title: Patient perspectives of a diagnosis of myeloproliferative neoplasm in a case control study.
abstract: 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.
authors.affiliation: Centre for Cancer Research and Cell Biology, Queen's University Belfast, Belfast, Northern Ireland, UK.|Department of Haematology, Belfast City Hospital, Queen's University Belfast, C Floor, Lisburn Road, Belfast, BT9 7AB Northern Ireland, UK.
authors.forename: Mary Frances
authors.identifier: 0000-0002-0773-0204
authors.initials: MF
authors.lastname: McMullin
authors.affiliation: Centre for Public Health, Queen's University Belfast, Belfast, Northern Ireland, UK.
authors.forename: Glen
authors.initials: G
authors.lastname: James
authors.affiliation: Department of Haematology, University Hospitals Southampton NHS Foundation Trust, Southampton, Hampshire UK.
authors.forename: Andrew S
authors.initials: AS
authors.lastname: Duncombe
authors.affiliation: School of Social and Community Medicine, University of Bristol, Bristol, UK.
authors.forename: Frank
authors.initials: F
authors.lastname: de Vocht
authors.affiliation: School of Public Health, Curtin University, Perth, Australia.
authors.forename: Lin
authors.initials: L
authors.lastname: Fritschi
authors.affiliation: Centre for Cancer Research and Cell Biology, Queen's University Belfast, Belfast, Northern Ireland, UK.
authors.forename: Mike
authors.initials: M
authors.lastname: Clarke
authors.affiliation: Centre for Public Health, Queen's University Belfast, Belfast, Northern Ireland, UK.
authors.forename: Lesley A
authors.initials: LA
authors.lastname: Anderson
keywords: Case–control study; Classification; Myeloproliferative neoplasms; Patient perception