I wanted to study that more.

Oncology Data Advisor: What are some of the major causes of uncertainty that newly diagnosed patients with this disease experience?

Dr. Newcomb: When we did a literature search, there was some degree in which people had somewhat looked at this and tied it to fear. Say you're on active surveillance, so you're just getting your blood counts monitored, and maybe you're getting CT scans or positron emission tomography (PET) scans. The fear of needing treatment was one area that had been documented. Then the other area that had been documented was fear of transformation to a more aggressive lymphoma, which can happen—not frequently, but not rarely, so to speak. Those were two areas.

My mentor had recently developed a new scale called the Prognostic Awareness Impact Scale, which we had used to study patients with aggressive lymphoma who were receiving chimeric antigen receptor (CAR) T-cell therapy, but nobody had ever used this scale to really assess people's perception of prognosis with indolent diseases. It's an interesting instrument because you get people's cognitive understanding of their prognosis, you get how they're emotionally coping, and then you get the adaptive behaviors that they've implemented after learning about their diagnosis. I just thought this was a cool opportunity to better explore what people's perceptions of their prognosis were and to do it right at diagnosis when their distress seemed to be quite high.

Oncology Data Advisor: Definitely. You mentioned coping strategies—what were the coping strategies people used that you found to be most effective?

Dr. Newcomb: Effective is an interesting word because this published data is just looking at the time of diagnosis. Certainly, patients who used more approach-oriented coping techniques—approach-oriented means seeking support outside of yourself, whether you're looking to others for emotional support or you're cognitively reframing whatever it is that you're coping with—people that use multiple of those strategies seem to have a better baseline quality of life, as well as less psychological distress. It remains to be seen, at least in our data, what that's like in their first year of diagnosis. We're still collecting data at different time points for those things.

The other thing with using this new scale is it seemed that people who used higher emotional coping—basically, more adaptively coping with the idea of their prognosis—also reported higher quality of life and less distress. That was interesting. It kind of jives; it makes sense. I think the next series of questions is just going to revolve around whether we can design interventions to support that—either to keep that high throughout the first year of diagnosis, or to take people who aren't using those techniques and try to promote them.

Oncology Data Advisor: Right, definitely. Do you have any advice or strategies for clinicians whose patients are experiencing uncertainty, regarding how they can help support them?

Dr. Newcomb: That's a great question. I guess I would say two things. One is that even though we found the reframe of reassurance as not resonating, I think that is still a really important message. The fact is that many patients actually receive it, and that probably helps them with their coping. Having some understanding of what's ahead is probably a good thing. Disease education, as a lot of lymphoma specialists are doing out there in the community already, is really important.

I think what we'll find is that there's a subset of patients who still have distress who may need something more. That's where we're hoping to come in with filling that space with a supportive intervention. In general, in the absence of something that's tailored to that, such as cancer centers that have access to social workers—particularly for patients with persistent anxiety and distress—maybe there are therapy services or psychology resources that could be helpful. All that's a little premature to say. I don't have actually any hard data to suggest that people should be doing that, but that's what we're hoping to develop as more of this data comes in.

Oncology Data Advisor: That's great. That's definitely really important. One last question I'll ask you is, because the theme of ASCO this year is "Partnering with Patients," obviously this study definitely addresses that. How does this theme fit into your research and your work with patients?

Dr. Newcomb: In general, in the sort of work that I do—you could broadly call it supportive oncology—you have to partner with patients. I think for me, a lot of the things I want to do are about improving the patient experience. Everybody's cancer journey has ups and downs, and obviously innovating on treatments and treatment paradigms and sequences of therapies is super important, and there's a lot of innovation in that space. I think also at the same time, we have to be innovating and supporting people's psyches through the whole thing, and their families too. The only way you can do that is through patient-centered research—just asking people how they feel, following them, taking that information, and developing interventions that work for people. You have to partner with patients for that.

Oncology Data Advisor: Awesome. Well, this was really great to hear about your study. Thank you so much for stopping by to talk about it.

Dr. Newcomb: Thanks so much for having me. This was really fun.

About Dr. Newcomb

Richard Newcomb, MD, is a Hematology/Oncology Fellow at Dana-Farber Cancer Institute and Mass General Hospital (MGH). Dr. Newcomb is the Chief Resident in the MGH Department of Medicine and works in the Cancer Outcomes Research and Education Program at MGH. His research focuses on improving quality of life for patients with malignant and benign hematologic diseases through patient-centered health services.

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Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.