Final of 3 MPN Patient Surveys

Update on Upcoming MPN surveys

MPN SurveyDear MPN Community,

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. (Editor’s Note: This survey is now closed.)

• 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 was fielded during April 2014 (Editor’s Note: This survey is now closed.)

The final questionnaire is a landmark health survey 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). This will be fielded starting May 2014. 

New MPN Patient Survey:

If you are diagnosed or caring for someone diagnosed with an MPN (essential thrombocythemia, polycythemia vera, or myelofibrosis) you can participate, or ask them to participate, in a landmark survey for patients living with these rare diseases.  The goal of this important survey is to gain the patient’s perspective on what it’s truly like to live with an MPN on a daily basis and to better understand how your symptoms affect your quality of life.

The survey is conducted online and should take approximately 20 minutes to complete.  All responses will remain anonymous and will be grouped with responses from other participants. To take the survey, follow the instructions below:

Please click here if you would like to participate in the survey –

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

Publisher’s Note

The following survey details were added by Dr Mesa for clarification:

Thank you for your interest in participating in this health survey for myeloproliferative neoplasms (MPNs) including myelofibrosis (MF), polycythemia vera (PV), or essential thrombocythemia (ET).  The study goals are to understand the awareness of MPN symptoms, patient functionality and any gaps in perception between patient and physicians with regard to symptoms and quality of life.  

The survey is conducted by a third party survey company, ICF International, Inc., a national survey research organization with specialized experience in health care research. The survey is being sponsored and funded by Incyte Corporation.  An institutional review board (IRB) has reviewed and approved the survey. ICF emphasizes that your participation is completely voluntary, and data will only be presented on an aggregated level.  If you have any questions or issues logging into the survey, please call 1-877-386-6788 or email for assistance.

About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

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