Patient-Centered Decision Making (Video Series)

A website called The Cancer Network has a new short video series for doctors called "Around the Practice: Patient-Centered Decision-Making in Relapsed/Refractory Follicular Lymphoma." It is meant for doctors, but not Lymphoma specialists. So it's general enough to be understandable.

The focus is on Relapsed/Refractory Follicular Lymphoma, so it's about making treatment decisions after at least one treatment. I find these kinds of discussions interesting, because, of course, I have already had treatment. But there is also a sense that the patient already knows what's happening. It's a different kind of discussion. I'll explain what I mean below.

The videos feature three oncologists -- Dr. Reem Karmali of Northwestern University, Dr. Daniel Landsburg of the University of Pennsylvania, and Dr. Geoffrey Shouse of City of Hope. The video series includes 4 videos, all fairly short. The first gives a general overview of Follicular Lymphoma, especially Relapsed/Refractory FL, and the notes for doctors underneath the video gives some advice for doctors about what they should look for to determine if a patient has relapsed. There are no surprises here -- swollen lymph nodes, for example, or "B symptoms" like fever, night sweats, and unexplained weight loss.

What I find really interesting is the assumption that doctors would find those things before a patient found them. This is R/R Follicular Lymphoma -- people who have experience with this. Of course, not every patient has had B symptoms the first time around (including me). But I get the sense that most of us know our bodies well enough that if something unusual popped up, we would probably know there was an issue before we ever got to a doctor's office.

That's not a criticism of the video series -- the second video opens with the advice that the panelists would give to their patients about what to look out for, so this is truly "patient-centered" as the title suggests. It just strikes me more and more that R/R FL is different in many ways than first-line, untreated FL.

The videos also get into what doctors should do if a patient does seem to be relapsing, including what a new biopsy might reveal. Here they discuss things like POD24 or transformation, as well as the possibility that a patient might no longer be CD20 positive, meaning something like Rituxan would not work, and different treatment should be considered. So I'm not suggesting a patient knows everything here; obviously, a biopsy or a scan or new blood tests are going to tell the doctor things that a patient can't know just because they sense that something isn't right.

The third video really gets at the "patient-centered" focus of the video series, and the idea that, by the time someone needs a third-line treatment, there are lots of decisions that need to be made. One of the panelists says that his approach is a "partnership" with the patient. It's a recognition that his own goals might not match up with the patient's goals -- how much time they need to take to travel, how much they will need a caregiver's help, etc. And Dr. Shouse does recognize that many patients at this point have a good understanding of the process of deciding on treatment. 

The final video puts all of this into practice, presenting a case study of a patient with FL who needs a third-line treatment. I always enjoy videos like this. I like to see the thought process of experts and all of the different factors that they balance when they recommend a particular Treatment to a particular patient. Again, this is where the patient-centered focus comes in. The case study describes all of the lab and test results as well as her physical characteristics, and her treatment history. It also includes some information about her general treatment preference, given her personal circumstances. This is kind of the fun part for me, trying to guess what the Lymphoma specialists would recommend.

I won't give you any spoilers, but I will say this -- my guess about her treatment was wrong. You want to know why? Because I'm not a doctor. And that might be the most important lesson of all here. As much as we (and certainly I) know about the disease and about my own body, the best person to talk to about all of this is our oncologist. 

This last video was posted just today, so there might be more in the series (I suspect there is, because one of the panelists has not yet given an opinion about the case study). I'll keep an eye out for a potential part 5.

But for now, I recommend the series as a nice refresher about what needs to be considered when third-line treatment becomes necessary, and a nice reminder that a patient-doctor partnership is essential when that time comes.