{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T12:16:34Z","timestamp":1780575394095,"version":"3.54.1"},"reference-count":55,"publisher":"MDPI AG","issue":"12","license":[{"start":{"date-parts":[[2020,11,28]],"date-time":"2020-11-28T00:00:00Z","timestamp":1606521600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100007444","name":"Einar Willumsen Foundation","doi-asserted-by":"publisher","award":["unknown"],"award-info":[{"award-number":["unknown"]}],"id":[{"id":"10.13039\/100007444","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Frimodt-Heineke Foundation","award":["unknown"],"award-info":[{"award-number":["unknown"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Previous studies have clarified that many patients with Philadelphia-negative myeloproliferative neoplasms (MPNs) have burdensome symptom profiles and accordingly impaired functioning and quality of life (QoL). In Denmark, all MPN patients are affiliated with public hospitals and because of a healthcare system financed by taxpayers these patients do not have any financial costs related to the hematological disease. Diagnoses are recorded for all patients in hospitals, and diagnosis codes are communicated to the National Patient Register (NPR). Owing to this, it was possible to contribute to the elucidation of Philadelphia-negative MPN patients\u2019 health-related quality of life (HRQoL), by conducting a nationwide, population-based, cross-sectional HRQoL survey of these patients with cost-free access to the best available, suitable medical treatment. The survey contained validated questionnaires covering functioning, symptom burden, symptom profile, QoL, and additional questions on lifestyle. Information on comorbid diagnoses was obtained from the NPR. The participants\u2019 HRQoL was compared to the general population. Moreover, differences in HRQoL across essential thrombocythemia, polycythemia vera, myelofibrosis, and unclassifiable MPN participants were investigated, adjusted for age, sex, comorbidity, and lifestyle. To the best of our knowledge this is the first survey of HRQoL in patients with unclassifiable MPN. A total of 2228 Philadelphia-negative MPN patients participated. The participants reported their HRQoL to be inferior to the general population, but the difference was minor. The differences in HRQoL across groups of participants with different MPN subtypes were subtle. Fatigue and sexual problems were prevalent and burdensome. Overall, participants reported a slightly healthier lifestyle compared to the general population.<\/jats:p>","DOI":"10.3390\/cancers12123565","type":"journal-article","created":{"date-parts":[[2020,11,29]],"date-time":"2020-11-29T21:55:31Z","timestamp":1606686931000},"page":"3565","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":19,"title":["Health-Related Quality of Life in Patients with Philadelphia-Negative Myeloproliferative Neoplasms: A Nationwide Population-Based Survey in Denmark"],"prefix":"10.3390","volume":"12","author":[{"given":"Nana","family":"Brochmann","sequence":"first","affiliation":[{"name":"Department of Hematology, Zealand University Hospital, 4000 Roskilde, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esben Meulengracht","family":"Flachs","sequence":"additional","affiliation":[{"name":"Department of Occupational and Environmental Medicine, Bispebjerg University Hospital, 2400 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne Illemann","family":"Christensen","sequence":"additional","affiliation":[{"name":"National Institute of Public Health, University of Southern Denmark, 1455 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marie","family":"Bak","sequence":"additional","affiliation":[{"name":"Department of Hematology, Zealand University Hospital, 4000 Roskilde, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christen Lykkegaard","family":"Andersen","sequence":"additional","affiliation":[{"name":"Department of Hematology, University Hospital of Copenhagen at Rigshospitalet, 2100 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4134-1173","authenticated-orcid":false,"given":"Knud","family":"Juel","sequence":"additional","affiliation":[{"name":"National Institute of Public Health, University of Southern Denmark, 1455 Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ann-Dorthe","family":"Zwisler","sequence":"additional","affiliation":[{"name":"Danish Knowledge Centre for Rehabilitation and Palliative Care, University of Southern Denmark and Odense University Hospital, 5800 Nyborg, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2020,11,28]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"372","DOI":"10.1182\/blood.V6.4.372.372","article-title":"Some speculations on the myeloproliferative syndromes","volume":"118","author":"Dameshek","year":"1951","journal-title":"Blood"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"2391","DOI":"10.1182\/blood-2016-03-643544","article-title":"The 2016 revision to the World Health Organization classification of myeloid neoplasms and acute leukemia","volume":"127","author":"Arber","year":"2016","journal-title":"Blood"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"761","DOI":"10.1200\/JCO.2010.31.8436","article-title":"Philadelphia-negative classical myeloproliferative neoplasms: Critical concepts and management recommendations from European LeukemiaNet","volume":"29","author":"Barbui","year":"2011","journal-title":"J. Clin. Oncol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"2452","DOI":"10.1056\/NEJMra063728","article-title":"The myeloproliferative disorders","volume":"355","author":"Campbell","year":"2006","journal-title":"N. Engl. J. Med."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1111\/bjh.14382","article-title":"The efficacy and safety of continued hydroxycarbamide therapy versus switching to ruxolitinib in patients with polycythaemia vera: A randomized, double-blind, double-dummy, symptom study (RELIEF)","volume":"176","author":"Mesa","year":"2017","journal-title":"Br. J. Haemtol."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"1481","DOI":"10.1080\/10428194.2016.1246733","article-title":"The potential role of hematocrit control on symptom burden among polycythemia vera patients: Insights from the CYTO-PV and MPN-SAF patient cohorts","volume":"58","author":"Scherber","year":"2017","journal-title":"Leuk. Lymphoma"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"85","DOI":"10.3324\/haematol.2016.149559","article-title":"Associations between gender, disease features and symptom burden in patients with myeloproliferative neoplasms: An analysis by the MPN QOL International Working Group","volume":"102","author":"Geyer","year":"2017","journal-title":"Haematologica"},{"key":"ref_8","doi-asserted-by":"crossref","unstructured":"Mesa, R., Miller, C.B., Thyne, M., Mangan, J., Goldberger, S., Fazal, S., Ma, X., Wilson, W., Paranagama, D.C., and Dubinski, D.G. (2016). Myeloproliferative neoplasms (MPNs) have a significant impact on patients\u00b4 overall health and productivity: The MPN landmark survey. BMC Cancer, 16.","DOI":"10.1186\/s12885-016-2208-2"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"1888","DOI":"10.1002\/cncr.30013","article-title":"The role of sexuality symptoms in myeloproliferative neoplasm symptom burden and quality of life: An analysis by the MPN QOL international study group","volume":"122","author":"Geyer","year":"2016","journal-title":"Cancer"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1200\/JCO.2015.62.9337","article-title":"Symptomatic profiles of patients with polycythemia vera: Implications of inadequately controlled disease","volume":"34","author":"Geyer","year":"2016","journal-title":"J. Clin. Oncol."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"1701","DOI":"10.1038\/leu.2016.148","article-title":"Long-term findings from COMFORT-II, a phase 3 study of ruxolitinib vs best available therapy for myelofibrosis","volume":"30","author":"Harrison","year":"2016","journal-title":"Leukemia"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"192","DOI":"10.1111\/ejh.12707","article-title":"Changes in quality of life and disease-related symptoms in patients with polycythemia vera receiving ruxolitinib or standard therapy","volume":"97","author":"Mesa","year":"2016","journal-title":"Eur. J. Haematol."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"477","DOI":"10.1002\/cncr.29753","article-title":"Comprehensively understanding fatigue in patients with myeloproliferative neoplasms","volume":"122","author":"Scherber","year":"2016","journal-title":"Cancer"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"864","DOI":"10.1002\/ajh.24098","article-title":"Myeloproliferative neoplasm patient symptom burden and quality of life: Evidence of significant impairment compared to controls","volume":"90","author":"Anderson","year":"2015","journal-title":"Am. J. Hematol."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"1989","DOI":"10.3109\/10428194.2014.983098","article-title":"Reducing symptom burden in patients with myeloproliferative neoplasms in the era of Janus kinase inhibitors","volume":"56","author":"Mesa","year":"2015","journal-title":"Leuk. Lymphoma"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"3953","DOI":"10.1200\/JCO.2015.61.6474","article-title":"Polycythemia vera: An appraisal of the biology and management 10 years after the discovery of JAK2 V617F","volume":"33","author":"Stein","year":"2015","journal-title":"J. Clin. Oncol."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"3803","DOI":"10.1182\/blood-2013-09-527903","article-title":"Distinct clustering of symptomatic burden among myeloproliferative neoplasm patient: Retrospective assessment in 1470 patients","volume":"123","author":"Geyer","year":"2014","journal-title":"Blood"},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"1965","DOI":"10.1007\/s00277-014-2205-y","article-title":"Polycythemia vera disease burden: Contributing factors, impact on quality of life, and merging treatment options","volume":"93","author":"Stein","year":"2014","journal-title":"Ann. Hematol."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"2226","DOI":"10.3109\/10428194.2013.766732","article-title":"Patients with polycythemia vera have worst impairment of quality of life among patients with newly diagnosed myeloproliferative neoplasms","volume":"54","author":"Abelsson","year":"2013","journal-title":"Leuk. Lymphoma"},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"889","DOI":"10.1002\/cam4.136","article-title":"Symptom burden and splenomegaly in patients with myelofibrosis in the United States: A retrospective medical record review","volume":"2","author":"Mitra","year":"2013","journal-title":"Cancer Med."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"665","DOI":"10.1002\/ajh.23474","article-title":"Aquagenic pruritus in polycythaemia vera: Characteristics and influence on quality of life in 441 patients","volume":"88","author":"Siegel","year":"2013","journal-title":"Am. J. Hematol."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"229","DOI":"10.1111\/bjh.12375","article-title":"Health-related quality of life and symptoms in patients with myelofibrosis treated with ruxolitinib versus best available therapy","volume":"162","author":"Harrison","year":"2013","journal-title":"Br. J. Haematol."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"4098","DOI":"10.1200\/JCO.2012.42.3863","article-title":"Myeloproliferative neoplasm (MPN) symptoms assessment form total symptom score: Prospective international assessment of an abbreviated symptom burden scoring system among patients with MPNs","volume":"30","author":"Emanuel","year":"2012","journal-title":"J. Clin. Oncol."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"441","DOI":"10.3109\/10428194.2011.619608","article-title":"Association between quality of life and clinical parameters in patients with myeloproliferative neoplasms","volume":"53","author":"Johansson","year":"2012","journal-title":"Leuk. Lymphoma"},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"527","DOI":"10.1007\/s00277-011-1341-x","article-title":"Quality of life en elderly patients with essential thrombocythemia. An Italian multicentre study","volume":"91","author":"Oliva","year":"2012","journal-title":"Ann. Hematol."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"401","DOI":"10.1182\/blood-2011-01-328955","article-title":"The myeloproliferative neoplasm symptom assessment form (MPN-SAF): International prospective validation and reliability trial in 402 patients","volume":"118","author":"Scherber","year":"2011","journal-title":"Blood"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"68","DOI":"10.1002\/cncr.22365","article-title":"The burden of fatigue and quality of life in myeloproliferative disorders (MPDs)","volume":"109","author":"Mesa","year":"2007","journal-title":"Cancer"},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"449","DOI":"10.2147\/CLEP.S91125","article-title":"The Danish National Patient Registry: A review of content, data quality, and research potential","volume":"7","author":"Schmidt","year":"2015","journal-title":"Clin. Epidemiol."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"541","DOI":"10.1007\/s10654-014-9930-3","article-title":"The Danish Civil Registration System as a tool in epidemiology","volume":"29","author":"Schmidt","year":"2014","journal-title":"Eur. J. Epidemiol."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"141","DOI":"10.2147\/CLEP.S117587","article-title":"A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): Survey design and characteristics of respondents and nonrespondents","volume":"9","author":"Brochmann","year":"2017","journal-title":"Clin. Epidemiol."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"550","DOI":"10.1111\/ejh.13048","article-title":"Association between fatigue, physical activity, and QoL in patients with myeloproliferative neoplasms","volume":"100","author":"Larsen","year":"2018","journal-title":"Eur. J. Hematol."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"23","DOI":"10.2147\/CLEP.S162688","article-title":"Anixiety and depression in patients with Philadelphia-negative myeloproliferative neoplasms: A nationwide population-based survey in Denmark","volume":"11","author":"Brochmann","year":"2019","journal-title":"Clin. Epidemiol."},{"key":"ref_33","doi-asserted-by":"crossref","unstructured":"Christensen, S.F., Scherber, R.M., Brochmann, N., Goros, M., Gelfond, J., Andersen, C.L., Flachs, E.M., and Mesa, R. (2020). Body Mass Index and Total Symptom Burden in Myeloproliferative Neoplasms Discovery of a U-shaped Association. Cancers, 12.","DOI":"10.3390\/cancers12082202"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"473","DOI":"10.1097\/00005650-199206000-00002","article-title":"The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection","volume":"30","author":"Ware","year":"1992","journal-title":"Med. Care"},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"365","DOI":"10.1093\/jnci\/85.5.365","article-title":"The European Organization for Research and Treatment of Cancer QoL-C30: A quality-of-life instrument for use in international clinical trials in oncology","volume":"85","author":"Aaronson","year":"1993","journal-title":"J. Natl. Cancer Inst."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"1186","DOI":"10.1002\/(SICI)1097-0142(19990301)85:5<1186::AID-CNCR24>3.0.CO;2-N","article-title":"The rapid assessment of fatigue severity in cancer patients: Use of the Brief Fatigue Inventory","volume":"85","author":"Mendoza","year":"1999","journal-title":"Cancer"},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"315","DOI":"10.1016\/0022-3999(94)00125-O","article-title":"The multidimensional fatigue inventory (MFI); psychometric qualities of an instrument to assess fatigue","volume":"39","author":"Smets","year":"1995","journal-title":"J. Psychosom. Res."},{"key":"ref_38","doi-asserted-by":"crossref","unstructured":"(2011). Cocks, K.; King, M.T.; Velikova, G.; St. James, M.M.; Fayers, P.M.; Brown, J.M. Evidence-Based Guidelines for Determination of Sample Size and Interpretation of the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. J. Clin. Oncol., 29, 89\u201396.","DOI":"10.1200\/JCO.2010.28.0107"},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"555","DOI":"10.1007\/BF00439229","article-title":"The interpretation of scores from EORTC quality of life questionnaire QLQ C-30","volume":"5","author":"King","year":"1996","journal-title":"Qual. Life Res."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1200\/JCO.1998.16.1.139","article-title":"Interpreting the significance of changes in health-related quality-of-life scores","volume":"16","author":"Osoba","year":"1998","journal-title":"J. Clin. Oncol."},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"879","DOI":"10.1038\/bjc.2012.333","article-title":"Alcohol drinking, tobacco smoking and subtypes of haematological malignancies in the UK million women study","volume":"107","author":"Kroll","year":"2012","journal-title":"Br. J. Cancer"},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"1741","DOI":"10.1002\/ijc.28492","article-title":"Anthropometric, medical history and lifestyle risk factors for myeloproliferative neoplasms in the Iowa women\u00b4s health study cohort","volume":"134","author":"Leal","year":"2014","journal-title":"Int. J. Cancer"},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1111\/ejh.12684","article-title":"Smoking and Philadelphia-negative chronic myeloproliferative neoplasms","volume":"97","author":"Soerensen","year":"2016","journal-title":"Eur. J. Haematol."},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"1507","DOI":"10.1016\/S0277-9536(99)00045-3","article-title":"Integrating response shift into health-related quality of life research: A theoretical model","volume":"48","author":"Sprangers","year":"1999","journal-title":"Soc. Sci. Med."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"737","DOI":"10.1016\/j.leukres.2006.12.002","article-title":"Primary myelofibrosis (PMF), post polycythemia vera myelofibrosis (post-PV MF), post essential thrombocythemia myelofibrosis (post-PV MF), blast phase PMF (PMF-BP): Consensus on terminology by the international working group for myelofibrosis research and treatment (IWG-MRT)","volume":"31","author":"Mesa","year":"2007","journal-title":"Leuk. Res."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"102476","DOI":"10.1155\/2015\/102476","article-title":"MPNs as inflammatory diseases: The evidence, consequences and perspectives","volume":"2015","author":"Hasselbalch","year":"2015","journal-title":"Mediat. Inflamm."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"771","DOI":"10.1016\/j.exphem.2012.05.011","article-title":"Gene expression profiling with principal component analysis depicts the biological continuum from essential thrombocythemia over polycythemia vera to myelofibrosis","volume":"40","author":"Skov","year":"2012","journal-title":"Exp. Hematol."},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"94","DOI":"10.1111\/j.1524-4733.2005.04054.x","article-title":"Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR task force for translation and cultural adaptation","volume":"8","author":"Wild","year":"2005","journal-title":"Value Health"},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"1057","DOI":"10.1038\/s41375-018-0077-1","article-title":"Philadelphia chromosome-negative classical myeloproliferative neoplasms: Revised management recommendations from European LeukemiaNet","volume":"32","author":"Barbui","year":"2018","journal-title":"Leukemia"},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"449","DOI":"10.1002\/cncr.30325","article-title":"Differences in treatment goals and perception of symptom burden between patients with myeloproliferative neoplasms (MPNs) and hematologists\/oncologists in the United States: Findings from the MPN Landmark survey","volume":"123","author":"Mesa","year":"2017","journal-title":"Cancer"},{"key":"ref_51","unstructured":"(2020, June 28). Statistics Denmark. Available online: www.danmarksstatistik.dk."},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"373","DOI":"10.1016\/0021-9681(87)90171-8","article-title":"A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation","volume":"40","author":"Charlson","year":"1987","journal-title":"J. Chronic Dis."},{"key":"ref_53","doi-asserted-by":"crossref","unstructured":"Thygesen, S.K., Christiansen, C.F., Christensen, S., Lash, T.L., and Soerensen, H.T. (2011). The predictive value of ICD-10 diagnostic coding used to assess Charlson comorbidity index conditions in the population-based Danish National Registry of Patients. BMC Med. Res. Methodol., 11.","DOI":"10.1186\/1471-2288-11-83"},{"key":"ref_54","doi-asserted-by":"crossref","first-page":"391","DOI":"10.1177\/1403494812451412","article-title":"The Danish National Health Survey 2010. Study design and respondent characteristics","volume":"40","author":"Christensen","year":"2012","journal-title":"Scand. J. Public Health"},{"key":"ref_55","doi-asserted-by":"crossref","first-page":"2183","DOI":"10.1007\/s11136-014-0675-y","article-title":"Danish population-based reference data for the EORTC QLQ C-30: Associations with gender, age and morbidity","volume":"23","author":"Juul","year":"2014","journal-title":"Qual. Life Res."}],"container-title":["Cancers"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2072-6694\/12\/12\/3565\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T10:39:02Z","timestamp":1760179142000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2072-6694\/12\/12\/3565"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,11,28]]},"references-count":55,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2020,12]]}},"alternative-id":["cancers12123565"],"URL":"https:\/\/doi.org\/10.3390\/cancers12123565","relation":{},"ISSN":["2072-6694"],"issn-type":[{"value":"2072-6694","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,11,28]]}}}