title: Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity: the MPN Landmark survey.
abstract: BACKGROUND
  The Philadelphia chromosome-negative myeloproliferative neoplasms (MPN) myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET) negatively affect patient quality of life (QoL) and are associated with increased risk of mortality.
  
  
  METHODS
  The MPN Landmark survey was conducted from May to July 2014 in patients with MF, PV, or ET under active management in the United States. The survey assessed respondent perceptions of disease burden and treatment management and included questions on overall disease burden, QoL, activities of daily living, and work productivity. Outcomes were further analyzed by calculated (ie, not respondent-reported) prognostic risk score and symptom severity quartile.
  
  
  RESULTS
  The survey was completed by 813 respondents (MF, n = 207; PV, n = 380; ET, n = 226). The median respondent age in each of the 3 MPN subtypes ranged from 62 to 66 years; median disease duration was 4 to 7 years. Many respondents reported that they had experienced MPN-related symptoms ≥1 year before diagnosis (MF, 49 %; PV, 61 %; ET, 58 %). Respondents also reported that MPN-related symptoms reduced their QoL, including respondents with low prognostic risk scores (MF, 67 %; PV, 62 %; ET, 57 %) and low symptom severity (MF, 51 %; PV, 33 %; ET, 15 %). Many respondents, including those with a low prognostic risk score, reported that their MPN had caused them to cancel planned activities or call in sick to work at least once in the preceding 30 days (cancel planned activities: MF, 56 %; PV, 35 %; ET, 35 %; call in sick: MF, 40 %; PV, 21 %; ET, 23 %).
  
  
  CONCLUSIONS
  These findings of the MPN Landmark survey support previous research about the symptom burden experienced by patients with MPNs and are the first to detail the challenges that patients with MPNs experience related to reductions in activities of daily living and work productivity.
authors.affiliation: Division of Hematology & Medical Oncology, Mayo Clinic Cancer Center, 13400 E. Shea Blvd, Scottsdale, AZ, 85259, USA. mesa.ruben@mayo.edu.
authors.forename: Ruben
authors.initials: R
authors.lastname: Mesa
authors.affiliation: St. Agnes Hospital, 900 S Caton Ave, Baltimore, MD, 21229, USA. cmiller@stagnes.org.
authors.forename: Carole B
authors.initials: CB
authors.lastname: Miller
authors.affiliation: Weill Cornell Medical College, 525 E 68Th St Starr 341, New York, NY, 10065, USA. mthyne@gmail.com.
authors.forename: Maureen
authors.initials: M
authors.lastname: Thyne
authors.affiliation: University of Pennsylvania, Abramson Cancer Center, Perelman Center for Advanced Medicine, West Pavilion, 2nd Floor, 3400 Civic Center Boulevard, Philadelphia, PA, 19104, USA. James.Mangan@uphs.upenn.edu.
authors.forename: James
authors.initials: J
authors.lastname: Mangan
authors.affiliation: Cancer Support Community, 165 W46th Street Suite 1002, New York, NY, 10036, USA. sara@cancersupportcommunity.org.
authors.forename: Sara
authors.initials: S
authors.lastname: Goldberger
authors.affiliation: Allegheny Health Network, 4815 Liberty, Mellon Suite 340, Pittsburgh, PA, 15224, USA. sfazal@wpahs.org.
authors.forename: Salman
authors.initials: S
authors.lastname: Fazal
authors.affiliation: Yale School of Public Health, Laboratory of Epidemiology and Public Health, 60 College Street, Suite 406, New Haven, CT, 06510, USA. xiaomei.ma@yale.edu.
authors.forename: Xiaomei
authors.initials: X
authors.lastname: Ma
authors.affiliation: Fred Hutchinson Cancer Research Center, 1100 Fairview Ave. North, LF-210, Seattle, WA, 98109, USA. wwilson@fhcrc.org.
authors.forename: Wendy
authors.initials: W
authors.lastname: Wilson
authors.affiliation: Incyte Corporation, 1801 Augustine Cut-Off, Wilmington, DE, 19803, USA. dparanagama@incyte.com.
authors.forename: Dilan C
authors.initials: DC
authors.lastname: Paranagama
authors.affiliation: Incyte Corporation, 1801 Augustine Cut-Off, Wilmington, DE, 19803, USA. ddubinski@incyte.com.
authors.forename: David G
authors.initials: DG
authors.lastname: Dubinski
authors.affiliation: ICF International, 530 Gaither Road, Suite 500, Rockville, MD, 20850, USA. john.boyle@icfi.com.
authors.forename: John
authors.initials: J
authors.lastname: Boyle
authors.affiliation: Icahn School of Medicine at Mount Sinai, Ruttenberg Treatment Center, 1470 Madison Avenue, 3rd Floor, New York, NY, 10029, USA. john.mascarenhas@mssm.edu.
authors.forename: John O
authors.initials: JO
authors.lastname: Mascarenhas
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D019468:Disease Management; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009026:Mortality; D009196:Myeloproliferative Disorders / Q000175:diagnosis / Q000453:epidemiology* / Q000401:mortality / Q000628:therapy; D063868:Patient Outcome Assessment; D011788:Quality of Life; D012307:Risk Factors; D014481:United States / Q000453:epidemiology