Immune thrombocytopenia: improving quality of life and patient outcomes

References

• RodeghieroFStasiRGernsheimerTStandardization of terminology, definitions and outcome criteria in immune thrombocytopenic purpura of adults and children: report from an international working groupBlood2009113112386239319005182
   PubMed Web of Science ®Google Scholar
• ProvanDStasiRNewlandACInternational consensus report on the investigation and management of primary immune thrombocytopeniaBlood2010115216818619846889
   PubMed Web of Science ®Google Scholar
• HillQAImmune thrombocytopenia—in defence of the platelet countBr J Haematol2018182112813028480957
   PubMed Web of Science ®Google Scholar
• SchoonenWMKuceraGCoalsonJEpidemiology of immune thrombocytopenic purpura in the General Practice Research DatabaseBr J Haematol2009145223524419245432
   PubMed Web of Science ®Google Scholar
• GeorgeJNWoolfSHRaskobGEIdiopathic thrombocytopenic purpura: a practice guideline developed by explicit methods for the American Society of HematologyBlood19968813408704187
   PubMed Web of Science ®Google Scholar
• YongMSchoonenWMLiLEpidemiology of paediatric immune thrombocytopenia in the General Practice Research DatabaseBr J Haematol2010149685586420377590
   PubMed Web of Science ®Google Scholar
• CooperNState of the art—how I manage immune thrombocytopeniaBr J Haematol20171771395428295192
   PubMed Web of Science ®Google Scholar
• NørgaardMJensenAØEngebjergMCLong-term clinical outcomes of patients with primary chronic immune thrombocytopenia: a Danish population-based cohort studyBlood2011117133514352021263148
   PubMed Web of Science ®Google Scholar
• PortieljeJEWestendorpRGKluin-NelemansHCBrandAMorbidity and mortality in adults with idiopathic thrombocytopenic purpuraBlood20019792549255411313240
   PubMed Web of Science ®Google Scholar
• KirschMKlaassenRJde GeestSMatzdorffAIonovaTDobbelsFUnderstanding the importance of using patient-reported outcome measures in patients with immune thrombocytopeniaSemin Hematol201350Suppl 1S39S4223664515
   PubMedGoogle Scholar
• StasiRNewlandACITP: a historical perspectiveBr J Haematol2011153443745021466538
   PubMed Web of Science ®Google Scholar
• BarnardDWoloskiMFeenyDDevelopment of disease-specific health-related quality-of-life instruments for children with immune thrombocytopenic purpura and their parentsJ Pediatr Hematol Oncol2003251566212544774
   PubMed Web of Science ®Google Scholar
• KlaassenRJYoungNLHealth-related quality of life outcomes for patients with immune thrombocytopenic purpuraAnn Hematol201089Suppl 1515420461516
   PubMed Web of Science ®Google Scholar
• MathiasSDGaoSKRutsteinMSnyderCFWuAWCellaDEvaluating clinically meaningful change on the ITP-PAQ: preliminary estimates of minimal important differencesCurr Med Res Opin200925237538319192982
   PubMed Web of Science ®Google Scholar
• ZhangHWangLQuanMHealth-related quality of life in children with chronic immune thrombocytopenia in ChinaHealth Qual Life Outcomes2016144526979950
   PubMed Web of Science ®Google Scholar
• EfficaceFMandelliFFaziPHealth-related quality of life and burden of fatigue in patients with primary immune thrombocytopenia by phase of diseaseAm J Hematol20169110995100127351715
   PubMed Web of Science ®Google Scholar
• ZhouZYangLChenZHealth-related quality of life measured by the Short Form 36 in immune thrombocytopenic purpura: a cross-sectional survey in ChinaEur J Haematol200778651852317419740
   PubMed Web of Science ®Google Scholar
• McMillanRBusselJBGeorgeJNLallaDNicholJLSelf-reported health-related quality of life in adults with chronic immune thrombocytopenic purpuraAm J Hematol200883215015417722072
   PubMed Web of Science ®Google Scholar
• SnyderCFMathiasSDCellaDIsittJJWuAWYoungJHealth-related quality of life of immune thrombocytopenic purpura patients: results from a web-based surveyCurr Med Res Opin200824102767277618715526
   PubMed Web of Science ®Google Scholar
• LöflingLLinderMEkstrandCCherifHKielerHBahmanyarSPharmacological agents preceding a diagnosis of immune thrombocytopenia in adult patients developing the chronic form: a Swedish national register studyThromb Res2017160273129091809
   PubMed Web of Science ®Google Scholar
• ChengGSalehMNMarcherCEltrombopag for management of chronic immune thrombocytopenia (RAISE): a 6-month, randomised, phase 3 studyLancet2011377976339340220739054
   PubMed Web of Science ®Google Scholar
• GeorgeJNMathiasSDGoRSImproved quality of life for romiplostim-treated patients with chronic immune thrombocytopenic purpura: results from two randomized, placebo-controlled trialsBr J Haematol2009144340941519016720
   PubMed Web of Science ®Google Scholar
• KuterDJMathiasSDRummelMHealth-related quality of life in nonsplenectomized immune thrombocytopenia patients receiving romiplostim or medical standard of careAm J Hematol201287555856122460421
   PubMed Web of Science ®Google Scholar
• MathiasSDBusselJBGeorgeJNMcMillanROkanoGJNicholJLA disease-specific measure of health-related quality of life for use in adults with immune thrombocytopenic purpura: its development and validationHealth Qual Life Outcomes200751117316442
   PubMed Web of Science ®Google Scholar
• MathiasSDBusselJBGeorgeJNMcMillanROkanoGJNicholJLA disease-specific measure of health-related quality of life in adults with chronic immune thrombocytopenic purpura: psychometric testing in an open-label clinical trialClin Ther200729595096217697914
   PubMed Web of Science ®Google Scholar
• MathiasSDGaoSKMillerKLImpact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspectiveHealth Qual Life Outcomes200861318261217
   PubMed Web of Science ®Google Scholar
• SarpatwariAWatsonSErqouSHealth-related lifestyle in adults and children with primary immune thrombocytopenia (ITP)Br J Haematol2010151218919120666773
   PubMed Web of Science ®Google Scholar
• Heitink-PolléKMHavermanLAnninkKVSchepSJde HaasMBruinMCHealth-related quality of life in children with newly diagnosed immune thrombocytopeniaHaematologica20149991525153124951468
   PubMed Web of Science ®Google Scholar
• KumarMLambertMPBreakeyVSports Participation in Children and Adolescents with Immune Thrombocytopenia (ITP)Pediatr Blood Cancer201562122223222526174203
   PubMed Web of Science ®Google Scholar
• GuidryJAGeorgeJNVeselySKKennisonSMTerrellDRCorticosteroid side-effects and risk for bleeding in immune thrombocytopenic purpura: patient and hematologist perspectivesEur J Haematol200983317518219374704
   PubMed Web of Science ®Google Scholar
• SuvajdzicNZivkovicRDjunicIHealth-related quality of life in adult patients with chronic immune thrombocytopenia in SerbiaPlatelets201425646746924175579
   PubMed Web of Science ®Google Scholar
• FloresAKlaassenRJBuchananGRNeunertCEPatterns and influences in health-related quality of life in children with immune thrombocytopenia: a study from the Dallas ITP cohortPediatr Blood Cancer2017648e26405
   Web of Science ®Google Scholar
• TarantinoMDMathiasSDSnyderCFIsittJJGernsheimerTYoungJImpact of ITP on physician visits and workplace productivityCurr Med Res Opin201026231932819968458
   PubMed Web of Science ®Google Scholar
• BlattJWestonBGoldSFatigue as marker of thrombocytopenia in childhood idiopathic thrombocytopenic purpuraPediatr Hematol Oncol2010271656720121557
   PubMed Web of Science ®Google Scholar
• NewtonJLReeseJAWatsonSIFatigue in adult patients with primary immune thrombocytopeniaEur J Haematol201186542042921323737
   PubMed Web of Science ®Google Scholar
• TsukuneYKomatsuNManagement of Adult Chronic Immune Thrombocytopenia in Japan: Patient and Hematologist Perspectives from a Multi-center Cross-sectional Questionnaire SurveyIntern Med201655172379238527580537
   PubMed Web of Science ®Google Scholar
• HillQANewlandACFatigue in immune thrombocytopeniaBr J Haematol2015170214114925823426
   PubMed Web of Science ®Google Scholar
• EnnsMWBernsteinCNKroekerKThe association of fatigue, pain, depression and anxiety with work and activity impairment in immune mediated inflammatory diseasesPLoS One2018136e019897529879231
   PubMed Web of Science ®Google Scholar
• MatzdorffACArnoldGSalamaAOstermannHEberleSHummlerSAdvances in ITP—therapy and quality of life—a patient surveyPLoS One2011611e2735022096556
   PubMed Web of Science ®Google Scholar
• BertiDMoonsPDobbelsFDeusonRJanssensAde GeestSImpact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura: results of a survey of 985 patientsClin Ther20083081540155218803995
   PubMed Web of Science ®Google Scholar
• BrownTMHorblyukRVGrotzingerKMMatzdorffACPashosCLPatient-reported treatment burden of chronic immune thrombocytopenia therapiesBMC Blood Disord2012122222436142
   PubMedGoogle Scholar
• BusselJBChengGSalehMNEltrombopag for the treatment of chronic idiopathic thrombocytopenic purpuraN Engl J Med2007357222237224718046028
   PubMed Web of Science ®Google Scholar
• WongRSMSalehMNKhelifASafety and efficacy of long-term treatment of chronic/persistent ITP with eltrombopag: final results of the EXTEND studyBlood2017130232527253629042367
   PubMed Web of Science ®Google Scholar
• ArnoldDMHeddleNMCarruthersJA pilot randomized trial of adjuvant rituximab or placebo for nonsplenectomized patients with immune thrombocytopeniaBlood201211961356136222223819
   PubMed Web of Science ®Google Scholar
• KlaassenRJBlanchetteVBurkeTAQuality of life in childhood immune thrombocytopenia: international validation of the kids’ ITP toolsPediatr Blood Cancer20136019510022848040
   PubMed Web of Science ®Google Scholar
• GiordanoPLassandroGGionaFITP-QoL questionnaire for children with immune thrombocytopenia: Italian version validation’sPediatr Hematol Oncol201431653454724852656
   PubMed Web of Science ®Google Scholar
• von MackensenSNilssonCJankovicMDevelopment of a disease-specific quality of life questionnaire for children & adolescents with idiopathic thrombocytopenic purpura (ITP-QoL)Pediatr Blood Cancer2006475 Suppl68869116933256
   PubMed Web of Science ®Google Scholar
• StrulluMRakotonjanaharyJTarralEEvaluation of health related quality of life in children with immune thrombocytopenia with the PedsQL™ 4.0 Generic Core Scales: a study on behalf of the pays de Loire pediatric hematology networkHealth Qual Life Outcomes20131119324225051
   PubMed Web of Science ®Google Scholar
• MathiasSDLiXEisenMCarpenterNCrosbyRDBlanchetteVSA Phase 3, randomized, double-blind, placebo-controlled study to determine the effect of Romiplostim on health-related quality of life in children with primary immune thrombocytopenia and associated burden in their parentsPediatr Blood Cancer20166371232123727037553
   PubMed Web of Science ®Google Scholar
• GraingerJDYoungNLBlanchetteVSKlaassenRJQuality of life in immune thrombocytopenia following treatmentArch Dis Child2013981189589723956257
   PubMed Web of Science ®Google Scholar
• KlaassenRJBlanchetteVSBarnardDValidity, reliability, and responsiveness of a new measure of health-related quality of life in children with immune thrombocytopenic purpura: the kids’ ITP toolsJ Pediatr20071505510515.e117452226
   PubMed Web of Science ®Google Scholar
• MokhtarGMFaridSMShakerNMFarragKEHealth-related quality of life of Egyptian children with immune thrombocytopenia and their parentsJ Pediatr Hematol Oncol201436319419924322497
   PubMed Web of Science ®Google Scholar
• NeunertCEBuchananGRBlanchetteVRelationships among bleeding severity, health-related quality of life, and platelet count in children with immune thrombocytopenic purpuraPediatr Blood Cancer200953465265419492316
   PubMed Web of Science ®Google Scholar
• BusselJBde MiguelPGDespotovicJMEltrombopag for the treatment of children with persistent and chronic immune thrombocytopenia (PETIT): a randomised, multicentre, placebo-controlled studyLancet Haematol201528e315e32526688484
   PubMed Web of Science ®Google Scholar
• KlaassenRJMathiasSDBuchananGPilot study of the effect of romiplostim on child health-related quality of life (HRQoL) and parental burden in immune thrombocytopenia (ITP)Pediatr Blood Cancer201258339539821910213
   PubMed Web of Science ®Google Scholar
• GuoJCZhengYChenHTEfficacy and safety of thrombopoietin receptor agonists in children with chronic immune thrombocytopenia: a meta-analysisOncotarget2018967112712529467954
   PubMedGoogle Scholar
• ZilberRBortzAPYacobovichJYanivITamaryHAnalysis of health-related quality of life in children with immune thrombocytopenia and their parents using the kids’ ITP toolsJ Pediatr Hematol Oncol20123412522215093
   PubMed Web of Science ®Google Scholar
• BowerJEGanzPADesmondKAFatigue in long-term breast carcinoma survivors: a longitudinal investigationCancer2006106475175816400678
   PubMed Web of Science ®Google Scholar
• RabinDUKuterDJLiebmanHABusselJBWhat do healthcare providers ask their patients with immune thrombocytopenia?Am J Hematol201085862963120658595
   PubMed Web of Science ®Google Scholar
• BjellandIDahlAAHaugTTNeckelmannDThe validity of the Hospital Anxiety and Depression Scale. An updated literature reviewJ Psychosom Res2002522697711832252
   PubMed Web of Science ®Google Scholar
• ButtZWagnerLIBeaumontJLUse of a single-item screening tool to detect clinically significant fatigue, pain, distress, and anorexia in ambulatory cancer practiceJ Pain Symptom Manage2008351203017959345
   PubMed Web of Science ®Google Scholar
• HewlettSChalderTChoyEFatigue in rheumatoid arthritis: time for a conceptual modelRheumatology20115061004100620819797
   PubMed Web of Science ®Google Scholar
• HauberABJohnsonFRGrotzingerKMOzdemirSPatients’ benefit-risk preferences for chronic idiopathic thrombocytopenic purpura therapiesAnn Pharmacother201044347948820124463
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care ExcellenceClinical Guideline [CG186] Multiple Sclerosis in Adults: ManagementLondonNICE2014 Available from: https://www.nice.org.uk/guidance/cg186Accessed November 5, 2018
   Google Scholar
• KoornstraRHPetersMDonofrioSvan den BorneBde JongFAManagement of fatigue in patients with cancer—a practical overviewCancer Treat Rev201440679179924576643
   PubMed Web of Science ®Google Scholar
• SignorovitchJBrainskyAGrotzingerKMValidation of the FACIT-fatigue subscale, selected items from FACT-thrombocytopenia, and the SF-36v2 in patients with chronic immune thrombocytopeniaQual Life Res201120101737174421533818
   PubMed Web of Science ®Google Scholar