ASCO Review: Treatment Preferences in FL

It's finally time to get to some ASCO reviews.

As I said in my last post, there seems to be a much smaller number of presentations about Follicular Lymphoma this year than in the past. Not sure what that's all about. There's a major Lymphoma conference in a few weeks in Lugano, Swtzerland, and a smaller one in Texas pretty soon, so maybe researchers for those instead. I haven't seen any discussion of it online. Not a bad thing; I'm just curious.

So, as I have been promising, the first one I will look at is one that I have a co-author credit for: Abstract #11109, "Treatment preferences of patients, caregivers, and physicians in follicular lymphoma (FL): A global discrete-choice experiment (DCE) study." Authored by Mitchell Smith, Mei Xue, Erlene Seymour, Yan Meng, Julie Dodds, Todor Totev, Leah McAslan, Andrew McAslan, Robert McEachern, Paul Mollitt, Lilian Diaz, FengYi Jiang, Krysten Klein Brand (KKB), Dominic Pilon, and Keri Yang.

I don't want to misrepresent myself here. The presentation is a poster detailing the results of a survey of FL patients, their caregivers, and some oncologists. There were obviously many folks involved, and the doctors and statisticians and writers did most of the work. But there were three patients and one caregiver who added enough of our perspective on how to ask questions and what the answers meant that we earned co-author credit. Mostly, it's just really cool to see my name on an ASCO presentation abstract. 

As I said, this presentation give the results of a survey, and some of you may have taken part in it. Last November, I posted a link for the survey. If you took part, you probably remember, because it's kind of an unusual (but really interesting) way of asking people for preferences. It's called a "discrete choice experiment." In this type of survey, you are asked to make a series of choices between direct comparisons. So you might be asked if you preferred a treatment that might give you 5 years of remission, but with severe side effects, and would require 1 hour of travel? Or would you choose 2 years of remission, with mild side effects, and 3 hours of travel? The survey asks you to choose between the two. And then it gives you 10 more comparisons, with different years of remission, different side effects, and different travel times.

The idea is that you are being forced to make priorities. And those forced choices will show up as a pattern. Combine all of those choices and patterns from everyone who took the survey, and you can see larger patterns that tell you something about how patients, caregivers, and oncologists make choices about treatments.

Specifically, the survey asked questions about efficacy of treatment (how long the treatment would result in Progression-Free Survival), safety (the impact of side effects including fatigue, cytokine release syndrome (CRS), and nerve-related issues on quality of life), and convenience (the way the treatment is administered, how long the treatments take, and the time needed to travel to the treatment center). The choices aren't real treatments, just hypotheticals to get people to make a choice and create a pattern.

The survey was completed by a total of 337 patients, 37 caregivers, and 29 oncologists from 25 countries.

There were some interesting differences in the way the groups responded.

 Patients preferred treatments with a longer Progression Free Survival, mild or no impact of fatigue, CRS, and Nerve-related events. They preferred oral tablets over infusions. And they would rather have treatment twice per week for three months rater than ongoing treatment forever with a doctor's appointment every 3 months. And they'd prefer as short a travel time as possible.

All of that makes sense for patients. There's a kind of "let's get this over with" attitude that lots of us have. 

All three groups (patients, caregivers, and doctors) ranked PFS as most important. Again, this isn't very surprising. We all want our treatments to be effective for as long as possible.

But after that, there was a little bit of a difference. For patients and caregivers, the next most important thing was treatment convenience (oral tablets, less time in the doctor's office, and less travel time). But for the oncologists, the second most important thing was safety (less severe side effects). 

This makes sense, too, in many ways. The doctors who took the survey were mostly oncologists who saw patients and also did research. In a clinical trial, efficacy and safety are the most important things, so maybe that's what they are kind of trained to look at. For patients and caregivers, the treatment experience is about making it all as easy as possible, and getting it over with as quickly as possible, and moving on. 

That difference in preference should not be seen as oncologists not caring about patients' day-to-day lives. Quite the opposite. But they see that caring through a different lens. Quality of Life matters for all three groups; it's just playing out differently, based on lived experience.  

One last bit of statistical analysis that hit me hard:

"On average, patients were willing to accept reductions of 1 y of PFS for treatment requiring <30 min of travel vs >2 h, 0.7-1 y to receive treatments with less impact of AEs on QOL, 0.6 y for oral tablets vs blood collection and intravenous infusion, and 0.5 y for 3-mo treatment vs continuous duration."

As I said this is statistical analysis. No one was asked "You say you want 5 years of PFS. But how many months would you knock off that number if it meant you could take a pill instead of an infusion, or you'd have to travel for 30 minutes instead of 2 hours?" I don't think I could answer that question directly. I'm not sure any of us could. 

But that's what makes a discrete-choice experiment so interesting. By making choices, we create patterns, and someone looking carefully at those patterns can say "Reducing travel time means you'd be willing to need treatment again one year sooner than you otherwise would." It's fascinating to me.

The conclusion to the abstract is incredibly important: "Insights on differences between preferences highlight the importance of informed discussion and a balanced, individualized approach to treatment selection."

We al want the same thing, whether we are patients, caregivers, or doctors -- to knock out this cancer for as long as possible, and to do it as safely as possible while disrupting the patient's life as little as possible. But how much we value those things is going to be different for each of us. Having a conversation about it with our doctor is so very important, so everyone knows what is important when those decisions have to be made.

It was a great experience to be a part of developing and analyzing this survey, and I am appreciative of those who asked me. I hope I'm able to do something like this again in the future.

But for now, I'll keep reading and reviewing this year's ASCO presentations on FL. I'll have more for you soon.

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One more thing -- remember that I'll be one of the speakers the Follicular Lymphoma Foundation's webinar, "FL Treatment Options – What You Need to Know," taking place next Thursday, June 5, at 12:30 Eastern Time.

You can read more about the webinar and register at this link: https://us02web.zoom.us/webinar/register/2617476619964/WN_S3L8Al8tQAOjPWBy6ERxCw#/registration

Hope to see you there!

 

I'm Back! There's Work To Be Done!

I'm back again, and ready to write some more!

My wife and I just spent 10 days in Europe on a river cruise down the Rhine. A few days in the Netherlands, then Germany, France, and Switzerland. We saw many cool things, ate good food, and met interesting people. 

We've been trying to make travel a priority. We went to Italy a couple of years ago, and we starting planning our next big trip on our way home from this one. We were both lucky when we were much younger to have been able to travel, and that got harder after we had kids. Now our kids are grown, and we think about the health issues that both of us have. I'd be very sad if, one day when we're older, we looked back and say "Remember when we used to talk about traveling? That would have been nice." We don't want that to happen.

So we do what we can to make it all work. Traveling takes time, and money, and energy -- and there are times when it seems like we don't have much of any of those things. But we decided to prioritize these experiences.

To put this in cancer terms -- that's kind of what Survivorship is all about, isn't it? It's about making decisions that let us live the life that we want, on our own terms. So we'll keep driving our 12 year old car as long as we can. I'd rather drink a Kölsch in Cologne than impress the neighbors with a new CL55.

As I said, we met some wonderful people on our trip, especially a group of four from Pennsylvania, two couples who are lifelong friends. They truly made the trip something special. We enjoyed spending time with them.

And of course, as you get to know someone, there is almost always a cancer connection. It's hard to escape. One of our four new friends is a three-time cancer survivor. We shared stories -- of the awful things people have said to us about cancer, and of the importance of trying to laugh sometimes. But mostly we didn't talk about cancer. We drank wine and talked about our kids and won a trivia contest. Like I said -- survivorship. 

I hope you are all able to do the things that make you happy. It feels very good.

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I have been able to look at the ASCO abstracts for this year, and so far, I'm not seeing much about Follicular Lymphoma. I'll start reviewing them soon, including the one that I am a part of (I know I've been promising that -- I'll get to it very soon).

In the meantime, the Follicular Lymphoma Foundation has put out the official announcement for their webinar next week. Here's one of their social media posts:

 

 

I'll be one of the speakers for the webinar, which is happening next Thursday, June 5, at 12:30pm Eastern Time. I'll talk about my Follicular Lymphoma treatment experience. You'll also hear from Dr. Mitchell Smith, the Chief Medical Officer for the Follicular Lymphoma Foundation, and Prof. Andrew Davies, Professor of Haematological Oncology at University Hospital Southampton. They're both going to be fantastic. 

You can read more about the webinar and register at this link: https://us02web.zoom.us/webinar/register/2617476619964/WN_S3L8Al8tQAOjPWBy6ERxCw#/registration

If you have questions for any of the panelists, you can submit them on the registration form. 

And if you can't make it to the webinar, the FLF will post a recording on their website after it is over.

I'm really looking forward to it. The FLF is a great organization, and I'm honored that they have asked me to be a part of this. 

It's good to be back. More to come very soon.