Known-group validity of patient-reported outcome instruments and hemophilia joint health score v2.1 in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study

References

• Centers for Disease Control and Prevention [webpage on the Internet]Data & Statistics2017 Available from: www.cdc.gov/ncbddd/hemophilia/data.htmlAccessed September 7, 2017
   Google Scholar
• SrivastavaABrewerAKMauser-BunschotenEPTreatment Guidelines Working Group on Behalf of The World Federation of HemophiliaGuidelines for the management of hemophiliaHaemophilia2013191e1e4722776238
   PubMed Web of Science ®Google Scholar
• AngeliniDKonkleBASoodSLAging among persons with hemophilia: contemporary concernsSemin Hematol2016531353926805905
   PubMed Web of Science ®Google Scholar
• CanaroMGoranova-MarinovaVBerntorpEThe ageing patient with haemophiliaEur J Haematol201594suppl 77172225560790
   PubMed Web of Science ®Google Scholar
• MazepaMAMonahanPEBakerJRRiskeBKSoucieJMUS Hemophilia Treatment Center NetworkMen with severe hemophilia in the United States: birth cohort analysis of a large national databaseBlood2016127243073308126983851
   PubMed Web of Science ®Google Scholar
• ForsythALWitkopMLambingAAssociations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO studyPatient Prefer Adherence201591549156026604708
   PubMed Web of Science ®Google Scholar
• BoehlenFGrafLBerntorpEOutcome measures in haemophilia: a systematic reviewEur J Haematol Suppl20147621524957102
   PubMedGoogle Scholar
• GlobeDYoungNLVon MackensenSBullingerMWassermanJHealth-related Quality of Life Expert Working Group of the International Prophylaxis Study GroupMeasuring patient-reported outcomes in haemophilia clinical researchHaemophilia200915484385219473425
   PubMed Web of Science ®Google Scholar
• HumphriesTJKesslerCMThe challenge of pain evaluation in haemophilia: can pain evaluation and quantification be improved by using pain instruments from other clinical situations?Haemophilia201319218118723039033
   PubMed Web of Science ®Google Scholar
• NiuXPoonJLRiskeBPhysical activity and health outcomes in persons with haemophilia BHaemophilia201420681482125156277
   PubMed Web of Science ®Google Scholar
• WitkopMLambingADivineGKachalskyERushlowDDinnenJA national study of pain in the bleeding disorders community: a description of haemophilia painHaemophilia2012183e115e11922171646
   PubMed Web of Science ®Google Scholar
• WitkopMLambingAKachalskyEDivineGRushlowDDinnenJAssessment of acute and persistent pain management in patients with haemophiliaHaemophilia201117461261921323802
   PubMed Web of Science ®Google Scholar
• NeufeldEJRechtMSabioHEffect of acute bleeding on daily quality of life assessments in patients with congenital hemophilia with inhibitors and their families: observations from the dosing observational study in hemophiliaValue Health201215691692522999142
   PubMed Web of Science ®Google Scholar
• BarryVLynchMETranDQDistress in patients with bleeding disorders: a single institutional cross-sectional studyHaemophilia2015216e456e46426179213
   PubMed Web of Science ®Google Scholar
• ShaferFSmithLVendettiNRendoPCarrMLack of seasonal variation in bleeding and patient-assessed pain patterns in patients with haemophilia B receiving on-demand therapyHaemophilia201420334935324286226
   PubMed Web of Science ®Google Scholar
• BaumgardnerJElonLAntunAPhysical activity and functional abilities in adult males with haemophilia: a cross-sectional survey from a single US haemophilia treatment centreHaemophilia201319455155723574421
   PubMed Web of Science ®Google Scholar
• HilliardPFunkSZourikianNHemophilia joint health score reliability studyHaemophilia200612551852516919083
   PubMed Web of Science ®Google Scholar
• WitkopMNeffABucknerTWSelf-reported prevalence, description and management of pain in adults with haemophilia: methods, demographics and results from the Pain, Functional Impairment, and Quality of Life (P-FiQ) studyHaemophilia201723455656528419637
   PubMed Web of Science ®Google Scholar
• HerdmanMGudexCLloydADevelopment and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)Qual Life Res201120101727173621479777
   PubMed Web of Science ®Google Scholar
• CleelandCThe Brief Pain Inventory User GuideHouston, TXMD Anderson Cancer Center2009
   Google Scholar
• CraigCLMarshallALSjostromMInternational physical activity questionnaire: 12-country reliability and validityMed Sci Sports Exerc20033581381139512900694
   PubMed Web of Science ®Google Scholar
• van GenderenFRvan MeeterenNLvan der BomJGFunctional consequences of haemophilia in adults: the development of the Haemophilia Activities ListHaemophilia200410556557115357785
   PubMed Web of Science ®Google Scholar
• van GenderenFRWestersPHeijnenLMeasuring patients’ perceptions on their functional abilities: validation of the Haemophilia Activities ListHaemophilia20061213646
   PubMed Web of Science ®Google Scholar
• WangMBattKKesslerCMInternal consistency and item-total correlation of patient-reported outcome (PRO) instruments and hemophilia joint health score v2.1 (HJHS) in US adult people with hemophilia (PWH): results from the Pain, Functional Impairment, and Quality of Life (P-FiQ) studyJ Thromb Haemost201614suppl 14826564379
   PubMed Web of Science ®Google Scholar
• KemptonCLWangMRechtMReliability of patient-reported outcome (PRO) instruments in US adult people with hemophilia (PWH): the Pain, Functional Impairment, and Quality of Life (P-FIQ) studyPatient Prefer Adherence2017
   Google Scholar
• BattKRechtMCooperDLIyerNNKemptonCLConstruct validity of patient-reported outcome instruments in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of Life (P-FIQ) studyPatient Prefer Adherence2017111369138028860720
   PubMed Web of Science ®Google Scholar
• KemptonCLRechtMNeffAImpact of pain and functional impairment in US adult people with hemophilia (PWH): patient-reported outcomes and musculoskeletal evaluation in the Pain, Functional Impairment, and Quality of Life (P-FiQ) studyBlood20161262339
   Web of Science ®Google Scholar
• GotoMTakedaniHYokotaKHagaNStrategies to encourage physical activity in patients with hemophilia to improve quality of lifeJ Blood Med20167859827274330
   PubMed Web of Science ®Google Scholar