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Factors That Influence Patient Treatment Decision Making in the Era of Novel Agents: An Internet-Based Survey of 281 Patients with Chronic Lymphocytic Leukemia (CLL)

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Having an abstract accepted at the 2016 American Society of Hematology (ASH) Annual Meeting is so exciting!

Thanks to your strong participation and your willingness to share your concerns and preferences in managing your disease in our online Reader Poll earlier this year, we have important data on

Factors That Influence Patient Treatment Decision Making in the Era of Novel Agents: An Internet-Based Survey of 281 Patients with Chronic Lymphocytic Leukemia (CLL)

that should affect how CLL is treated going forward.

Doctors want data, especially published peer reviewed data. Such data drives their decisions about the best possible care.

Being accepted for the very competitive and limited poster space available for the CLL therapy sessions at the 2016 ASH Annual Meeting was a long shot. Many strong papers were rejected.

This is the world’s pre-eminent blood cancer meeting with attendance by some 20,000 hematologists from around the world. This is the one where the lion’s share of all the important research is presented and published. Investigators hold off on announcing new findings until this meeting.

Our paper will be seen by thousands of clinicians in San Diego next month.

More importantly, now that it is part of the published peer-reviewed medical literature; it can be quoted and referenced in treatment protocols.

Data collected from the surveys we do here at the CLL Society through our quarterly online newsletter, The CLL Tribune can make an impact.

If you haven’t already, please check out our ASH abstract online: https://ash.confex.com/ash/2016/webprogram/Paper94576.html

The 6×4 foot poster that we are now preparing will be full of more results, charts, graphs and background information. It will be up on Monday evening at the CLL therapy session.

If you notice the little stethoscope by the title of our abstract, that denotes that our abstract is clinically relevant.

In a later post, after ASH we will discuss our actual findings.

Next year if we can get the resources to do it, we want to expand the research. This time hopefully including a paper version of a survey to available in doctors’ office so we can access patients who don’t frequent the internet as often. ,. Let us know what questions you want answered by your fellow patients and we will see what we can add to a future survey.

Together we are making a real difference.

Because we are all in the this together

Brian Koffman MD  11/7/2016

The very proud volunteer medical director of the nonprofit CLL Society Inc.