Myeloproliferative neoplasm patient symptom burden and quality of life: Evidence of significant impairment compared to controls

Lesley A. Anderson*, Glen James, Andrew S. Duncombe, Ruben Mesa, Robyn Scherber, Amylou C. Dueck, Frank de Vocht, Mike Clarke, Mary F. Mcmullin

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

28 Citations (Scopus)


The myeloproliferative neoplasms (MPN) including polycythaemia vera (PV), essential thrombocythaemia and primary myelofibrosis (PMF) are rare diseases contributing to significant morbidity. Symptom management is a prime treatment objective but current symptom assessment tools have not been validated compared to the general population. The MPN-symptom assessment form (MPN-SAF), a reliable and validated clinical tool to assess MPN symptom burden, was administered to MPN patients (n=106) and, for the first time, population controls (n=124) as part of a UK case-control study. Mean symptom scores were compared between patients and controls adjusting for potential confounders. Mean patient scores were compared to data collected by the Mayo Clinic, USA on 1,446 international MPN patients to determine patient group representativeness. MPN patients had significantly higher mean scores than controls for 25 of the 26 symptoms measured (P<0.05); fatigue was the most common symptom (92.4% and 78.1%, respectively). Female MPN patients suffered worse symptom burden than male patients (P<0.001) and substantially worse burden than female controls (P<0.001). Compared to the Mayo clinic patients, MPN-UK patients reported similar symptom burden but lower satiety (P=0.046). Patients with PMF reported the worst symptom burden (88.3%); significantly higher than PV patients (P<0.001). For the first time we report quality of life was worse in MPN-UK patients compared with controls (P<0.001).

Original languageEnglish
Pages (from-to)864-870
Number of pages7
JournalAmerican Journal of Hematology
Issue number10
Early online date10 Sept 2015
Publication statusPublished - Oct 2015

Bibliographical note

The authors thank the patients and controls who participated in the MOSAICC and Mayo Clinic studies. The interpretation and reporting of this data are the sole responsibility of the authors. sup-ported by funding from
Funding Information
MPN Voice (MOSAICC case–control study); MPN Voice (to G.J., PhD candidate at Queen's University Belfast)


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