156
Views
16
CrossRef citations to date
0
Altmetric
Original Research

Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure

, , , , , , , , , , , , , , & show all
Pages 17-34 | Published online: 04 Jan 2018

References

  • JennetteJCFalkRJBaconPA2012 revised international chapel hill consensus conference nomenclature of vasculitidesArthritis Rheum201365111123045170
  • McNicholasBAGriffinTPDonnellanSANCA-associated vasculitis: a comparison of cases presenting to nephrology and rheumatology servicesQJM20161091280380927318367
  • BasuNJonesGTFluckNFatigue: a principal contributor to impaired quality of life in ANCA-associated vasculitisRheumatology (Oxford)20104971383139020400759
  • YatesMWattsRABajemaIMEULAR/ERA-EDTA recommendations for the management of ANCA-associated vasculitisAnn Rheum Dis20167591583159427338776
  • RobsonJDollHSuppiahRDamage in the anca-associated vasculitides: long-term data from the European vasculitis study group (EUVAS) therapeutic trialsAnn Rheum Dis201574117718424243925
  • WalshMFlossmannOBerdenARisk factors for relapse of antineutrophil cytoplasmic antibody-associated vasculitisArthritis Rheum201264254254821953279
  • FlossmannOBerdenAde GrootKEuropean Vasculitis Study GroupLong-term patient survival in ANCA-associated vasculitisAnn Rheum Dis201170348849421109517
  • QuaresmaMColemanMPRachetB40-year trends in an index of survival for all cancers combined and survival adjusted for age and sex for each cancer in England and Wales, 1971–2011: a population-based studyLancet201538599741206121825479696
  • HilhorstMWildeBvan PaassenPWinkensBvan Breda VriesmanPCohen TervaertJWLimburg Renal RegistryImproved outcome in anti-neutrophil cytoplasmic antibody (ANCA)-associated glo-merulonephritis: a 30-year follow-up studyNephrol Dial Transplant201328237337923223225
  • RheeRLHoganSLPoultonCJTrends in long-term outcomes among patients with ANCA-associated vasculitis with renal diseaseArthritis Rheumatol20166871711172026814428
  • HerlynKHellmichBSeoPMerkelPAPatient-reported outcome assessment in vasculitis may provide important data and a unique perspectiveArthritis Care Res (Hoboken)201062111639164520556814
  • WalshMMukhtyarCMahrAHealth-related quality of life in patients with newly diagnosed antineutrophil cytoplasmic antibody-associated vasculitisArthritis Care Res (Hoboken)20116371055106121452254
  • BasuNMcCleanAHarperLThe characterisation and determinants of quality of life in ANCA associated vasculitisAnn Rheum Dis201473120721123355077
  • CarpenterDMThorpeCTLewisMDevellisRFHoganSLHealth-related quality of life for patients with vasculitis and their spousesArthritis Rheum200961225926519177525
  • TomassonGBoersMWalshMAssessment of health-related quality of life as an outcome measure in granulomatosis with polyan-giitis (Wegener’s)Arthritis Care Res2012642273279
  • KoutantjiMHarroldELaneSEPearceSWattsRAScottDGInvestigation of quality of life, mood, pain, disability, and disease status in primary systemic vasculitisArthritis Rheum200349682683714673970
  • BenarousLTerrierBLaborde-CasterotHFrench Vasculitis Study Group (FVSG)Employment, work disability and quality of life in patients with ANCA-associated vasculitides. The EXPOVAS studyClin Exp Rheumatol201710314046
  • BoomsmaMMBijlMStegemanCAKallenbergCGHoffmanGSTervaertJWPatients’ perceptions of the effects of systemic lupus erythematosus on health, function, income, and interpersonal relationships: a comparison with Wegener’s granulomatosisArthritis Rheum200247219620111954014
  • HoffmanGSDruckerYCotchMFLockerGAEasleyKKwohKWegener’s granulomatosis: patient-reported effects of disease on health, function, and incomeArthritis Rheum19984112225722629870883
  • JonesRBTervaertJWHauserTEuropean Vasculitis Study GroupRituximab versus cyclophosphamide in ANCA-associated renal vasculitisN Engl J Med2010363321122020647198
  • StoneJHMerkelPASpieraRRAVE-ITN Research GroupRituximab versus cyclophosphamide for ANCA-associated vasculitisN Engl J Med2010363322123220647199
  • GuillevinLPagnouxCKarrasAFrench Vasculitis Study GroupRituximab versus azathioprine for maintenance in ANCA-associated vasculitisN Engl J Med2014371191771178025372085
  • LuqmaniRABaconPAMootsRJBirmingham vasculitis activity score (BVAS) in systemic necrotizing vasculitisQJM199487116716787820541
  • MukhtyarCLeeRBrownDModification and validation of the birmingham vasculitis activity score (version 3)Ann Rheum Dis200968121827183219054820
  • MerkelPAAydinSZBoersMThe OMERACT core set of outcome measures for use in clinical trials of ANCA-associated vasculitisJ Rheumatol20113871480148621724720
  • KirwanJRHewlettSEHeibergTIncorporating the patient perspective into outcome assessment in rheumatoid arthritis progress at OMERACT 7J Rheumatol200532112250225616265712
  • MerkelPAAydinSZBoersMCurrent status of outcome measure development in vasculitisJ Rheumatol201441359359824429177
  • RobsonJCMilmanNTomassonGExploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT processJ Rheumatol201542112204220926329344
  • Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labelling Calims(FDA) USDoHaHSFaDAMarylandFDA2009
  • McCollEDeveloping questionnairesFayersPHaysRAssessing Quality of Life in Clinical Trials2nd edOxford, UKOxford Medical Publications2005
  • RitchieJSpencerLQualitative data analysis for applied policy researchBrymanABurgessRGAnalysing Qualitative DataLondon, UKRoutledge1994
  • PopeCZieblandSMaysNQualitative research in health care. Analysing qualitative dataBMJ2000320722711411610625273
  • FeredayJMuir-CochraneEDemonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme developmentInt J Qual Meth20065122
  • International QVivo qualitative data analysis software. Version 10QSR International2012 Available from: qsrinternational.comAccessed October 11, 2017
  • KerrCNixonAWildDAssessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes researchExpert Rev Pharmacoecon Outcomes Res201010326928120545592
  • BorgattiSPElicitation techniques for cultural domain analysis. Enhanced ethnographic methods: audiovisual techniques, focused group interviews, and elicitation techniquesEthnographer ToolkitWalnut Creek, CAAlta Mira1999115151
  • SchraufRWSanchezJUsing freelisting to identify, assess, and charac-terize age differences in shared cultural domainsJ Gerontol B Psychol Sci Soc Sci2008636S385S39319092048
  • BorgattiSPCarboniIOn measuring individual knowledge in organizationsOrgan Res Methods2007103449462
  • HandwekerWPBorgattiSPReasoning with numbersBernardHRThe Handbook of Methods in Cultural AnthropologyLanham, MDAltamira Press1998549593
  • DrennanJCognitive interviewing: verbal data in the design and pretesting of questionnairesJ Adv Nurs2003421576312641812
  • ConradFBlairJFrom impressions to data: increasing the objectivity of congitive interviewsPaper presented at: American Statistical Association1996Alexandria, VA, USA
  • PharmaQuest [homepage] Available at: http://www.corptransinc.com/pharmaquestAccessed January 5, 2017
  • BasuNMcCleanAHarperLMarkers for work disability in anti-neutrophil cytoplasmic antibody-associated vasculitisRheumatology (Oxford)201453595395624489015
  • CleanthousSNewmanSPShipleyMIsenbergDACanoSJWhat constitutes uncertainty in systemic lupus erythematosus and rheumatoid arthritis?Psychol Health201328217118822775405
  • CleanthousSIsenbergDANewmanSPCanoSJPatient Uncertainty Questionnaire-Rheumatology (PUQ-R): development and validation of a new patient-reported outcome instrument for systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) in a mixed methods studyHealth Qual Life Outcomes2016143326927364
  • PuechalXPagnouxCPerrodeauELong-term outcomes among participants in the WEGENT trial of remission-maintenance therapy for granulomatosis with polyangiitis (Wegener’s) or microscopic poly-angiitisArthritis Rheumatol201668369070126473755
  • WildDGroveAMartinMISPOR Task Force for Translation and Cultural AdaptationPrinciples 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
  • WareJEJrSherbourneCDThe MOS 36-item short-form health survey (SF-36). I. conceptual framework and item selectionMed Care19923064734831593914
  • RobsonJCMilmanNTomassonGExploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT processJ Rheumatol201542112204220926329344