ASCO: Patient-Reported Outcomes

I'm still looking at research from ASCO, but here's another one that I found really interesting: a study of Patient-Reported Outcomes from cancer patients using Apple Watches and emojis.

Let me say, first off, that this research caught my eye because the presenter at ASCO was Dr. Carrie Thompson of the Mayo Clinic. If I haven't already named her so (and, as we all know, I have the power to do this), I think we can safely say that Dr. Thompson is a Lymphoma Rock Star.

Her research focuses a lot on Quality of Life. As great as it is to have Rock Stars who are doing research on CAR-T and Immunotherapy, a cancer treatment doesn't mean much if researchers don't consider Quality of Life. A treatment might add months or years to Overall Survival, but is it really an improvement if the treatment also causes problems that make it heard to live our everyday lives. Every cancer treatment has side effects -- we can't avoid them -- but not every trial seems to pay attention to Quality of Life. if nothing else, research like the kind that Dr. Thompson does helps remind the lymphoma community that Quality of Life has to matter.

The research she reported on at ASCO was part of a panel that looked at Patient-Reported Outcomes (PROs). A PRO, as the name implies, is a report that comes directly from the patient on how the patient is doing. In my own case (and probably yours), an oncologist can take blood and analyze it, feel around for swollen nodes, and conduct other tests. Those aren't patient-reported. If he asks me how I'm doing, now we're getting a little closer to a PRO. But for researchers, PROs have to be a little more formal than just asking how a patient is doing. 

The research that Dr. Thompson and her colleagues did was meant to gather some PROs, but also to see  how easy it would be to gather them. Patients (with several types of cancer, not just Lymphoma) were put into three groups, with each group reporting on how they were doing, answering questions on issues like physical and mental health, fatigue, sleep disturbance, social/role function, and anxiety.One group answered weekly questions with a paper survey, one group used an app on an iPhone, and one used the Apple Watch. Groups 2 and 3 responded using emojis (cartoon faces that represent how they feel, like 😀 😌 😐 😑 😟 😢  -- not sure what their scale was).

The type of data they gathered looked at Quality of Life. For example, patients were asked how physically active they were . The Apple Watch allowed the researchers to compare, for example, the number of steps that patients took each day. They found that patients who took more steps (and so were more physically active) had less fatigue (a very common symptom for patients who are going through treatment, or who have finished it) and slept better, among other things.

A watch or the iPhone app might make reporting outcomes easier (I hate to say it, but I use my phone more and more every day), and the easier it is to gather that info, the more PROs we have might available for researchers.

And, of course, the more PROs available to researchers, the more they can hear the patient's voice. 

And, of course, the patient's voice should matter. A lot.

I hope we'll keep seeing research that uses PROs, values patient voices, and considers Quality of Life and how to measure it. (If you have the opportunity to participate in this kind of research, you should absolutely do it -- the only side effect seems to be that your phone battery might drain a little more quickly than you're used to.)