I guess I'm still not finished with commentary from the ASH conference last month.
The Oncology Learning Network posted a video of Dr. Krish Patel of the Sarah Cannon Research Institute, in Nashville, Tennessee. He discusses some research he presented at ASH this year. The presentation was called "Diverse preferences for treatment options in relapsed/refractory (R/R)
follicular lymphoma (FL): Survey results from patients in the United
States (US)."
I'm afraid I can no longer read or link to ASH abstracts from this year. That might be a temporary thing. If I can get a link to this presentation sometime soon, I'll post it here. So I'm getting my information from what Dr. Patel says in the video (there is a transcript in case anyne would like to read it or translate it).
I'm a little surprised that I didn't see this abstract when I was first searching. It's a interesting topic, and one that I was involved in for a presentation at ASCO last spring. In our ASCO presentation, we reported on research we did through the Follicular Lymphoma Foundation. That research found, in general, a kind of "let's get this over with" attitude among FL patients. Patients wanted longer Progression Free Survival, so there would be a longer time between treatment. We preferred oral tablets over infusions. We wanted limited duration for treatments, rather than something we'd need to do for the rest of our lives. And we wanted as little travel as possible, preferring to stay closer to home.
The ASH research found some similar trends. It reported on a survey of 125 FL patients with relapsed or refractory disease. As I said, the results were similar -- patients wanted less frequent treatment; a definite start and finish to the course of treatment, rather than something ongoing; they wanted to be as close to home as possible; and they wanted as little monitoring as possible.
What I found especially interesting was the conclusion that Dr. Patel reached.
The research was prompted by the large number of treatments that have been approved in recent years. As patients, we really do have a lot of choices (at least in theory). But there has been very little direct comparison between those treatments. There might be studies done after the fact, where a researcher looks at the results of clinical trials between, say, CAR-T and bispecifics. But there are very few direct comparisons, where two approved treatments are studied in a randomized two-arm trial. There is little incentive to do that if they have already been approved. The money and time needed could be spent on clinical trials to gain approval for a new treatment.
But, as Dr. Patel says, since there are so few direct comparisons between treatments, and so much difficulty in saying one is better than another, or more appropriate than another, then doctors should be paying more attention to patient preferences. It's kind of an admission that perhaps patient preferences are considered nearly enough.
Of course, it's more complicated than just asking a patient what they want. Most patients probably don't know, or don't want the burden of having to choose. I know I would like some input into treatment decisions. But I also think about people that I love who have been treated for different cancers, and I see how overwhelmed they are at the thought of making a decision like that. Better to just leave it up to the experts.
And, of course, patient preference assumes there is a choice to begin with. But plenty of patients have no choice -- their insurance company, or national health system chooses for them, or their financial situation dictates their choices, or their geographical circumstances limit what they can do. In an ideal world, a patient would have all of the information they need to make the right choice, and unlimited resources to make that choice happen. But we don't live in an ideal world.
The fact that this appears on a site called Oncology Learning Network might say something about who this is meant for. If patients have limited choices, then it's up to doctors to make them fully aware of what those choices are. And that's who this is aimed at. If oncologists know that, in general, these kinds of Quality of Life issues matter to patients, then they will begin to incorporate them into their conversations with patients.
And, looking at the bigger picture, maybe researchers who develop treatments, and companies that make them, will build those preferences into their processes, figuring out ways from the start to make treatments easier on patients. I like to think they do this already, but we also see that something like the bispecific Mosunetuzumab was approved first as an intravenous treatment, and then as subcutaneous. So it's certainly possible to make a treatment in a form that is easier on the patient.
The lesson for us as patients is to remember that we do have preferences. That's especially true of those of us who have, or may have, relapsed/refractory disease. We have the benefit of experience and time. Experience of already having had at least one treatment, and knowing what we liked and didn't like about the experience. And time to think about what we'd like to be different next time (if we need treatment again).
It's all about being aware and being clear about what you want. Not every cancer patient thinks this way, and that's fine. But if you're reading this, chances are pretty good that being informed is something that you care about.
