EHA: Treatment Preferences for Patients with R/R FL

I've said this before -- I know that many of you live outside the United States, and I try to make an effort to look at research from outside my country, or research that affects those of you in other countries. I know I could do better with that.

So I'm going to look at some of the research from the European Haematalogical Association meeting from last week. It's the European equivalent of ASH, and their meeting happens immediately after the ASCO meeting in the U.S. (which is why I probably don't talk about it much). With so little FL news at ASCO, I was hoping that there would be more at EHA, and indeed there was. 

I'll start with a presentation called "Treatment Preferences and Quality of Life in Patients with Relapsed/Refractory Follicular Lymphoma." 

The researchers acknowledge that first, most FL patients will end up needing more than one rund of treatment -- we will likely be relapsed (our treatment stopped working) or refractory (the treatment didn't work in the first place). And second, with more treatment choices than in the past, the needs and preferences of patients are becoming more important.

So they set out to find what those needs and preferences were. They surveyed 195 R/R FL patients in the U.S., Germany, the U.K., Brazil, France, and Japan. They were interested in Quality of Life, which they measured with several particular surveys. They found that their disease and its treatment had indeed affected their Quality of Life. For example, among the 62% of the patients who currently held jobs, in the 7 days before the surveys were filed out, 35% had missed work, 38% dealt with presenteeism (being at work, but not being as productive), 49% felt overall work productivity impairment, and 42% felt overall activity impairment.

This is no surprise. Whether from the disease or from the short- and long-term side effects of treatment, we're often not ourselves. And any 7 day period will have different numbers (we all have our good days and bad days), but it seems pretty accurate to say that about half of us just don't feel like our full selves at any given time.

What I found even more interesting, though, were the questions they asked about treatment choices. They asked the FL patients which of the following factors played a role in deciding which treatment to go with -- Progression Free Survival (PFS), 5 Year Overall Survival (OS), Serious Adverse Events (side effects), Cytokine Release Syndrome (CRS), Neurological Events (NE), Fatigue, and Administration (the time and effort it takes to receive the treatment). They did this by giving the patients pairs of factors ("Which is more important, PFS or Fatigue?) until each patient had chosen each factor in relation to each other treatment factor.

What I found so interesting is that the things that mattered actually changed with each round of treatment. 

For patients who were receiving their second treatment (remember, these are R/R patients), the most important factor was PFS -- having as long a stretch as possible before the disease came back. Second most important as reducing the risk of NEs. That says as much about their first treatment as it does anything else -- nerve-related issues must have been very common in their treatment. (The abstracxt doesn't say what their first line of treatment was.) And PFS just makes sense -- they've been through treatment already, and they don't want to get the news for a third time that they have active FL. 

And for these patients receiving a second treatment, 5 Year Overall Survival and reducing Serous Side Effects were least important. The 5 Year OS makes sense to me -- there seems to be a kind of acceptance that this is probably coming back, and PFS matters more than OS (they both measure Survival). The risk of Serious Side Effects is a little surprising, though. But it does add to the idea that these patients just want to stay alive and are willing to risk the problems that come with that.

Interestingly, patients who had received a third treatment ranked Administration as most important. The researchers think that having Autologous Stem Cell Transplants was an influence here; an Auto SCT involves getting treatment, removing healthy immune cells, getting more treatment, and putting the cells back in, and waiting for the immune system to rebuild itself. It's a long process, and much more involved than most other treatments. The third treatment group also valued increasing PFS. Least important were, again, Serious Side Effects and Cytokine Release Syndrome (a potentially serious side effect in its own right).

Certainly, each of us will have our own priorities when it comes to treatment, and no doubt some of these factors will play a role. As you probably know, I have been very fortunate to have an indolent disease so far, and so I haven't had need for a second round of treatment. I do talk about that choice often with my oncologist, and I suppose when I make that choice, it will depend on how aggressive the disease presents itself. 

But the big take away for me is that it is worth thinking about, even when we don't need it yet. I'd rather have the time to think through those decisions now, rather than making them when I'm probably going to be more emotional than I'd wish. 

And most importantly, it's great that oncologists are recognizing that more treatment choices means more decisions for patients -- and the good and bad that having so many choices can bring.