94
Views
12
CrossRef citations to date
0
Altmetric
Original Research

Reliability of patient-reported outcome instruments in US adults with hemophilia: the Pain, Functional Impairment and Quality of life (P-FiQ) study

, , , , , , , , , & show all
Pages 1603-1612 | Published online: 19 Sep 2017

References

  • Rodriguez-MerchanECPrevention of the musculoskeletal complications of hemophiliaAdv Prev Med2012201220127122778972
  • Rodriguez-MerchanECEffects of hemophilia on articulations of children and adultsClin Orthop Relat Res19963287138653981
  • RoosendaalGMauser-BunschotenEPDe KleijnPSynovium in haemophilic arthropathyHaemophilia1998445025059873782
  • RoosendaalGLafeberFPPathogenesis of haemophilic arthropathyHaemophilia200612Suppl 311712116684006
  • MannucciPMSchutgensRESantagostinoEMauser-BunschotenEPHow I treat age-related morbidities in elderly persons with hemophiliaBlood2009114265256526319837978
  • HumphriesTJKesslerCMThe challenge of pain evaluation in haemophilia: can pain evaluation and quantification be improved by using pain instruments from other clinical situations?Haemophilia201319218118723039033
  • RileyRRWitkopMHellmanEAkinsSAssessment and management of pain in haemophilia patientsHaemophilia201117683984521645179
  • HolsteinKKlamrothRRichardsMCarvalhoMPérez-GarridoRGringeriAEuropean Haemophilia Therapy Standardization Board. Pain management in patients with haemophilia: a European surveyHaemophilia201218574375222530627
  • ShapiroACooperDLU.S. survey of surgical capabilities and experience with surgical procedures in patients with congenital haemophilia with inhibitorsHaemophilia201218340040522168829
  • BullingerMvon MackensenSFischerKPilot testing of the ‘Haemo-QoL’ quality of life questionnaire for haemophiliac children in six European countriesHaemophilia20028Suppl 2475411966854
  • von MackensenSBullingerMHaemo-QoL GroupDevelopment and testing of an instrument to assess the quality of life of children with haemophilia in Europe (Haemo-QoL)Haemophilia200410Suppl 11725
  • PollakEMuhlanHvon MackensenSBullingerMHaemo-Qol GroupThe Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophiliaHaemophilia200612438439216834738
  • BaumgardnerJElonLAntunAPhysical activity and functional abilities in adult males with haemophilia: a cross-sectional survey from a single US haemophilia treatment centreHaemophilia201319455155723574421
  • WitkopMLambingADivineGKachalskyERushlowDDinnenJA national study of pain in the bleeding disorders community: a description of haemophilia painHaemophilia2012183e115e11922171646
  • WitkopMLambingAKachalskyEDivineGRushlowDDinnenJAssessment of acute and persistent pain management in patients with haemophiliaHaemophilia201117461261921323802
  • KhawajiMAstermarkJBerntorpELifelong prophylaxis in a large cohort of adult patients with severe haemophilia: a beneficial effect on orthopaedic outcome and quality of lifeEur J Haematol201288432933522221195
  • den UijlIBiesmaDGrobbeeDFischerKTurning severe into moderate haemophilia by prophylaxis: are we reaching our goal?Blood Transfus201311336436923149144
  • ForsythALGregoryMNugentDHaemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographicsHaemophilia2014201445123902228
  • 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
  • YoungGSolemCTHoffmanKCapturing daily assessments and home treatment of congenital hemophilia with inhibitors: design, disposition, and implications of the Dosing Observational Study in Hemophilia (DOSE)J Blood Med2012313113823152717
  • RechtMNeufeldEJSharmaVRImpact of acute bleeding on daily activities of patients with congenital hemophilia with inhibitors and their caregivers and families: observations from the Dosing Observational Study in Hemophilia (DOSE)Value Health201417674474825236999
  • 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) studyBlood20151262339
  • ShroutPEFleissJLIntraclass correlations: uses in assessing rater reliabilityPsychol Bull197986242042818839484
  • CleelandCSRyanKMPain assessment: global use of the Brief Pain InventoryAnn Acad Med, Singapore19942321291388080219
  • van GenderenFRWestersPHeijnenLMeasuring patients’ perceptions on their functional abilities: validation of the Haemophilia Activities ListHaemophilia20061213646
  • CleelandCSThe Brief Pain Inventory: User GuideMD Andersen Cancer CenterHouston, Texas2009 Available from: https://www.mdanderson.org/documents/Departments-and-Divisions/Symptom-Research/BPI_UserGuide.pdfAccessed August 27, 2015
  • de Andres AresJCruces PradoLMCanos VerdechoMAValidation of the Short Form of the Brief Pain Inventory (BPI-SF) in Spanish patients with non-cancer-related painPain Pract201515764365324766769
  • EuroQol GroupEQ-5D-5L User Guide: Basic Information on How to Use the EQ-5D-5L Instrument. Version 2.1NetherlandsEuroQol Group2015 Available from: https://euroqol.org/wp-content/uploads/2016/09/EQ-5D-5L_UserGuide_2015.pdfAccessed August 27, 2015
  • NaegeliANTomaszewskiELAl SawahSPsychometric validation of the Brief Pain Inventory-Short Form in patients with systemic lupus erythematosus in the United StatesLupus201524131377138326038345
  • WareJUser’s Manual for the SF-36v2 Health SurveySecond editionMontreal, QC, CanadaQuality Metric Inc2007
  • CraigCLMarshallALSjostromMInternational physical activity questionnaire: 12-country reliability and validityMed Sci Sports Exerc20033581381139512900694
  • GroenWvan der NetJLacatusuAMSerbanMHeldersPJFischerKFunctional limitations in Romanian children with haemophilia: further testing of psychometric properties of the Paediatric Haemophilia Activities ListHaemophilia2013193e116e12523374095
  • van GenderenFRvan MeeterenNLvan der BomJGFunctional consequences of haemophilia in adults: the development of the Hae-mophilia Activities ListHaemophilia200410556557115357785
  • DoriaASBabynPSLundinBReliability and construct validity of the compatible MRI scoring system for evaluation of haemophilic knees and ankles of haemophilic children. Expert MRI working group of the international prophylaxis study groupHaemophilia200612550351316919081
  • AltmanDGPractical Statistics for Medical Research1st edChapman & Hall/CRC1990
  • KosinskiMKellerSDWareJEJrHatoumHTKongSXThe SF-36 Health Survey as a generic outcome measure in clinical trials of patients with osteoarthritis and rheumatoid arthritis: relative validity of scales in relation to clinical measures of arthritis severityMed Care1999375 SupplMS23MS3910335741
  • KellerSBannCMDoddSLScheinJMendozaTRCleelandCSValidity of the brief pain inventory for use in documenting the outcomes of patients with noncancer painClin J Pain200420530931815322437
  • HarrisonMJDaviesLMBansbackNJIngramMAnisAHSymmonsDPThe validity and responsiveness of generic utility measures in rheumatoid arthritis: a reviewJ Rheumatol200835459260218278841
  • HerdmanMGudexCLloydADevelopment and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)Qual Life Res201120101727173621479777
  • VelikovaGBoothLSmithABMeasuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trialJ Clin Oncol200422471472414966096