ASCO: Patient-Reported Outcomes

More from ASCO.

"Patient-Reported Disease Burden in Chronic Lymphocytic Leukemia, Diffuse Large B-Cell Lymphoma, and Follicular Lymphoma: Results from a National Patient Advocacy Survey" focuses on PROs: Patient-Reported Outcomes. As the title shows, patients with three types of lymphoma were asked about the problems they had as a result of their disease.

As interesting as the actual survey results were, I think the fact that they are patient-reported is even more important.

The survey was sent to 424 lymphoma patients. 69 of them have Follicular Lymphoma. The patients were asked about the impact of their disease on their physical function, sleep, cognition (how well they could think and solve problems), work, emotional health, and quality of life (QoL).

The survey used what's called a "Likert Scale" -- patients are given a statement and asked if they strongly agree, agree, disagree, strongly disagree, or are neutral.

The results weren't all that surprising, especially this one -- most patients are worried about their disease coming back or getting worse (72% of patients with CLL, 83% of patients with DLBCL, and 79% of patients with FL). As the researchers point out, it doesn't matter if patients have a fast-growing disease like DLBCL, or a slow-growing one like CLL or FL -- most of us are worried about it. It's cancer. We're cancer patients. That's just the way it is.

As far as work goes, 31% of the overall group had their "employment status change." There isn't any more detail, but I assume that means they lost their job, or had to work less. This is also not a surprise. I was lucky that my own employment status didn't change, but I've heard from lots of FL patients who weren't so lucky.

Other results for Follicular Lymphoma patients:
68% agreed or strongly agreed that the disease had an effect on their energy levels.
52% agreed or strongly agreed that the disease had an effect on their sleep patterns.
65% agreed or strongly agreed that the disease had an overall negative impact on their Quality of Life.

I get a couple of things out of this.

First, survey results like this can tell us that we're not alone. One of the really great things about a support group is that you are likely to find someone else who has had the same experience, or has had the same feelings, as you. Having Follicular Lymphoma can be a lonely thing -- how many of us knew someone else with FL when we were diagnosed? (How many of us had even heard of it? Not me,  on both counts). Seeing survey results like this helps us know that we're not alone -- others are having the same problems we're having. There's a little bot of comfort in that, I think.

But more importantly, this research is another demonstration of the importance of Patient-Reported Outcomes. Any good doctor will ask about things like sleep, work, and energy, and help with any medical solutions. Good hospitals will have social workers or other resources to help with these issues, too. But those individual good things don't always get any farther than the doctor's office. A study like this gathers all of that in one place so many others can see the results. Researchers can base their own work on what patients are concerned about. Doctors who aren't asking those questions can be more aware that they need to.

And just as important, a study like this values patient voices. If we don't speak up, no one knows what we need.

So if you ever get the chance to talk about your experiences and give your opinion -- take that opportunity. It's good for all of us.




Conclusions: Pts with CLL, DLBCL, and FL report experiencing substantial disease burden. Data from studies focusing on pt-reported disease burden can be used for education of the clinical community to address the key concerns of pts.