Patient Reported Outcomes

[bkoffman]

Hi,

Patient reported outcomes (PROs) should be part of every clinical trial. Patients can best report what patients experience. And it improves their outcomes when they are listened to and the doctors act on what they hear. DUH! At ASH 2018, Dr. Nabhan and I discuss just this: cllsociety.org/2019/08/ash-...

Stay strong.

We are all in this together.

Brian

Brian Koffman MDCM DCFP, DABFM, MS Ed

Co-Founder, Executive VP and Chief Medical Officer

CLL Society, Inc

cllsociety.org

[Smakwater]

This is great medical practice.

It is equally important for we as patients to invest in the knowledge of our condition and the ability to communicate/advocate clearly.

As you say, "Smart Patients Get Smart Care".

Thanks Again Dr. BK,

JM

[Osprey69]

Hi Brian agree with your thoughts however not sure how to make it happen. I am in clinical trial phase 1a with Loxo 305 at 2 mo plus point and have been asked very little mainly side effects which have been nonexistent. Trial very heavily directed towards tests results outcomes which I assume is usual. Fran G

[bkoffman CLL CURE Hero in reply to Osprey69]

PROs are not instead of but in addition to labs.

[Osprey69 in reply to bkoffman]

I think I do understand what PROs are my point was how do you get clinical research team interested in this information if they don’t really seem to have this as part of their agenda. Fran G

[cujoe]

Brian - Thanks for posting,

I am fortunate to currently have one of Dr. Nabhan's two collaborators on the study he discussed (Dr. Ethan Basch) as my MO for my "other" cancer. Since my CLL diagnosis 13 years ago, I have always provided a detailed write-up for every appointment with my PCP and medical specialists. My write-ups include any new information about my general health, including changes in diet and lifestyle, specific information about any medical issues since last visit, and due to the extensive familial cancer history in my case, an update on that and any other related changes in close-family medical history. So, I guess I have been providing PRO feedback to my doctors all along.

Since I go to all appointments by myself, I started doing these "Patient Updates" as a way to "checklist" questions and detail any personal changes/issues related to my general health and medical specialty. I usually start each about a week ahead of the appointment and edit the previous update with any new information. I now have a written record that when matched with my labs (also recorded in a comprehensive customized spreadsheet with graphs for key components) creates a detailed medical history. It has allowed me to track my progression (or lack thereof) and correlate changes and medical treatments to time-scaled outcomes.

I encourage all patients to do something similar. It is a great way to make sure you cover all your issues and present specific questions at each appointment. It is not uncommon to have 5 questions in your head when you left for your appointment and realize when you get home you only remembered to ask two of them.

Be Well - cujoe

PS I also always take a printout of my spreadsheet(s) and graphs, as they are invaluable when discussing trends of key lab components.