Shared Decision-Making

Interesting research from a conference on blood disorders that brings up a lot of important issues.

The conference is from an organization called SOHO (The Society of Hematologic Oncology), and it took place September 28 to October 1. I'll be honest, I'm not really familiar with SOHO, but looking at some of the research from their meeting, it seems like I should find more time to pay attention to them.  

The specific presentation that caught my eye is called "Preferences and Perceptions Regarding Treatment Decision-Making for Relapsed or Refractory Diffuse Large B-Cell Lymphoma (R/R DLBCL)."

From the title, you can see that this isn't about Follicular Lymphoma. And if you've been reading for a while, you know that that there is a connection between FL and DLBCL. While FL is indolent and usually slow-growing, DLBCL is more aggressive and fast-growing, and some FLs can transform into DLBCL. 

But the connection I see isn't really about the type of lymphoma at all. It's about the "Perceptions Regarding Treatment Decision-Making" part of the presentation. How we decide about treatment options is an issue no matter what kind of cancer we might have.

The study looks at how patients, caregivers, and doctors feel about how much involvement all three groups have when it comes to making decisions about treatment. DLBCL is an interesting cancer to focus on because it has few options for relapsed/refractory patients -- that is, patients who have already had at least one treatment, and now need a second or third treatment because the first (or second) didn't work or stopped working after a while. 

The researchers did interviews with 30 people -- 14 DLBCL patients, 8 caregivers, and 8 oncologists. 30 people is a small study compared to something like a large phase 2 or 3 clinical trial, but doing interviews makes up for that -- the researchers can go much deeper with their questions. 

The results were really interesting to me.

About 71% of the patients and 38% of the caregivers felt like they didn't have much choice when it came to the treatment they would receive. This was usually because the doctor told them that the treatment being suggested was a well-established "standard of care." There are guidelines from the NCCN for each type of cancer that make suggestions, based on the most current research, on what treatments should be given whenever a treatment is needed. Another reason, though, was the shock from diagnosis, which made it hard for them to think clearly about what to do.

Interestingly, all of the doctors in the study felt that the limited options available from R/R DLBCL made it hard to integrate patient and caregiver choice into the decision. However, all 8 of the doctors also felt that it was important to include patients in the decisions, but 5 of the 8 also thought that lack of patient understanding made it hard to include them in the decision.

Some other issues that came up (though this doesn't cover al of them):

5 of the 16 patients thought that the doctor had over-emphasized how effective the first treatment would be, so they were unprepared for the return of the cancer.

71% of the patients felt satisfied with their treatment, though 3 patients felt overwhelmed with details, and felt that what they had first been told about treatment ended up not being true, or their treatment plan changed and the change wasn't communicated well. Also, 4 patients felt their doctor wasn't prepared to help them with issues like mental health, and 2 patients thought their doctors didn't know about treatments beyond the standard of care and couldn't make other recommendations.

Now, some of these issues have to do with DLBCL, like there being limited options available. 

But the lessons for those of us with Follicular Lymphoma, in my opinion, are clear:

First, because we do have multiple options for R/R FL, unlike DLBCL, it's possible that we'll have more choice than the patients in this study. There is less of a standard of care for FL than there is for DLBCL -- that is, less agreement among experts on which treatment should be given first, then second, then third. We have lots of options, and the range of options can be confusing (even to some doctors, from what I have been told). It's important that we know our options.

Second, it's important to get second opinions. It's easy for many of us to get overwhelmed at diagnosis, like the patients in this study. But for many of us with FL, there is less urgency. The slow-growing nature of some Follicualr Lymphoma types means we may have weeks or months to make a decision (or even longer -- I watched and waited for 2 years). That gives us time to take a deep breath, come to terms with the diagnosis, and educate ourselves. That's not the case for every FL patient, but for those of us with the luxury of time, education about the disease is a good way to spend that time.

Third, I am very aware that not all of us have a choice. Not just because we need treatment immediately, but also because insurance or whoever pays the bills may have a strict standard-of-care plan, and patients get certain treatments in a certain order whether they like it or not. Some other patients may live in a place where there aren't many oncologists, and traveling for a second opinion just isn't an option. Choices are limited. And that's OK. Choice is great, but it's important to remember too that standard-of-care is the standard because it has the most research to back it up. You might wish that you could try a new inhibitor or a radioimmunotherapy, but R-squared is all that's offered, but that doesn';t make R-squared a bad choice at all. 

The bottom line, in my opinion (and this is a good time to remind you all that I'm not a doctor or a cancer researcher, just a patient who reads and listens a lot): Stay educated. Learn as much as you can. Be able to contribute to the choice when you have the option. And if you don't have a choice, your self-education will at least let you understand the treatment that you do receive.

That's a very good thing.