Science & Medicine

The MPN Patient Care Survey

The MPN Patient Care Survey completed earlier this month probed both the MPN therapeutic environment and MPN patient compliance with treatment protocols. 

Some results were expected, some startling.

Preliminary studies indicate two key factors that might contribute to poor outcomes associated with delayed entry to stem cell transplant.

(1) MPN patients may not have regular access to MPN specialists.

(2) Hematologists, many of whom may never have seen a case of myelofibrosis in their practice, may be reluctant to refer their patients for transplantation.’ (Hematologists play a significant role in guiding patients to transplantation.)  The question of hematologists not specializing in care for MPN patients hesitating to refer qualified patients for transplant consultation was outside the scope of the survey.

Are MPN patients fully engaged in their own medical care? If MPN patients are lax in complying with established treatment protocols that behavior could be driving the delayed SCT entry outcome.

MPN patient lack of involvement in their care seemed unlikely in light of survey response rates. Just five years ago, it took over a month for the MPNforum Patient Fatigue Project survey to log 1062 responses.  As an indication of the growing involvement of the MPN community in its medical options, this MPN Patient Care survey (N=2384), conducted July 5-11,  generated more than double that response from MPN patients in only one-fourth the time.

Here are some summary results from the MPN Patient Care Survey:

(1) We are good about checking our blood counts.

85% of us have a CBC every six months or less.
93% of us have our hematologists review those results

(2) Those hematologists checking our CBCs are not generally MPN specialists

(3) Most of us never see an MPN specialist.

(4) Except for the JAK2 mutation, a PV diagnostic criterion, we have little idea what mutations we carry.

(5) Our MPN care physicians are reluctant to introduce us to stem cell transplantation.

Although 24.5% of us are MF patients only 7.6% have ever been referred for a transplant consultation.

These results validate a (N=300) single question survey undertaken this Spring based on  recruitment from four Facebook MPN groups. (“What is your primary source for MPN care?”).

Awaiting final analysis of the current data, here are the key charts summarizing the MPN Patient Care Survey data. The results of this survey can stimulate work in two critically important areas:  (1) Education outreach to patients and hematologists alike, and; (2) Better understanding of the mechanisms contributing to the deadly delay of qualified stem cell transplant.

The MPN Medical Care Study, sponsored by the MPN Research Foundation,  grew out of the work of the MPN Stem Cell Transplantation Timing Taskforce, the MS3T*

Qualifying note:  The surveyed universe was skewed by recruitment from MPN Facebook pages, the MPNforum subscribers, E-mail support groups like MPN-NET and MPDchat, and the MPN Research Foundation.  All these sources serve proactive, computer and internet-literate patients. In addition, conclusions are based on MPN patient perception of care.  Without direct sampling of non-MPN hematologists’ views, these conclusions can only be approximate.

This question probed the identity of the gatekeeper who would refer to the hematologist, the individual who would almost certainly provide the first definitive MPN diagnosis. Who was referring the patient? The answers indicated a great variety of sources from family physicians and unlikely medical specialists to chiropractors and other alternative medical service suppliers.

Three linked questions assessing patient participation levels in medical care.  Over 85% of patients had CBCs every six months or less with the great majority (63.2%) every three months or less with almost all reviewed by the hematologist.   Analysis of the underlying statistical data should correlate the greater frequency intervals of the minority of patinets with more acute forms of MPN.

This question probes the beliefs of MPN patients rather than the reality. Given the small pool of actual MPN specialists, it is unlikely, based on scarcity, distance to major centers, travel and cost factors, that 35.7% of the general MPN population is served by MPN specialists.  What is immediately significant is 63% of surveyed patients either believe their physician is not a specialist or simply don’t know.

Evaluation of this response will have to await statistical analysis of the underlying data. While nearly 25% of the surveyed cohort identifies with primary or secondary myelofibrosis, fewer than 8% have been referred to a transplant center.  Such referral is suggested for DIPSS Intermediate-1 risk and strongly advised for Intermediate-2.  Additionally, the question is worded to indicate referral for transplant rather than the more neutral referral for preliminary transplant consultation.

Even though most MPN patients are not served by MPN specialists, well over half (58.2%) have not seen the need to consult a physician familiar with their blood cancer.


Survey 2380 responses


  1. Phenotype distribution of cohort:    ET/PV about even/ PMF 13.3% MFs 9.9%
  2. Range of diagnosis: Earliest 86-89 – < than 1 year
  3. Dx fm Hm/Onc    77.8%,   Family physic 15 % range of endrinc/cardio/chiro etcv
  4. CBC frequency: Most every three months (63.2). three to six mos (21.6%) Monthly and annually each about 2 %, some weekly
  5. 93% have CBC reviewed by hem
  6. 72% see their Hem every six mos, 6% annually, 6% rarely, 5% every three mos.
  7. Most are on Facebook (62%) other online 43.9%)
  8. One third believe their hem is an MPN specialist,
  9. 74% have the JAK2 mutation, 11% don’t know their mutational status, 10% are CALR
  10. Only 7.6% have ever been referred to a transplant center.
  11. 42% have sought a second opinion
  •  The MPN SCT Spectrum Transplant Timing Taskforce (MS3T) members: Claire Harrison (Guy’s and St. Thomas;), Ruben Mesa. Mays Cancer Center, UT Health, Richard Silver, Weill Cornell, Serge Verstovsek, MD Anderson, Koen Van Besien, Weill Cornell, Nicolaus Kroeger, University Hospital Hamburg, Jeanne Palmer, Mayo Clinic, Uday Popat, MD Anderson, Attilio Orazi, Weill-Cornell,  Wael Sabir, CIBMTR. SCT Patients:  Chris Harper, Beatrice Larroque, Martin Prager, MPN patient advocates: Ann Brazeau, Ann Haehn, Barbara Van Husen, Michelle Woerhle, Project director: Zhenya Senyak


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© 2018, MPNforum. All rights reserved under Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License

Comments on: "The MPN Patient Care Survey" (3)

  1. Karen ulshafer said:

    Virginia, I see Dr Elizabeth Hexner at U of Penn, Abramson Cancer Center in Philly, since 2015. I value/like her tremendously and the info/insight she has given me.
    Zhen, great to see your name on this great source of info. I value and use this info when seeing the docs. Thank you.


    How do I find a MPN specialist? I live between Baltimore and Philly.

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