Patient perspectives of a diagnosis of myeloproliferative neoplasm in a case control study
Tóm tắt
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. 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. 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. 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.
Tài liệu tham khảo
Titmarsh GJ, Duncombe AS, McMullin MF, et al. How common are myeloproliferative neoplasms? a systematic review and meta-analysis. Am J Hematol. 2014;89(6):581–7.
Hoffbrand AV, Moss PAH, Pettit JE. Essential haematology myeloproliferative disorders. 5th ed. Oxford: Blackwell Publishing; 2006. p. 230–40.
Passamonti F, Rumi E, Pungolino E, et al. Life expectancy and prognostic factors for survival in patients with polycythemia vera and essential thrombocythemia. Am J Med. 2004;117(10):755–61.
Cervantes F, Dupriez B, Passamonti F, et al. Improving survival trends in primary myelofibrosis: an international study. J Am Soc Clin Oncol. 2012;30(24):2981–7.
Vardiman JW, Porwit A, Brunning RD, et al. Introduction and overview of the classification of myeloid neoplasms. In: Swerdlow SH, Campo E, Harris NL, et al., editors. The World Health Organization (WHO) classification of tumours of haematolpoeitic and lymphoid tissues. 4th ed. Lyon: IARC; 2008. p. 18–30.
Tefferi A. Novel mutations and their functional and clinical relevance in myeloproliferative neoplasms: JAK2, MPL, TET2, ASXL1, CBL, IDH and IKZF1. Leukemia. 2010;24(6):1128–38.
Levine RL, Wadleigh M, Cools J, et al. Activating mutation in the tyrosine kinase JAK2 in polycythemia vera, essential thrombocythemia, and myeloid metaplasia with myelofibrosis. Cancer Cell. 2005;7(4):387–97.
Pikman Y, Lee BH, Mercher T, et al. MPLW515L is a novel somatic activating mutation in myelofibrosis with myeloid metaplasia. PLoS Med. 2006;3(7):e270.
Nangalia J, Massie CE, Baxter EJ, et al. Somatic CALR mutations in myeloproliferative neoplasms with nonmutated JAK2. N Engl J Med. 2013;369(25):2391–405.
Klampfl T, Gisslinger H, Harutyunyan AS, et al. Somatic mutations of calreticulin in myeloproliferative neoplasms. Med: N Engl J; 2013.
Anderson AL, Duncombe AS, Hughes M, et al. Environmental, lifestyle, and familial/ethnic factors associated with myeloproliferative neoplasms. Am J Hematol. 2011;2011(87):175–82.
Bagguley T, Roman E, Bolton E, Oliver S. Haematological malignancies and cancer registration in England quality appraisal comparing data from the national cancer data repository (NCDR) with the population-based Haematological Malignancy Research Network (HMRN). 2012.
Selinger HA, Ma X. Jakking up tumor registry reporting of the myeloproliferative neoplasms. Am J Hematol. 2009;84(2):124–6.
Rollison DE, Howlader N, Smith MT, et al. Epidemiology of myelodysplastic syndromes and chronic myeloproliferative disorders in the United States, 2001–2004, using data from the NAACCR and SEER programs. Blood. 2008;112(1):45–52.
López-Gómez M, Malmierca E, de Górgolas M, Casado E. Cancer in developing countries: the next most preventable pandemic. The global problem of cancer. Crit Rev Oncol Hematol. 2013;88(1):117–22.
Arkin DMP, Ray FB, Erlay JF, Isani PP. Mini review estimating the world cancer burden. Globocan. 2001;156(May):153–6.
Jemal A, Bray F, Center MM, et al. Global cancer statistics. CA Cancer J Clin. 1999;49(2):33–64.
Mystakidou K, Parpa E, Tsilika E, Katsouda E, Vlahos L. Cancer information disclosure in different cultural contexts. Support Care Cancer. 2004;12:147–54.
Mosconi P, Meyerowitz BE, Liberati MC. Disclosure of breast cancer diagnosis: patient and physician reports. Ann Oncol. 1991;2:273–80.
Jenkins V, Solis-Trapala I, Langridge C, Catt S, Talbot DC, Fallowfield LJ. What oncologists believe they said and what patients believe they heard: an analysis of phase 1 trial discussions. J Clin Oncol. 2011;29(1):61–8.
Corli O, Apolone G, Pizzuto M, Cesaris L, Cozzolino, Orsi L, Enterri L. Illness awareness in terminal cancer patients: an Italian study. Palliat Med. 2009;23:354–9.
Vos MS, de Haes JCJM. Denial in cancer patients, an explorative review. Psycho-Oncology. 2007;16:12–25.
Husson O, Denollet J, Oerlemans S, Mols F. Satisfaction with information provision in cancer patients and the moderating effect of type D personality. Pscho-Oncology. 2013;22:2124–32.