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

References

• CampbellPJGreenARThe myeloproliferative disordersN Engl J Med2006355232452246617151367
   PubMed Web of Science ®Google Scholar
• HultkranzMKristinssonSYAnderssonTMPatterns of survival among patients with myeloproliferative neoplasm diagnosed in Sweden from 1973 to 2008: a population-based studyJ Clin Oncol201230242995300122802311
   PubMed Web of Science ®Google Scholar
• ThielenNVisserOOssenkoppeleGJanssenJChronic myeloid leukemia in the Netherlands: a population-based study on incidence, treatment, and survival in 3585 patients from 1989–2012Eur J Haemtol2016972145154
   PubMed Web of Science ®Google Scholar
• BarosiGRostiVBonettiEEvidence that prefibrotic myelofibrosis is aligned along a clinical and biological continuum featuring primary myelofibrosisPLoS One201274e3563122536419
   PubMed Web of Science ®Google Scholar
• HasselbalchHCBjørnMEMPNs as inflammatory diseases: the evidence, consequences, and perspectivesMediators Inflamm2015201510247626604428
   PubMed Web of Science ®Google Scholar
• SawyersCLChronic myeloid leukemiaN Engl J Med1999340171330134010219069
   PubMed Web of Science ®Google Scholar
• KantarjianHMDixonDKeatingMJCharacteristics of accelerated disease in chronic myelogenous leukemiaCancer1988617144114463162181
   PubMed Web of Science ®Google Scholar
• VannucchiAMGuglielmelliPTefferiAAdvances in understanding and management of myeloproliferative neoplasmsCA Cancer J Clin200959317119119369682
   PubMed Web of Science ®Google Scholar
• BarbuiTBarosiGBirgegaardGPhiladelphia-negative classical myeloproliferative neoplasms: critical concepts and management recommendations from European LeukemiaNetJ Clin Oncol201129676177021205761
   PubMed Web of Science ®Google Scholar
• BjörkholmMOhmLElorantaSSucces story of targeted therapy in chronic myeloid leukemia: a population-based study of patients diagnosed in Sweden from 1973 to 2008J Clin Oncol201129182514252021576640
   PubMed Web of Science ®Google Scholar
• JabbourEKantarjianHChronic myeloid leukemia: 2016 Update on diagnosis, therapy, and monitoringAm J Hematol201691225226526799612
   PubMed Web of Science ®Google Scholar
• KiladjianJJGiraudierSCassinatBInterferon-alpha for the therapy of myeloproliferative neoplasms: targeting the malignant cloneLeukemia201630477678126601783
   PubMed Web of Science ®Google Scholar
• HasselbalchHCSilverRTInterferon in polycythemia vera and related neoplasms. Can it become the treatment of choice without a randomized trial?Exp Rev Hematol201584439445
   PubMed Web of Science ®Google Scholar
• MesaRScherberRMGeyerHLReducing symptom burden in patients with myeloproliferative neoplasms in the era of Janus Kinas InhibitorsLeuk Lymphoma20155671989199925644746
   PubMed Web of Science ®Google Scholar
• HarrisonCNVannucchiAMKiladjianJJLong-term findings from COMFORT-II, a phase 3 study of ruxolitinib vs best available therapy for myelofibrosisLeukemia20163081701170727211272
   PubMed Web of Science ®Google Scholar
• SteinBOhSTBerenzonDPolycythemia vera: an appraisal of the biology and management 10 years after the discovery of JAK2 V617FJ Clin Oncol201533333953396026324368
   PubMed Web of Science ®Google Scholar
• MesaRNiblackJWadleighMThe burden of fatigue and quality of life in myeloproliferative disorders (MPDs): an international Internet-based survey of 1179 patientsCancer20071091687617123268
   PubMed Web of Science ®Google Scholar
• ScherberRDueckACJohanssonPThe myeloproliferative neoplasm symptom assessment form (MPN-SAF): international prospective validation and reliability trial in 402 patientsBlood2011118240140821536863
   PubMed Web of Science ®Google Scholar
• EmanuelRMDueckACGeyerHLMyeloproliferative neoplasm (MPN) symptoms assessment form total symptom score: prospective international assessment of an abbreviated symptom burden scoring system among patients with MPNsJ Clin Oncol201230334098410323071245
   PubMed Web of Science ®Google Scholar
• JohanssonPMesaRScherberRAssociation between quality of life and clinical parameters in patients with myeloproliferative neoplasmsLeuk Lymphoma201253344144421883029
   PubMed Web of Science ®Google Scholar
• AbelssonJAndréassonBSamuelssonJPatients with polycythemia vera have worst impairment of quality of life among patients with newly diagnosed myeloproliferative neoplasmsLeuk Lymphoma201354102226223023398206
   PubMed Web of Science ®Google Scholar
• MitraDKayeJAPiecoroLTSymptom burden and splenomegaly in patients with myelofibrosis in the United States: a retrospective medical record reviewCancer Med20132688989824403262
   PubMed Web of Science ®Google Scholar
• SiegelFPTaucherJPetridesPEAquagenic pruritus in polycythaemia vera: characteristics and influence on quality of life in 441 patientsAm J Hematol201388866566923657863
   PubMed Web of Science ®Google Scholar
• HarrisonCNMesaRAKiladjianJJHealth-related quality of life and symptoms in patients with myelofibrosis treated with ruxolitinib versus best available therapyBr J Haematol2013162222923923672349
   PubMed Web of Science ®Google Scholar
• GeyerHLScherberRMDueckACDistinct clustering of symptomatic burden among myeloproliferative neoplasm patients: retrospective assessment in 1470 patientsBlood2014123243803381024553173
   PubMed Web of Science ®Google Scholar
• SteinBLMoliternoARTiuRVPolycythemia vera disease burden: contributing factors, impact on quality of life, and merging treatment optionsAnn Hematol201493121965197625270596
   PubMed Web of Science ®Google Scholar
• MesaRVerstovsekSKiladjianJJChanges in quality of life and disease-related symptoms in patients with polycythemia vera receiving ruxolitinib or standard therapyEur J Haematol201697219220026608702
   PubMed Web of Science ®Google Scholar
• AndersonLAJamesGDuncombeASMyeloproliferative neoplasm patient symptom burden and quality of life: evidence of significant impairment compared to controlsAm J Hematol2015901086487026113113
   PubMed Web of Science ®Google Scholar
• ScherberRMKosiorekHESenyakZComprehensively understanding fatigue in patients with myeloproliferative neoplasmsCancer2016122347748526670597
   PubMed Web of Science ®Google Scholar
• MesaRMillerCBThyneMMyeloproliferative neoplasms (MPNs) have a significant impact on patients’ overall health and productivity: the Landmark surveyBMC Cancer20161616726922064
   PubMed Web of Science ®Google Scholar
• GeyerHScherberRKosiorekHSymptomatic profiles of patients with polycythemia vera: implications of inadequately controlled diseaseJ Clin Oncol201634215115926598745
   PubMed Web of Science ®Google Scholar
• EfficaceFBaccaraniMBrecciaMHealth-related quality of life in chronic myeloid leukemia patients receiving long-term therapy with imatinib compared with the general populationBlood2011118174554456021750313
   PubMed Web of Science ®Google Scholar
• TraskPCCellaDBessonNKellyVMassziTKimDWHealth-related quality of life of bosutinib (SKI-606) in imatinib-resistant or imatinib-intolerant chronic phase chronic myeloid leukemiaLeuk Res201236443844222036634
   PubMed Web of Science ®Google Scholar
• EfficaceFCocksKBrecciaMTime for a new era in the evaluation of targeted therapies for patients with chronic myeloid leukemia: inclusion of quality of life and other patient-reported outcomesCrit Rev Oncol Hematol201281212313521435899
   PubMed Web of Science ®Google Scholar
• PhilipsKMPinilla-IbarzJSotomayorEQuality of life in patients with chronic myeloid leukemia treated with tyrosine kinase inhibitors: a controlled comparisonSupport Care Cancer20132141097110323179489
   PubMed Web of Science ®Google Scholar
• EfficaceFBaccaraniMBrecciaMChronic fatigue is the most important factor limiting health-related quality of life of chronic myeloid leukemia patients treated with imatinibLeukemia20132771511151923417029
   PubMed Web of Science ®Google Scholar
• TraskPCCellaDPowellCReismanAWhiteleyJKellyVHealth-related quality of life in chronic myeloid leukemiaLeuk Res201337191323116602
   PubMed Web of Science ®Google Scholar
• GuérinAChenLIonescu-IttuRImpact of low-grade adverse events on health-related quality of life in adult patients receiving imatinib or nilotinib for newly diagnosed Philadelphia chromosome positive chronic myelogenous leukemia in chronic phaseCurr Med Res2014301123172328
   PubMed Web of Science ®Google Scholar
• MoXDJiangQXuLPHealth-related quality of life of patients with newly diagnosed chronic myeloid leukemia treated with allogeneic hematopoietic SCT versus imatinibBone Marrow Transplant201449457658024442252
   PubMed Web of Science ®Google Scholar
• CellaDNowinskiCJFrankfurtOThe impact of symptom burden on patient quality of life in chronic myeloid leukemiaOncology201487313314725012261
   PubMed Web of Science ®Google Scholar
• KekäleMPeltoniemiMAireksinenMPatient-reported adverse drug reactions and their influence on adherence and quality of life of chronic myeloid leukemia patients on peroral tyrosine kinase inhibitor treatmentPatient Prefer Adherence201591733174026677317
   PubMed Web of Science ®Google Scholar
• ErlangsenAFedyszynIDanish nationwide registers for public health and health-related researchScand J Public Health201543433333925759376
   PubMed Web of Science ®Google Scholar
• SchmidtMSchmidtSAJSandegaardJLEhrensteinVPedersenLSørensenHTThe Danish National Patient Registry: a review of content, data quality, and research potentialClin Epidemiol2015744949026604824
   PubMed Web of Science ®Google Scholar
• PedersenCBThe Danish civil registration systemScand J Public Health201139Suppl 7222521775345
   PubMed Web of Science ®Google Scholar
• SchmidtMPedersenLSoerensenHTThe Danish civil registration system as a tool in epidemiologyEur J Epidemiol201429854154924965263
   PubMed Web of Science ®Google Scholar
• QualityMetricsShort form 36 health survey Available from: http://www.sf-36.org/tools/SF36.shtmlAccessed October 7, 2016
   Google Scholar
• MendozaTRWangXSCleelandCSThe rapid assessment of fatigue severity in cancer patients: use of the Brief Fatigue InventoryCancer19998551186119610091805
   PubMed Web of Science ®Google Scholar
• SmetsEMAGarssonBBonkeBDe HaesJEThe multidimensional fatigue inventory (MFI) psychometric qualities of an instrument to assess fatigueJ Psychosom Res19953933153257636775
   PubMed Web of Science ®Google Scholar
• ZigmondASSnaithRPThe hospital anxiety and depression scaleActa psychiatr Scand19836763613706880820
   PubMed Web of Science ®Google Scholar
• European Organisation for Research and Treatment of CancerEuropean Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 Available from: http://groups.eortc.be/qolAccessed October 7, 2016
   Google Scholar
• WildDGroveAMartinMPrinciples 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 adaptationValue Health2005829410415804318
   PubMed Web of Science ®Google Scholar
• JuulTPetersenMAHolznerBLaurbergSChristensenPGrønvoldMDanish population-based reference data for the EORTC QLQ C-30: associations with gender, age and morbidityQual Life Res20142382183219324676897
   PubMed Web of Science ®Google Scholar
• CharlsonMEPompeiPAlesKLMacKenzieCRA new method of classifying prognostic comorbidity in longitudinal studies: development and validationJ Chronic Dis19874053733833558716
   PubMedGoogle Scholar
• ThygesenSKChristiansenCFChristensenSLashTLSørensenHTThe predictive value of ICD-10 diagnostic coding used to assess Charlson comorbidity index conditions in the population-based Danish National Registry of PatientsBMC Med Res Methodol2011118321619668
   PubMed Web of Science ®Google Scholar
• ChristensenAIEkholmOGlümerCThe Danish National Health Survey 2010. Study design and respondent characteristicsScand J Publ Health2012404391397
   PubMed Web of Science ®Google Scholar
• Statistics Denmark Available from: www.danmarksstatistik.dkAccessed October 7, 2016
   Google Scholar
• The National Committee on Health Research Ethics Available from: www.dnvk.dkAccessed October 7, 2016
   Google Scholar