FLF Patient Survey Results

The Follicular Lymphoma Foundation published the results of its recent survey of Follicular Lymphoma patients. The survey focused on immunotherapy and communication preferences. There are some really interesting results, even for someone like me who spends a lot of time thinking about FL.

The FLF, for those who don't know, is an organization with a global mission. They provide information and support for FL patients, including funding some important research. If you haven't been to their website, it's worth a visit.

Their global mission is reflected in the survey. They include results from 791 FL patients from 49 different countries. 

One question that they asked was which treatments the patients had received. Almost 60% had received some kind of chemotherapy. 18.2% had Rituxan or Obinutuzumab on their own. 6.2% had R-squared. And 19.5% had received some other treatment. That's always interesting to me, as someone who reads (and writes) about new treatments a lot. It's easy to think that traditional chemo must be on its way out. But even with newer possibilities, chemo remains not just one options, but the option for many patients. And of course, it's a very effective option for many patients.

Along those same lines, only 1.6% have received CAR-T and 2.9% have received bispecific antibodies. Those are very small percentages, given how much excitement there is around them.

Part of the issue is they are approved for a very small percentage of patients. And then there is the cost associated with something like CAR-T.

But this is all a very good reminder for myself that what I write about is often the future, and not the present. All of the excitement, all of the clinical trials, all of the research -- that might be the reality for us in the future. But right now, patients are much more likely to get chemo, or Rituxan, or even R-squared. They are the "standard of care." It's definitely worth understanding what kinds of treatments are out there, because not every oncologist will go to the newer stuff.

Along those lines, another interesting result from the survey -- respondents were asked to rate their awareness of immunotherapy from 1 to 5. The average was 2.16. The FLF says this result was pretty consistent no matter what country they came from. That's very low. There's a critical need for information among FL patients.

When asked which types of sources they found most helpful, or would like to see more of, the respondents said Educational videos featuring healthcare professionals were most helpful. (The FLF has a bunch of these on their website.) Next came testimonials or surveys from other patients, then scientific articles, and then Frequently Asked Questions from other patients. None of these really surprise me, and it's good to see that healthcare professionals are most helpful. Patient stories are great, and I love reading them. But I've also seen lots of less-than-helpful information from other patients. It's good to see FL patients are valuing good information.

That said, the FLF would also love to hear patient stories as well. If you're interested in sharing yours, read more here about how to do it. 

There are lots of other interesting results from the survey, but I want to highlight one more. Just 9% of FL patients in the survey said they have participated in a clinical trial. They seemed really low to me. So I looked at an article from the Journal of Clinical Oncology from earlier in this year that looked at how many cancer patients in the United States have participated in a clinical trial. 

That article said that just 7% of cancer patients in the U.S. have participated in a clinical trial for a treatment. So the FL population seems more or less in line with that. But that article pointed out that clinical trials are only one kind of research that cancer patients can participate in. Almost 13% have been involved in biorepository research (where a tissue sample is saved for later examination), 7.3% in registry research (where their medical records are used for studies), 3.6% in genetic research, 2.8% in Quality of Life research, and  2.4% in economic research. So while we should all at least consider clinical trials for treatments when appropriate, we should also remember that there are lots of other ways to help with research.

So the Follicular Lymphoma Foundation survey is pretty interesting, and I encourage you to read the article that discusses the results. And while you're there, take a look around the rest of their website. Lots of god stuff there,