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Please use this identifier to cite or link to this item: http://acervodigital.unesp.br/handle/11449/117319
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dc.contributor.authorMoorthy, Lakshmi Nandini-
dc.contributor.authorRoy, Elizabeth-
dc.contributor.authorKurra, Vamsi-
dc.contributor.authorPeterson, Margaret G. E.-
dc.contributor.authorHassett, Afton L.-
dc.contributor.authorLehman, Thomas J. A.-
dc.contributor.authorScot, Christiaan-
dc.contributor.authorEl-Ghoneimy, Dalia-
dc.contributor.authorSaad, Shereen-
dc.contributor.authorEl Feky, Reem-
dc.contributor.authorAl-Mayouf, Sulaiman-
dc.contributor.authorDolezalova, Pavla-
dc.contributor.authorMalcova, Hana-
dc.contributor.authorHerlin, Troels-
dc.contributor.authorNielsen, Susan-
dc.contributor.authorWulffraat, Nico-
dc.contributor.authorvan Royen, Annet-
dc.contributor.authorMarks, Stephen D.-
dc.contributor.authorBelot, Alexandre-
dc.contributor.authorBrunner, Jurgen-
dc.contributor.authorHuemer, Christian-
dc.contributor.authorFoeldvari, Ivan-
dc.contributor.authorHorneff, Gerd-
dc.contributor.authorSaurenman, Traudel-
dc.contributor.authorSchroeder, Silke-
dc.contributor.authorPratsidou-Gertsi, Polyxeni-
dc.contributor.authorTrachana, Maria-
dc.contributor.authorUziel, Yosef-
dc.contributor.authorAggarwal, Amita-
dc.contributor.authorConstantin, Tamas-
dc.contributor.authorCimaz, Rolando-
dc.contributor.authorGiani, Theresa-
dc.contributor.authorCantarini, Luca-
dc.contributor.authorFalcini, Fernanda-
dc.contributor.authorManzoni, Silvia Magni-
dc.contributor.authorRavelli, Angelo-
dc.contributor.authorRigante, Donato-
dc.contributor.authorZulian, Fracnceso-
dc.contributor.authorMiyamae, Takako-
dc.contributor.authorYokota, Shumpei-
dc.contributor.authorSato, Juliana-
dc.contributor.authorMagalhaes, Claudia S.-
dc.contributor.authorLen, Claudio A.-
dc.contributor.authorAppenzeller, Simone-
dc.contributor.authorKnupp, Sheila Oliveira-
dc.contributor.authorRodrigues, Marta Cristine-
dc.contributor.authorSztajnbok, Flavio-
dc.contributor.authorAlmeida, Rozana Gasparello de-
dc.contributor.authorJesus, Adriana Almeida de-
dc.contributor.authorArruda Campos, Lucia Maria de-
dc.contributor.authorSilva, Clovis-
dc.contributor.authorLazar, Calin-
dc.contributor.authorSusic, Gordana-
dc.contributor.authorAvcin, Tadej-
dc.contributor.authorCuttica, Ruben-
dc.contributor.authorBurgos-Vargas, Ruben-
dc.contributor.authorFaugier, Enrique-
dc.contributor.authorAnton, Jordi-
dc.contributor.authorModesto, Consuelo-
dc.contributor.authorVazquez, Liza-
dc.contributor.authorBarillas, Lilliana-
dc.contributor.authorBarinstein, Laura-
dc.contributor.authorSterba, Gary-
dc.contributor.authorMaldonado, Irama-
dc.contributor.authorOzen, Seza-
dc.contributor.authorKasapcopur, Ozgur-
dc.contributor.authorDemirkaya, Erkan-
dc.contributor.authorBenseler, Susa-
dc.contributor.authorCollaborative Grp-
dc.date.accessioned2015-03-18T15:55:50Z-
dc.date.accessioned2016-10-25T20:35:04Z-
dc.date.available2015-03-18T15:55:50Z-
dc.date.available2016-10-25T20:35:04Z-
dc.date.issued2014-11-25-
dc.identifierhttp://dx.doi.org/10.1186/1546-0096-12-49-
dc.identifier.citationPediatric Rheumatology. London: Biomed Central Ltd, v. 12, 6 p., 2014.-
dc.identifier.issn1546-0096-
dc.identifier.urihttp://hdl.handle.net/11449/117319-
dc.identifier.urihttp://acervodigital.unesp.br/handle/11449/117319-
dc.description.abstractBackground: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases.Findings: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY (c)) to Simple Measure of Impact of Illness in Youngsters (SMILY (c)-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY (c)-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n= 15) and 17 parents participated. The mean age was 12 +/- 4 years, with median disease duration of 21 months (1-172 months). We translated SMILY (c)-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.Conclusion: SMILY (c)-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY (c)-Illness with its available translations may be used as useful adjuncts to clinical practice and research.en
dc.format.extent6-
dc.language.isoeng-
dc.publisherBiomed Central Ltd-
dc.sourceWeb of Science-
dc.titleHealth related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaborationen
dc.typeoutro-
dc.contributor.institutionRutgers State Univ-
dc.contributor.institutionHosp Special Surg-
dc.contributor.institutionUniv Michigan-
dc.contributor.institutionRed Cross War Mem Childrens Hosp-
dc.contributor.institutionAin Shams Univ-
dc.contributor.institutionKing Faisal Specialist Hosp & Res Ctr-
dc.contributor.institutionCharles Univ Prague-
dc.contributor.institutionGen Univ Hosp-
dc.contributor.institutionUniv Hosp Motol-
dc.contributor.institutionAarhus Univ-
dc.contributor.institutionRigshosp-
dc.contributor.institutionUniv Med Ctr-
dc.contributor.institutionWilhelmina Childrens Hosp-
dc.contributor.institutionGreat Ormond St Hosp Sick Children-
dc.contributor.institutionLyon Univ-
dc.contributor.institutionMed Univ Innsbruck-
dc.contributor.institutionPrim Univ Doz-
dc.contributor.institutionHamburg Ctr Pediat & Adolescence Rheumatol-
dc.contributor.institutionAsklepios Clin Sankt-
dc.contributor.institutionUniv Zurich-
dc.contributor.institutionAristotle Univ Thessaloniki-
dc.contributor.institutionIsrael Meir Hosp-
dc.contributor.institutionSanjay Gandhi Postgrad Inst Med Sci-
dc.contributor.institutionSemmelweis Univ-
dc.contributor.institutionAnna Meyer Hosp-
dc.contributor.institutionUniv Siena-
dc.contributor.institutionUniv Florence-
dc.contributor.institutionOsped Pediat Bambino Gesu-
dc.contributor.institutionUniv Genoa Pediat II Reumatol-
dc.contributor.institutionUniv Cattolica Sacro Cuore-
dc.contributor.institutionUniv Padua-
dc.contributor.institutionYokohama City Univ-
dc.contributor.institutionUniversidade Estadual Paulista (UNESP)-
dc.contributor.institutionUniversidade Federal de São Paulo (UNIFESP)-
dc.contributor.institutionUniversidade Estadual de Campinas (UNICAMP)-
dc.contributor.institutionUniversidade Federal do Rio de Janeiro (UFRJ)-
dc.contributor.institutionUniv Estado do-
dc.contributor.institutionUniversidade de São Paulo (USP)-
dc.contributor.institutionChildrens Inst-
dc.contributor.institutionClin Pediat I-
dc.contributor.institutionInst Rheumatol-
dc.contributor.institutionUniv Childrens Hosp-
dc.contributor.institutionHead Rheumatol Hosp Pedro Elizalde-
dc.contributor.institutionHosp Gen Mexico City-
dc.contributor.institutionHosp Infantil Mexico Fed Gomez-
dc.contributor.institutionHosp San Juan Dios-
dc.contributor.institutionHosp Univ Valle Hebron-
dc.contributor.institutionMt Sinai Med Ctr-
dc.contributor.institutionComplejo Hosp Univ Ruiz & Paez-
dc.contributor.institutionHacettepe Univ-
dc.contributor.institutionIstanbul Univ-
dc.contributor.institutionFMF Arthrit Vasculitis & Orphan Dis Res Ctr-
dc.contributor.institutionUniv Calgary-
dc.description.affiliationRutgers State Univ, Robert Wood Johnson Med Sch, New Brunswick, NJ 08903 USA-
dc.description.affiliationRutgers State Univ, Child Hlth Inst New Jersey, New Brunswick, NJ 08901 USA-
dc.description.affiliationHosp Special Surg, New York, NY 10021 USA-
dc.description.affiliationUniv Michigan, Ann Arbor, MI 48109 USA-
dc.description.affiliationRed Cross War Mem Childrens Hosp, Cape Town, South Africa-
dc.description.affiliationAin Shams Univ, Pediat Allergy Immunol & Rheumatol Unit, Cairo, Egypt-
dc.description.affiliationAin Shams Univ, Pediat Rheumatol Pediat Allergy Immunol & Rheum, Cairo, Egypt-
dc.description.affiliationKing Faisal Specialist Hosp & Res Ctr, Riyadh 11211, Saudi Arabia-
dc.description.affiliationCharles Univ Prague, Prague, Czech Republic-
dc.description.affiliationGen Univ Hosp, Prague, Czech Republic-
dc.description.affiliationUniv Hosp Motol, Dept Pediat, Prague, Czech Republic-
dc.description.affiliationAarhus Univ, Hosp Skejby, Aarhus, Denmark-
dc.description.affiliationRigshosp, Juliane Marie Ctr, DK-2100 Copenhagen, Denmark-
dc.description.affiliationUniv Med Ctr, Dept Pediat Immunol, Utrecht, Netherlands-
dc.description.affiliationWilhelmina Childrens Hosp, Utrecht, Netherlands-
dc.description.affiliationGreat Ormond St Hosp Sick Children, Children NHS Fdn Trust, Renal Unit, London, England-
dc.description.affiliationLyon Univ, Hosp Civils Lyon, Rheumatol & Dermatol Dept, Lyon, France-
dc.description.affiliationMed Univ Innsbruck, A-6020 Innsbruck, Austria-
dc.description.affiliationPrim Univ Doz, Bregenz, Austria-
dc.description.affiliationHamburg Ctr Pediat & Adolescence Rheumatol, Hamburg, Germany-
dc.description.affiliationAsklepios Clin Sankt, Augustin, Germany-
dc.description.affiliationUniv Zurich, Childrens Hosp, Zurich, Switzerland-
dc.description.affiliationAristotle Univ Thessaloniki, Pediat Immunol & Rheumatol Referral Ctr, GR-54006 Thessaloniki, Greece-
dc.description.affiliationIsrael Meir Hosp, Kefar Sava, Israel-
dc.description.affiliationSanjay Gandhi Postgrad Inst Med Sci, Lucknow, Uttar Pradesh, India-
dc.description.affiliationSemmelweis Univ, H-1085 Budapest, Hungary-
dc.description.affiliationAnna Meyer Hosp, Florence, Italy-
dc.description.affiliationUniv Siena, Res Ctr System Autoimmune & Autoinflammatory Dis, I-53100 Siena, Italy-
dc.description.affiliationUniv Florence, Florence, Italy-
dc.description.affiliationOsped Pediat Bambino Gesu, IRCCS, Pediat Rheumatol Unit, Rome, Italy-
dc.description.affiliationUniv Genoa Pediat II Reumatol, Ist G Gaslini EULAR, Ctr Excellence Rheumatol, Genoa, Italy-
dc.description.affiliationUniv Cattolica Sacro Cuore, Inst Pediat, Rome, Italy-
dc.description.affiliationUniv Padua, Dept Pediat, Pediat Rheumatol Unit, Padua, Italy-
dc.description.affiliationYokohama City Univ, Sch Med, Yokohama, Kanagawa 232, Japan-
dc.description.affiliationUniv Estadual Paulista, UNESP, Botucatu, SP, Brazil-
dc.description.affiliationUniv Fed Sao Paulo, Dept Pediat, Sao Paulo, Brazil-
dc.description.affiliationUniv Estadual Campinas, Dept Med, Campinas, SP, Brazil-
dc.description.affiliationUniv Fed Rio de Janeiro, Dept Pediat, Rio De Janeiro, Brazil-
dc.description.affiliationUniv Estado do, Adolescent Hlth Care Unit, Div Pediat Rheumatol, Rio De Janeiro, Brazil-
dc.description.affiliationUniv Sao Paulo, Fac Med, Childrens Inst, Dept Pediat,Pediat Rheumatol Unit, Sao Paulo, Brazil-
dc.description.affiliationChildrens Inst, Pediat Rheumatol Unit, Sao Paulo, Brazil-
dc.description.affiliationClin Pediat I, Cluj Napoca, Romania-
dc.description.affiliationInst Rheumatol, Belgrade, Serbia-
dc.description.affiliationUniv Childrens Hosp, Univ Med Ctr Ljubljana, Ljubljana, Slovenia-
dc.description.affiliationHead Rheumatol Hosp Pedro Elizalde, Buenos Aires, DF, Argentina-
dc.description.affiliationHosp Gen Mexico City, Mexico City, DF, Mexico-
dc.description.affiliationHosp Infantil Mexico Fed Gomez, Mexico City, DF, Mexico-
dc.description.affiliationHosp San Juan Dios, Barcelona, Spain-
dc.description.affiliationHosp Univ Valle Hebron, Barcelona, Spain-
dc.description.affiliationMt Sinai Med Ctr, New York, NY 10029 USA-
dc.description.affiliationMt Sinai Med Ctr, Miami Beach, FL 33140 USA-
dc.description.affiliationComplejo Hosp Univ Ruiz & Paez, Bolivar, Venezuela-
dc.description.affiliationHacettepe Univ, Dept Pediat, Ankara, Turkey-
dc.description.affiliationIstanbul Univ, Cerrahpasa Med Sch, Istanbul, Turkey-
dc.description.affiliationFMF Arthrit Vasculitis & Orphan Dis Res Ctr, Inst Hlth Sci, Ankara, Turkey-
dc.description.affiliationUniv Calgary, Dept Pediat, Alberta Childrens Hosp, Res Inst, Calgary, AB T2N 1N4, Canada-
dc.description.affiliationUnespUniv Estadual Paulista, UNESP, Botucatu, SP, Brazil-
dc.identifier.doi10.1186/1546-0096-12-49-
dc.identifier.wosWOS:000346520700001-
dc.rights.accessRightsAcesso aberto-
dc.identifier.fileWOS000346520700001.pdf-
dc.relation.ispartofPediatric Rheumatology-
Appears in Collections:Artigos, TCCs, Teses e Dissertações da Unesp

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