Upcoming MPN surveys

We are currently in an unprecedented time regarding greater understanding of myeloproliferative neoplasms (MPNs). The testing of new therapeutic agents and a genuine effort to improve the education of providers and patients will help increase options and achieve better patient outcomes. This spring of 2014, three different survey projects are underway, each intended to yield valuable information to continue improving MPN patient outcomes. This note will hopefully help clarify the goals of these three projects, especially for those who may choose to contribute to all three initiatives.

  • The first survey, already in progress, is a Fatigue-focused questionnaire for all MPN patients coordinated through Mayo Clinic. The survey will help provide information on patient-developed strategies to overcome fatigue. So far, 1500 patients have responded.
  • The second survey is a 15-minute questionnaire on the typical interaction between physicians and patients during the diagnosis and treatment of myelofibrosis only. Survey results will be used to compare patient perspectives on myelofibrosis care with those of physicians and to identify any gaps in physician-patient communication. This survey will be fielded during April 2014, and results will be discussed in a supplement to HemOnc Today. Click here if you have Myelofibrosis and would like to participate.
  • The final questionnaire is a landmark health survey administered by the Cancer Support Community that is comprehensive across all MPNs – essential thrombocythemia, polycythemia vera, and myelofibrosis. This, too, involves physicians and patients and is focused on issues of symptoms and communication between patients and their physicians regarding symptoms, and has the goal of trying to optimize care. This is the first truly broad based survey for MPN patients (i.e., not just reflecting the experience in one center, or MPN-focused centers). Click here to take this survey.

In some cases, surveys are sponosred by industry. That information should be made available to you by the study administrators if you request it. Participation in each of these surveys is anonymous, so although questions may overlap between these three different efforts, there is no way to align the questions between all three; hence, the need for some questions to be repetitive. That being said, the goals, the analysis, and the outcomes of each of these three efforts are distinct. Each will provide what we hope is very helpful information that may impact the understanding of MPNs and provide opportunities to improve care, communication, symptomatic assessment and monitoring in response to therapy. On behalf of all the investigators involved with these projects, we are very grateful for your involvement with one, two or all three of these questionnaire-based projects. We clearly recognize that these efforts are voluntary, but are most grateful for your efforts and will treat the investment of your time and energy with great respect as we try to leverage these results for the benefit of the MPN patient community.

Ruben A. Mesa, M.D.
Professor and Chair
Division of Hematology & Medical Oncology
Deputy Director, Mayo Clinic Cancer Center

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