MPN PATIENT CARE SURVEY at ASH

Science & Medicine

MPN PATIENT CARE SURVEY at ASH

We reported this past summer on the MPN Patient Care Survey initiated by MPNforum.

2380 MPN patients drawn from the MPN Research Foundation, Facebook groups, MPNforum subscribers, MPN-Net and MPDchat responded. The survey probed our therapeutic environment: Where do we get our medical care and how do we follow accepted treatment routines?

The answers are significant in several respects. At the time we were working on the Spectrum SCT Timing Tool (SSTT) and had begun to suspect that so many of us were missing the window for a successful transplant simply because we weren’t getting the most expert workups and counsel. The other area is education: That research confirmed the need for expanded outreach both to patients and hematologists who do not specialize in MPNs.

Dr. Robyn Scherber and her team took those data and analyzed findings to produce a brilliant poster that was accepted for Exhibit in the Poster Hall of the San Diego ASH meeting.

This cooperative link between academic physicians, scientistis, MPN specialists and MPN patients has yielded significant results in the past, starting with Joyce Niblack’s pioneering work with Ruben Mesa and the fatigue burden in MPNs.