Differences in treatment goals and perception of symptom burden between patients with myeloproliferative neoplasms (MPNs) and hematologists/oncologists in the United States: Findings from the MPN Landmark survey

Cancer. 2017 Feb 1;123(3):449-458. doi: 10.1002/cncr.30325. Epub 2016 Sep 30.


Background: This analysis of the myeloproliferative neoplasm (MPN) Landmark survey evaluated gaps between patient perceptions of their disease management and physician self-reported practices.

Methods: The survey included 813 patient respondents who had MPNs (myelofibrosis [MF], polycythemia vera [PV], or essential thrombocythemia [ET]) and 457 hematologist/oncologist respondents who treated patients with these conditions.

Results: Greater proportions of physician respondents reported using prognostic risk classifications (MF, 83%; PV, 59%; ET, 77%) compared with patient recollections (MF, 54%; PV, 17%; ET, 31%). Most physician respondents reported that their typical symptom assessments included asking patients about the most important symptoms or a full list of symptoms, whereas many patient respondents reported less specific assessments (eg, they were asked how they were feeling). Many patient respondents did not recognize common symptoms as MPN-related. For example, approximately one-half or more did not believe difficulty sleeping resulted from their MPN (MF, 49%; PV, 64%; ET, 76%). Physician respondents underestimated the proportion of patients who had symptomatic PV or ET at diagnosis compared with patient respondents. There was discordance regarding treatment goals: among patient respondents with MF or PV, "slow/delay progression of condition" was the most important treatment goal, whereas physician respondents reported "symptom improvement" and "prevention of vascular/thrombotic events," respectively. Finally, more than one-third of patient respondents were not "very satisfied" with their physician's overall management/communication.

Conclusions: The care and satisfaction of patients with MPN may be improved with increased patient education and improved patient-physician communication. Cancer 2017;123:449-458. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Keywords: communication; essential thrombocythemia; health care surveys; myeloproliferative disorder; patients; physicians; polycythemia vera; primary myelofibrosis; questionnaires.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Female
  • Humans
  • Male
  • Oncologists
  • Patient Education as Topic
  • Patients
  • Polycythemia Vera / drug therapy
  • Polycythemia Vera / epidemiology*
  • Polycythemia Vera / pathology
  • Primary Myelofibrosis / drug therapy
  • Primary Myelofibrosis / epidemiology*
  • Primary Myelofibrosis / pathology
  • Prognosis
  • Risk Factors
  • Surveys and Questionnaires
  • Thrombocythemia, Essential / drug therapy
  • Thrombocythemia, Essential / epidemiology*
  • Thrombocythemia, Essential / pathology
  • Thrombosis / drug therapy
  • Thrombosis / epidemiology*
  • Thrombosis / pathology
  • United States