Systemic vasculitis and patient-reported outcomes: how the assessment of patient preferences and perspectives could improve outcomes

References

• LuqmaniRSuppiahREdwardsCJMortality in Wegener’s granulomatosis: a bimodal patternRheumatology (Oxford)201150469770221112869
   PubMed Web of Science ®Google Scholar
• RobsonJDollHSuppiahRDamage in the ANCA-associated vasculitides: long-term data from the European vasculitis study group (EUVAS) therapeutic trialsAnn Rheum Dis201574117718424243925
   PubMed Web of Science ®Google Scholar
• NazarethRMasonJCTakayasu arteritis: severe consequences of delayed diagnosisQJM2011104979780020952441
   PubMed Web of Science ®Google Scholar
• JonesRBTervaertJWHauserTEuropean Vasculitis Study GroupRituximab versus cyclophosphamide in ANCA-associated renal vasculitisN Engl J Med2010363321122020647198
   PubMed Web of Science ®Google Scholar
• StoneJHTuckwellKDimonacoSTrial of Tocilizumab in giant-cell arteritisN Engl J Med2017377431732828745999
   PubMed Web of Science ®Google Scholar
• GuillevinLPagnouxCKarrasARituximab versus azathioprine for maintenance in ANCA-associated vasculitisN Engl J Med2014371191771178025372085
   PubMed Web of Science ®Google Scholar
• AbularrageCJSlidellMBSidawyANKreishmanPAmdurRLAroraSQuality of life of patients with Takayasu’s arteritisJ Vasc Surg200847113113718178464
   PubMed Web of Science ®Google Scholar
• BodurHBormanPOzdemirYAtanCKuralGQuality of life and life satisfaction in patients with Behçet’s disease: relationship with disease activityClin Rheumatol200625332933316267609
   PubMed Web of Science ®Google Scholar
• KoutantjiMHarroldELaneSEPearceSWattsRAScottDGInvestigation of quality of life, mood, pain, disability, and disease status in primary systemic vasculitisArthritis Rheum200349682683714673970
   PubMed Web of Science ®Google Scholar
• RobsonJCDawsonJCronholmPFHealth-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measurePatient Relat Outcome Meas20189173429379322
   PubMed Web of Science ®Google Scholar
• HellmannDBUhlfelderMLStoneJHDomains of health-related quality of life important to patients with giant cell arteritisArthritis Rheum200349681982514673969
   PubMed Web of Science ®Google Scholar
• BenarousLTerrierBLaborde-CasterotHEmployment, work disability and quality of life in patients with ANCA-associated vasculitides. The EXPOVAS studyClin Exp Rheumatol201735(Suppl) 103(1)4046
   Web of Science ®Google Scholar
• FrediMLazzaroniMGTaniCSystemic vasculitis and pregnancy: a multicenter study on maternal and neonatal outcome of 65 prospectively followed pregnanciesAutoimmun Rev201514868669125858351
   PubMed Web of Science ®Google Scholar
• ClowseMERichesonRLPieperCMerkelPAVasculitis Clinical Research ConsortiumPregnancy outcomes among patients with vasculitisArthritis Care Res (Hoboken)20136581370137423401494
   PubMed Web of Science ®Google Scholar
• LiddleJBartlamRMallenCDWhat is the impact of giant cell arteritis on patients’ lives? A UK qualitative studyBMJ Open201778e017073
   Web of Science ®Google Scholar
• RARDAReduce improve, empowerAddressing the shared needs of rare autoimmune rheumatic diseases2018
   Google Scholar
• HerlynKHellmichBSeoPMerkelPAPatient-reported outcome assessment in vasculitis may provide important data and a unique perspectiveArthritis Care Res (Hoboken)201062111639164520556814
   PubMed Web of Science ®Google Scholar
• SeoPJayneDLuqmaniRMerkelPAAssessment of damage in vasculitis: expert ratings of damageRheumatology (Oxford)200948782382719454608
   PubMed Web of Science ®Google Scholar
• TugwellPBoersMBrooksPSimonLStrandVIdzerdaLOMER-ACT: an international initiative to improve outcome measurement in rheumatologyTrials200783818039364
   PubMed Web of Science ®Google Scholar
• MerkelPAAydinSZBoersMThe OMERACT core set of outcome measures for use in clinical trials of ANCA-associated vasculitisJ Rheumatol20113871480148621724720
   PubMed Web of Science ®Google Scholar
• SreihAGAlibaz-OnerFKermaniTADevelopment of a core set of outcome measures for large-vessel vasculitis: report from OMERACT 2016J Rheumatol201744121933193728864646
   PubMed Web of Science ®Google Scholar
• HatemiGMearaAOzgulerYThe omeract core domain set for clinical trials in behcet’s syndromeArthritis Rheum201870
   Web of Science ®Google Scholar
• ExleyARBaconPALuqmaniRADevelopment and initial validation of the vasculitis damage index for the standardized clinical assessment of damage in the systemic vasculitidesArthritis Rheum19974023713809041949
   PubMed Web of Science ®Google Scholar
• RobsonJCDawsonJDollHValidation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaireAnn Rheum Dis20187781157116429695498
   PubMed Web of Science ®Google Scholar
• SreihAGAlibaz-OnerFEasleyEHealth-related outcomes of importance to patients with Takayasu’s arteritisClin Exp Rheumatol201836Suppl 1115157
   Google Scholar
• HatemiGMearaAOzgulerYDeveloping a core set of outcome measures for Behçet disease: report from OMERACT 2016J Rheumatol201744111750175328365574
   PubMed Web of Science ®Google Scholar
• TomassonGFarrarJTCuthbertsonDFatigue and physical functioning in patients with giant cell arteritisArthritis Rheum201668suppl 10
   Google Scholar
• WareJESherbourneCDThe MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selectionMed Care19923064734831593914
   PubMed Web of Science ®Google Scholar
• FitzpatrickRDaveyCBuxtonMJJonesDREvaluating patient-based outcome measures for use in clinical trialsHealth Technol Assess1998214iiv174
   PubMedGoogle Scholar
• StoneJHMerkelPASpieraRRAVE-ITN Research GroupRituximab versus cyclophosphamide for ANCA-associated vasculitisN Engl J Med2010363322123220647199
   PubMed Web of Science ®Google Scholar
• JayneDRWBruchfeldANHarperLCLEAR Study GroupRandomized trial of c5a receptor inhibitor avacopan in ANCA-associated vasculitisJ Am Soc Nephrol20172892756276728400446
   PubMed Web of Science ®Google Scholar
• PatrickDLBurkeLBPowersJHPatient-reported outcomes to support medical product labeling claims: FDA perspectiveValue Health200710(Suppl) 2S125S13717995471
   PubMed Web of Science ®Google Scholar
• FeredayJMuir-CochraneEDemonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme developmentInt J Qual Methods2006518092
   Google Scholar
• DrennanJCognitive interviewing: verbal data in the design and pretesting of questionnairesJ Adv Nurs2003421576312641812
   PubMed Web of Science ®Google Scholar
• CostelloAOsborneJBest practices in exploratory factor analysis: four recommendations for getting the most from your analysisPractical Assessment Res Eval200510719
   Google Scholar
• TennantAConaghanPGThe Rasch measurement model in rheumatology: what is it and why use it? When should it be applied, and what should one look for in a Rasch paper?Arthritis Rheum20075781358136218050173
   PubMed Web of Science ®Google Scholar
• GilworthGChamberlainMABhaktaBHaskardDSilmanATennantADevelopment of the BD-QoL: a quality of life measure specific to Behçet’s diseaseJ Rheumatol200431593193715124253
   PubMed Web of Science ®Google Scholar
• JennetteJCFalkRJBaconPA2012 Revised International Chapel Hill Consensus Conference Nomenclature of VasculitidesArthritis Rheum201365111123045170
   PubMed Web of Science ®Google Scholar
• WalshMFlossmannOBerdenAEuropean Vasculitis Study GroupRisk factors for relapse of antineutrophil cytoplasmic antibody-associated vasculitisArthritis Rheum201264254254821953279
   PubMed Web of Science ®Google Scholar
• WalshMMukhtyarCMahrAHealth-related quality of life in patients with newly diagnosed antineutrophil cytoplasmic antibody-associated vasculitisArthritis Care Res (Hoboken)20116371055106121452254
   PubMed Web of Science ®Google Scholar
• TomassonGBoersMWalshMAssessment of health-related quality of life as an outcome measure in granulomatosis with polyangiitis (Wegener’s)Arthritis Care Res (Hoboken)201264227327921954229
   PubMed Web of Science ®Google Scholar
• PugnetGPagnouxCTerrierBFrench Vasculitis Study GroupRituximab versus azathioprine for ANCA-associated vasculitis maintenance therapy: impact on global disability and health-related quality of lifeClin Exp Rheumatol2016343 Suppl 97S54S59
   Web of Science ®Google Scholar
• BasuNJonesGTFluckNFatigue: a principal contributor to impaired quality of life in ANCA-associated vasculitisRheumatology (Oxford)20104971383139020400759
   PubMed Web of Science ®Google Scholar
• BasuNMcCleanAHarperLExplaining fatigue in ANCA-associated vasculitisRheumatology (Oxford)20135291680168523740186
   PubMed Web of Science ®Google Scholar
• RobsonJCMilmanNTomassonGExploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT processJ Rheumatol201542112204220926329344
   PubMed Web of Science ®Google Scholar
• MatchamFScottICRaynerLThe impact of rheumatoid arthritis on quality-of-life assessed using the SF-36: a systematic review and meta-analysisSemin Arthritis Rheum201444212313024973898
   PubMed Web of Science ®Google Scholar
• SinghKKondalDShivashankarRHealth-related quality of life variations by sociodemographic factors and chronic conditions in three metropolitan cities of South Asia: the CARRS studyBMJ Open2017710e018424
   Web of Science ®Google Scholar
• BaileyPKHamiltonAJClissoldRLYoung adults’ perspectives on living with kidney failure: a systematic review and thematic synthesis of qualitative studiesBMJ Open201881e019926
   PubMed Web of Science ®Google Scholar
• GraysonPCAmudalaNAMcalearCAIllness perceptions and fatigue in systemic vasculitisArthritis Care Res (Hoboken)201365111835184323861259
   PubMed Web of Science ®Google Scholar
• RobsonJCTomassonGMilmanNOMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody-associated VasculitisJ Rheumatol201744101529153528864650
   PubMed Web of Science ®Google Scholar
• PetriHNevittASarsourKNapalkovPCollinsonNIncidence of giant cell arteritis and characteristics of patients: data-driven analysis of comorbiditiesArthritis Care Res (Hoboken)201567339039525132663
   PubMed Web of Science ®Google Scholar
• SalvaraniCPipitoneNVersariAHunderGGClinical features of polymyalgia rheumatica and giant cell arteritisNat Rev Rheumatol20128950952122825731
   PubMed Web of Science ®Google Scholar
• SalvaraniCCiminoLMacchioniPRisk factors for visual loss in an Italian population-based cohort of patients with giant cell arteritisArthritis Rheum200553229329715818722
   PubMed Web of Science ®Google Scholar
• MukhtyarCGuillevinLCidMCEuropean Vasculitis Study GroupEULAR recommendations for the management of large vessel vasculitisAnn Rheum Dis200968331832318413441
   PubMed Web of Science ®Google Scholar
• DasguptaBBorgFAHassanNBSR and BHPR Standards, Guidelines and Audit Working GroupBSR and BHPR guidelines for the management of giant cell arteritisRheumatology (Oxford)20104981594159720371504
   PubMed Web of Science ®Google Scholar
• RobsonJCDawsonJCronholmPFPatient perceptions of gluco-corticoids in anti-neutrophil cytoplasmic antibody-associated vasculitisRheumatol Int2018384675-68268229124398
   PubMed Web of Science ®Google Scholar
• BlackRJGoodmanSMRuedigerCLesterSMackieSLHillCLA survey of glucocorticoid adverse effects and benefits in rheumatic diseases: the patient perspectiveJ Clin Rheumatol201723841642028926469
   PubMed Web of Science ®Google Scholar
• McDonoughAKCurtisJRSaagKGThe epidemiology of glucocorticoid-associated adverse eventsCurr Opin Rheumatol200820213113718349741
   PubMed Web of Science ®Google Scholar
• FardetLFlahaultAKettanehACorticosteroid-induced clinical adverse events: frequency, risk factors and patient’s opinionBr J Dermatol2007157114214817501951
   PubMed Web of Science ®Google Scholar
• StrandVDimonacoSTuckwellKKlearmanMCollinsonNStoneJHealth-related quality of life in patients with giant cell arteritis treated with Tocilizumab in a Randomized Controlled Phase 3 TrialArthritis Rheum201769suppl 10
   Google Scholar
• KupersmithMJSpeiraRLangerRVisual function and quality of life among patients with giant cell (temporal) arteritisJ Neuroophthalmol200121426627311756857
   PubMed Web of Science ®Google Scholar
• JobardSMagnantJBlascoHQuality of life of patients treated for giant cell arteritis: a case-control studyClin Rheumatol20173692055206228405843
   PubMed Web of Science ®Google Scholar
• AydinSZDireskeneliHSreihAUpdate on outcome measure development for large vessel vasculitis: report from OMERACT 12J Rheumatol201542122465246926077399
   PubMed Web of Science ®Google Scholar
• RobsonJAlmeidaCDawsonJA multinational qualitative study in giant cell arteritis: patient perceptions of diagnosis, treatment, impact on health-related quality of life and contextual factorsAnn Rheum Dis201817777
   Google Scholar
• MasonJCTakayasu arteritis – advances in diagnosis and managementNat Rev Rheumatol20106740641520596053
   PubMed Web of Science ®Google Scholar
• YilmazNCanMOnerFAImpaired quality of life, disability and mental health in Takayasu’s arteritisRheumatology (Oxford)201352101898190423873821
   PubMed Web of Science ®Google Scholar
• AkarSCanGBinicierOQuality of life in patients with Takayasu’s arteritis is impaired and comparable with rheumatoid arthritis and ankylosing spondylitis patientsClin Rheumatol200827785986518097710
   PubMed Web of Science ®Google Scholar
• DireskeneliHAydinSZKermaniTADevelopment of outcome measures for large-vessel vasculitis for use in clinical trials: opportunities, challenges, and research agendaJ Rheumatol20113871471147921724719
   PubMed Web of Science ®Google Scholar
• HatemiGChristensenRBangD2018 update of the EULAR recommendations for the management of Behçet’s syndromeAnn Rheum Dis201877680881829625968
   PubMed Web of Science ®Google Scholar
• KalraSSilmanAAkman-DemirGDiagnosis and management of neuro-Behçet’s disease: international consensus recommendationsJ Neurol201426191662167624366648
   PubMed Web of Science ®Google Scholar
• FabianiCVitaleAOrlandoIQuality of life impairment in Behçet’s disease and relationship with disease activity: a prospective studyIntern Emerg Med201712794795528620840
   PubMed Web of Science ®Google Scholar
• GülIGKartalcıŞCumurcuBEKarıncaoğluYYoloğluSKarlıdağREvaluation of sexual function in patients presenting with Behçet’s disease with or without depressionJ Eur Acad Dermatol Venereol201327101244125123003681
   PubMed Web of Science ®Google Scholar
• HatemiGMerkelPAHamuryudanVOutcome measures used in clinical trials for Behçet syndrome: a systematic reviewJ Rheumatol201441359961224488418
   PubMed Web of Science ®Google Scholar
• ErtamIKitapciogluGAksuKQuality of life and its relation with disease severity in Behçet’s diseaseClin Exp Rheumatol2009272 Suppl 53S18S2219796527
   PubMed Web of Science ®Google Scholar
• MumcuGNiaziSStewartJOral health and related quality of life status in patients from UK and Turkey: a comparative study in Behcet’s diseaseJ Oral Pathol Med200938540640919298505
   PubMed Web of Science ®Google Scholar
• CalikogluEOnderMCosarBCandansayarSDepression, anxiety levels and general psychological profile in Behçet’s diseaseDermatology2001203323824011701978
   PubMed Web of Science ®Google Scholar
• HatemiGMelikogluMTuncRApremilast for Behçet’s syndrome—a phase 2, placebo-controlled studyN Engl J Med2015372161510151825875256
   PubMed Web of Science ®Google Scholar
• MelikogluMAMelikogluMThe relationship between disease activity and depression in patients with Behcet disease and rheumatoid arthritisRheumatol Int201030794194619657642
   PubMed Web of Science ®Google Scholar
• ToumaZGhandourLSibaiACross-cultural adaptation and validation of Behçet’s disease quality of life questionnaireBMC Med Res Methodol2011115221507231
   PubMed Web of Science ®Google Scholar
• LeeJKimSSJeongHJAssociation of sleep quality in Behcet disease with disease activity, depression, and quality of life in Korean populationKorean J Intern Med201732235235928192886
   PubMed Web of Science ®Google Scholar
• ChoiHJSeoMRRyuHJBaekHJCross-cultural adaptation and validation of the Behcet’s disease current activity form in KoreaKorean J Intern Med201530571471826354066
   PubMed Web of Science ®Google Scholar