Announcements el pt

Quality of Life — a Web Survey

Date: June 20, 2024

by Chaya Venkat

Mayo Clinic Investigates Quality of Life for CLL Patients

Editor's Note:

August 8, 2024. This survey was taken off the air as of October, 2024. The research team from Mayo was very pleased with the patient response. The team collected over 1,400 online responses and is currently working on analyzing the data and drafting papers for submissions to scholarly journals. We anticipate the publication of the first of these papers soon. We will provide updates on the results as they are published.

September 29, 2024. The first of the articles based on analysis of the data from this survey was published in the British Journal of Haematology. For details, see Topics Alert #253: Quality of Life with CLL.

If CLL is such a "good cancer to have", how come so many of us don't feel quite so good? Just exactly how many of us are dealing with the dreaded "B-symptoms"? Or is your fatigue all in your head you poor dear, you are just imagining it?

These questions lead to a very important question, just how is Quality of Life with CLL? What can a newly diagnosed patient expect? Are you doing as well as can be expected, or do you have a tougher row to hoe than the average CLL patients? It is all well and fine for us old-timers to grumble about stuff that is not quite right with us on internet chat rooms, but that is purely anecdotal information and it cuts no mustard with doctors and experts. We need legitimate, well conducted, statistically valid Quality of Life surveys from unimpeachable researchers to get a handle on this important issue. Without credible data to document our quality of life issues, to quote the comic Mr. Rodney Dangerfield, we will continue to get no respect.

Here are some issues that are of importance to patients:

• Does Quality of Life go downhill over time with CLL?
• Does your age or sex have anything to do with it?
• How much of an impact does prior therapy have on QOL?
• Does the type of therapy chosen impact QOL?
• Are more aggressive therapies better, or should we be looking at kinder and gentler versions, to have better QOL?
• How frequent are infections, and hospitalizations?

I am quite sure each of us can add many more items to this list.

Mayo Clinic Announces a Major QOL Survey for CLL Patients

I am pleased to announce the prestigious Mayo Clinic (Rochester, MN) has just started an Internet based QOL survey for CLL patients. It is headed by Drs. Call, Kay, Shanafelt and Zent. Many of you are familiar with these names, either because you have made the trip up to Mayo for a second opinion or because you follow their many articles we have reviewed on our website. Either way, these guys are right up there on the short list of CLL experts worldwide, and on my personal (and even shorter list) of good guys. When Mayo experts speak, local oncologists tend to listen. This survey is going to be valuable to us as patients, since it will define the "Best Practices " understanding of what is going on with us, what to expect, what to watch out for, in terms of our quality of life. CLL Topics is pleased and proud to be partnering once again with Mayo Clinic in getting wide publicity to this effort. The statistical significance and credibility of the results will bestrongly influenced by the size of the data sample. Here is a chance for us to help ourselves as a community. Please click on the link below — it will take you to the online survey. The survey will take you about 20 minutes to finish, and I promise it will not hurt one bit. Do this for yourself, do this for all of us. Just do it. OK?

If you have access to other Internet forums or sites, as a regular member or moderator, please consider posting this message on those sites as well. We are looking for literally thousands of participants and that is a pretty ambitious target. The wider the net, the more likely we are to get the level of participation that is needed for this survey. So, do us a favor, get the message out folks. We are counting on you to get this important job done right. Please do us proud.