ASCO: Unmet Information Needs

More comments on presentations at this year's ASCO meeting.

Yesterday (June 5) was National Cancer Survivors Day. A "survivor," according to the foundation that sponsors the day, is anyone who has been diagnosed with cancer and is still alive. So you're a survivor if you were diagnosed yesterday, or 14 years ago (like me). 

"Survivor" can be a problematic word -- lots of people don't like it, and for lots of reasons. Some people feel like it means their cancer is all gone, and it isn't -- even for people who don't have a disease that is incurable. 

I understand that. No word is going to describe everyone's experience. That is, what I like about that definition of "survivor" is that it also includes patients who are actively in treatment, or who haven't yet started treatment. It highlights how long the cancer experience goes on, from beginning to end.

So looking at ASCO abstracts yesterday, I paid special attention to the category called "Survivorship and Symptoms." These are presentations that focus less on the cancer cells and more on the experience. And here is where the idea of "survivor" is especially important. I've heard lots of cancer patients talk about how tough it is after treatment -- there just isn't a lot of support once cancer patients go into remission -- support for the long-term side effects, or for the emotional and mental issues that come from the experience. 

And it's why I like that "survivorship" can also include patients who have not gone into remission. Because there are a lot of unmet needs there, too. We can be so focused on the treatment that we forget about everything that surrounds it.

This is all a very long introduction to the presentation that I want to describe. It's called "A comparative study of unmet information needs of patients with lymphoma and CLL: North America and Europe." I'm linking the title, but I'm not sure it will take you to the poster right now. It might not be available for a few days.

The presentation describes a large survey conducted by the Lymphoma Coalition, an organization made up of a large number of smaller lymphoma-focused organizations from all around the world. In this study, they present some data from a huge survey of lymphoma patients and caregivers from around the world (almost 12,000 people), and compare some of the responses from Europe and North America. The questions are about Information Needs -- the places where lymphoma patients wish they had more information about their disease and the experience of living with it.

Honestly, it's not the comparison that I find interesting -- whether or not patients from North America or Europe have more questions about certain issues. It's more the total numbers -- there are many, many places where lymphoma patients feel like they need more information, no matter where they are from. 

I'm probably not supposed to do this, but I'm going to cope the chart that summarizes the results:

 

And in case the graphic makes it hard to translate, the categories are:

• Diagnosis and what it means
• Treatment options
• Support for self-care
• Psychological support/counseling
• Support for their family
• Side effects from their treatment
• Fertility
• Have not needed more information

I think what strikes me most is that the categories with the largest numbers are the ones that describe the most basic information: diagnosis, treatment, and side effects. That's a huge problem. My guess is that numbers that are really small (like "support for their family") aren't small because people know all that they need to know, but rather because they are so focused on getting information about the patient that they don't even have time to think about how it's all affecting their family.

I like to think that this blog maybe helps answer some of the questions that FL patients have about their diagnosis and especially about treatment. But I also know there are many, many people who don't read it, or who have tried and just didn't get anything out of it. 

And I hope that this study will find its way to oncologists and others who support lymphoma patients, and as a whole community, we find more ways to get vital (and basic) information to patients who need it.

It's a good time to remind people that I'm always available if you have questions or you are looking for resources or if you just need to vent to someone who is willing to listen. I'm happy to respond to emails. The important thing is that you get the information you need.

More on ASCO soon.