Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity: The MPN Landmark survey

Ruben Mesa, Carole B. Miller, Maureen Thyne, James Mangan, Sara Goldberger, Salman Fazal, Xiaomei Ma, Wendy Wilson, Dilan C. Paranagama, David G. Dubinski, John Boyle, John O. Mascarenhas

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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.

Original languageEnglish (US)
Article number167
JournalBMC Cancer
Volume16
Issue number1
DOIs
StatePublished - Feb 27 2016

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Essential Thrombocythemia
Polycythemia Vera
Primary Myelofibrosis
Health
Neoplasms
Quality of Life
Activities of Daily Living
Surveys and Questionnaires
Philadelphia Chromosome
Mortality

Keywords

  • Activities of daily living
  • Polycythemia vera
  • Quality of life
  • Signs and symptoms

ASJC Scopus subject areas

  • Oncology
  • Cancer Research
  • Genetics

Cite this

Mesa, R., Miller, C. B., Thyne, M., Mangan, J., Goldberger, S., Fazal, S., ... Mascarenhas, J. O. (2016). Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity: The MPN Landmark survey. BMC Cancer, 16(1), [167]. https://doi.org/10.1186/s12885-016-2208-2

Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity : The MPN Landmark survey. / Mesa, Ruben; Miller, Carole B.; Thyne, Maureen; Mangan, James; Goldberger, Sara; Fazal, Salman; Ma, Xiaomei; Wilson, Wendy; Paranagama, Dilan C.; Dubinski, David G.; Boyle, John; Mascarenhas, John O.

In: BMC Cancer, Vol. 16, No. 1, 167, 27.02.2016.

Research output: Contribution to journalArticle

Mesa, R, Miller, CB, Thyne, M, Mangan, J, Goldberger, S, Fazal, S, Ma, X, Wilson, W, Paranagama, DC, Dubinski, DG, Boyle, J & Mascarenhas, JO 2016, 'Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity: The MPN Landmark survey', BMC Cancer, vol. 16, no. 1, 167. https://doi.org/10.1186/s12885-016-2208-2
Mesa, Ruben ; Miller, Carole B. ; Thyne, Maureen ; Mangan, James ; Goldberger, Sara ; Fazal, Salman ; Ma, Xiaomei ; Wilson, Wendy ; Paranagama, Dilan C. ; Dubinski, David G. ; Boyle, John ; Mascarenhas, John O. / Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity : The MPN Landmark survey. In: BMC Cancer. 2016 ; Vol. 16, No. 1.
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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.",
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