Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis

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dc.contributor.authorRuperto, Nicolino
dc.contributor.authorRavelli, Angelo
dc.contributor.authorMurray, Kevin J.
dc.contributor.authorLovell, Daniel J.
dc.contributor.authorAndersson-Gare, Boel
dc.contributor.authorFeldman, Brian M.
dc.contributor.authorGaray, Stella
dc.contributor.authorKuis, Wietse
dc.contributor.authorMachado, Claudio [UNESP]
dc.contributor.authorPachman, Lauren
dc.contributor.authorPrieur, Anne-Marie
dc.contributor.authorRider, Lisa G.
dc.contributor.authorSilverman, Earl
dc.contributor.authorTsitsami, Elena
dc.contributor.authorWoo, Pat
dc.contributor.authorGiannini, Edward H.
dc.contributor.authorMartini, Alberto
dc.contributor.authorBae, Sang Cheol
dc.contributor.authorBalogh, Zsolt
dc.contributor.authorBurgos-Vargas, Ruben
dc.contributor.authorDe Cunto, Carmen
dc.contributor.authorDe Inocencio, Jaime
dc.contributor.authorDolezalova, Pavla
dc.contributor.authorHarjacek, Miroslav
dc.contributor.authorHashkes, Philip
dc.contributor.authorHofer, Michael
dc.contributor.authorHonkanen, Visa
dc.contributor.authorHuemer, Christian
dc.contributor.authorHuppertz, Hans-Iko
dc.contributor.authorJoos, Rik
dc.contributor.authorKanakoudi, Florence
dc.contributor.authorLilleby, Vibke
dc.contributor.authorMelo-Gomes, Jose
dc.contributor.authorMihaylova, Dimitrina
dc.contributor.authorNielsen, Susan
dc.contributor.authorNikishina, Irina
dc.contributor.authorOzdogan, Huri
dc.contributor.authorPagava, Kharaman
dc.contributor.authorReed, Anne M.
dc.contributor.authorRennebohm, Robert
dc.contributor.authorRomicka, Anna Maria
dc.contributor.authorRooney, Madeleine
dc.contributor.authorRumba, Ingrida
dc.contributor.authorSusic, Gordana
dc.contributor.authorVesely, Richard
dc.contributor.institutionPediatric II
dc.contributor.institutionPrincess Margaret Hosp. for Children
dc.contributor.institutionCincinnati Childrens Hosp. Med. Ctr.
dc.contributor.institutionRyhov's County Hospital
dc.contributor.institutionRheumatology Department
dc.contributor.institutionUnidad de Reumatologia
dc.contributor.institutionDept. Pediatr. Immunol./Rheumatol.
dc.contributor.institutionUniversidade Estadual Paulista (Unesp)
dc.contributor.institutionDept. of Immunology/Rheumatology
dc.contributor.institutionHematol. et Rhumatologie Pediatrique
dc.contributor.institutionNational Institute of Health
dc.contributor.institutionAristotle University
dc.date.accessioned2014-05-27T11:20:56Z
dc.date.available2014-05-27T11:20:56Z
dc.date.issued2003-12-01
dc.description.abstractObjective. To identify preliminary core sets of outcome variables for disease activity and damage assessment in juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM). Methods. Two questionnaire surveys were mailed to 267 physicians from 46 different countries asking each member to select and rank the response variables used when assessing clinical response in patients with JSLE or JDM. Next, 40 paediatric rheumatologists from 34 countries met and, using the nominal group technique, selected the domains to be included in the disease activity and damage core sets for JSLE and JDM. Results. A total of 41 response variables for JSLE and 37 response variables for JDM were selected and ranked through the questionnaire surveys. In the consensus conference, domains selected for both JSLE and JDM activity or damage core sets included the physician and parent/patient subjective assessments and a global score tool. Domains specific for JSLE activity were the immunological tests and the kidney function parameters. Concerning JDM, functional ability and muscle strength assessments were indicated for both activity and damage core sets, whereas serum muscle enzymes were included only in the activity core set. A specific paediatric domain called 'growth and development' was introduced in the disease damage core set for both diseases and the evaluation of health-related quality of life was advised in order to capture the influence of the disease on the patient lifestyle. Conclusions. We developed preliminary core sets of measures for disease activity and damage assessment in JSLE and JDM. The prospective validation of the core sets is in progress.en
dc.description.affiliationIRCCS G. Gaslini Pediatric II, Largo Gaslini 5, 16147 Genova
dc.description.affiliationPrincess Margaret Hosp. for Children, Perth
dc.description.affiliationCincinnati Childrens Hosp. Med. Ctr., Cincinnati, OH
dc.description.affiliationRyhov's County Hospital Department of Pediatrics, Jönköping
dc.description.affiliationHospital for Sick Children Rheumatology Department, Toronto, Ont.
dc.description.affiliationHospital Sor Maria Ludovica Unidad de Reumatologia, Buenos Aires
dc.description.affiliationUMC Utrecht-W. Kinderziekenhuis Dept. Pediatr. Immunol./Rheumatol., Utrecht
dc.description.affiliationDepartment of Paediatrics Botucatu Medical School, São Paulo
dc.description.affiliationChildren's Memorial Hospital Dept. of Immunology/Rheumatology, Chicago, IL
dc.description.affiliationHôpital Necker Enfants Malades Unite' d'Immunologie Hematol. et Rhumatologie Pediatrique, Paris
dc.description.affiliationEnvironmental Autoimmunity Group Natl. Inst. of Environ. Hlth. Sci. National Institute of Health, Bethesda, MD
dc.description.affiliationDepartment of Pediatrics Aristotle University, Thessaloniki
dc.description.affiliationGrt. Ormond St. Hosp. Sick Children Rheumatology Department, London
dc.description.affiliationUnespDepartment of Paediatrics Botucatu Medical School, São Paulo
dc.format.extent1452-1459
dc.identifierhttp://dx.doi.org/10.1093/rheumatology/keg403
dc.identifier.citationRheumatology, v. 42, n. 12, p. 1452-1459, 2003.
dc.identifier.doi10.1093/rheumatology/keg403
dc.identifier.issn1462-0324
dc.identifier.scopus2-s2.0-3142718093
dc.identifier.urihttp://hdl.handle.net/11449/67489
dc.language.isoeng
dc.relation.ispartofRheumatology
dc.relation.ispartofjcr5.245
dc.relation.ispartofsjr2,344
dc.rights.accessRightsAcesso restrito
dc.sourceScopus
dc.subjectConsensus
dc.subjectCore set
dc.subjectDisease activity assessment
dc.subjectDisease damage assessment
dc.subjectJuvenile dermatomyositis
dc.subjectJuvenile systemic lupus erythematosus
dc.subjectmuscle enzyme
dc.subjectchild development
dc.subjectchild growth
dc.subjectchildhood disease
dc.subjectcontrolled study
dc.subjectdermatomyositis
dc.subjectdiagnostic test
dc.subjectdisease activity
dc.subjectenzyme blood level
dc.subjectfunctional assessment
dc.subjecthealth survey
dc.subjecthuman
dc.subjectimmunology
dc.subjectinternational cooperation
dc.subjectkidney function
dc.subjectlaboratory test
dc.subjectlifestyle
dc.subjectmeasurement
dc.subjectmedical assessment
dc.subjectmedical parameters
dc.subjectmedical specialist
dc.subjectmuscle strength
dc.subjectoutcomes research
dc.subjectparent
dc.subjectperception
dc.subjectphysician
dc.subjectpostal mail
dc.subjectpriority journal
dc.subjectquality of life
dc.subjectquestionnaire
dc.subjectrating scale
dc.subjectscoring system
dc.subjectstatistical analysis
dc.subjectsystemic lupus erythematosus
dc.subjectvalidation process
dc.subjectChild
dc.subjectClinical Trials
dc.subjectDelphi Technique
dc.subjectDermatomyositis
dc.subjectHumans
dc.subjectLupus Erythematosus, Systemic
dc.subjectProspective Studies
dc.subjectQuestionnaires
dc.subjectSeverity of Illness Index
dc.subjectTreatment Outcome
dc.titlePreliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositisen
dc.typeArtigo
dcterms.licensehttp://www.oxfordjournals.org/access_purchase/self-archiving_policyb.html
unesp.campusUniversidade Estadual Paulista (Unesp), Faculdade de Medicina, Botucatupt

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