Patient perspectives of a diagnosis of myeloproliferative neoplasm in a case control study

Mary Frances McMullin*, Glen James, Andrew S. Duncombe, Frank de Vocht, Lin Fritschi, Mike Clarke, Lesley A. Anderson

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)
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Background: Myeloproliferative neoplasms (MPNs) including the classic entities; polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis are rare diseases with unknown aetiology. The MOSAICC study, is an exploratory case-control study in which information was collected through telephone questionnaires and medical records. Methods: As part of the study, 106 patients with MPN were asked about their perceived diagnosis and replies correlated with their haematologist's diagnosis. For the first time, a patient perspective on their MPN diagnosis and classification was obtained. Logistic regression analyses were utilised to evaluate the role of variables in whether or not a patient reported their diagnosis during interview with co-adjustment for these variables. Chi square tests were used to investigate the association between MPN subtype and patient reported categorisation of MPN. Results: Overall, 77.4% of patients reported a diagnosis of MPN. Of those, 39.6% recognised MPN as a 'blood condition', 23.6% recognised MPN as a 'cancer' and 13.2% acknowledged MPN as an 'other medical condition'. There was minimal overlap between the categories. Patients with PV were more likely than those with ET to report their disease as a 'blood condition'. ET patients were significantly more likely than PV patients not to report their condition at all. Patients from a single centre were more likely to report their diagnosis as MPN while age, educational status, and WHO re-classification had no effect. Conclusions: The discrepancy between concepts of MPN in patients could result from differing patient interest in their condition, varying information conveyed by treating hematologists, concealment due to denial or financial concerns. Explanations for the differences in patient perception of the nature of their disease, requires further, larger scale investigation.

Original languageEnglish
Article number14
Number of pages5
JournalExperimental Hematology and Oncology
Issue number1
Publication statusPublished - 26 May 2016

Bibliographical note

We thank all the participants who contributed to the study. The work was supported by Queen’s University Belfast’s Centre for Public Health. The MOSAICC Study team acknowledges the support of the National Institute for Health Research, through the Northern Ireland Cancer Research Network (NICRN) and for Southampton the Central South Coast Cancer Network (CSCCN). The MOSAICC Study team also acknowledges the support of research nurses Emma Gaunt of Southampton and Claire Leathem of Belfast. The interpretation and reporting of these data are the sole responsibility of the authors. GJ is a Ph.D. candidate at Queen’s University Belfast supported by funding from MPN Voice.


  • Case-control study
  • Classification
  • Myeloproliferative neoplasms
  • Patient perception


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