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



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.



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.



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.
Division of Hematology and Medical Oncology, Mayo Clinic Cancer Center, Scottsdale, Arizona.
Ruben A
RA
Mesa
Departments of Internal Medicine and Medical Oncology, St Agnes Hospital, Baltimore, Maryland.
Carole B
CB
Miller
Department of Hematology/Medical Oncology, Weill Cornell Medical College, New York, New York.
Maureen
M
Thyne
Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
James
J
Mangan
Cancer Support Community, Program Development & Delivery, New York, New York.
Sara
S
Goldberger
Division of Hematology and Cellular Therapy, Allegheny Health Network, Pittsburgh, Pennsylvania.
Salman
S
Fazal
Department of Chronic Disease Epidemiology, Yale School of Public Health, New Haven, Connecticut.
Xiaomei
X
Ma
Division of Clinical Research, Fred Hutchinson Cancer Research Center, Seattle, Washington.
Wendy
W
Wilson
Global Medical Affairs, Statistics, Incyte Corporation, Wilmington, Delaware.
Dilan C
DC
Paranagama
US Medical Affairs, Incyte Corporation, Wilmington, Delaware.
David G
DG
Dubinski
US Medical Affairs, Incyte Corporation, Wilmington, Delaware.
Ahmad
A
Naim
US Medical Affairs, Incyte Corporation, Wilmington, Delaware.
Shreekant
S
Parasuraman
Department of Survey Research, ICF International, Fairfax, Virginia.
John
J
Boyle
Division of Hematology and Medical Oncology, Icahn School of Medicine at Mount Sinai, New York, New York.
John O
JO
Mascarenhas
D005260:Female; D006801:Humans; D008297:Male; D000072103:Oncologists; D010353:Patient Education as Topic; D010361:Patients; D011087:Polycythemia Vera / Q000188:drug therapy / Q000453:epidemiology* / Q000473:pathology; D055728:Primary Myelofibrosis / Q000188:drug therapy / Q000453:epidemiology* / Q000473:pathology; D011379:Prognosis; D012307:Risk Factors; D011795:Surveys and Questionnaires; D013920:Thrombocythemia, Essential / Q000188:drug therapy / Q000453:epidemiology* / Q000473:pathology; D013927:Thrombosis / Q000188:drug therapy / Q000453:epidemiology* / Q000473:pathology; D014481:United States
communication; essential thrombocythemia; health care surveys; myeloproliferative disorder; patients; physicians; polycythemia vera; primary myelofibrosis; questionnaires
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