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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: An international collaboration
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نویسنده
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moorthy l.n. ,roy e. ,kurra v. ,peterson m.g.e. ,hassett a.l. ,lehman t.j.a. ,scott c. ,el-ghoneimy d. ,saad s. ,el feky r. ,al-mayouf s. ,dolezalova p. ,malcova h. ,herlin t. ,nielsen s. ,wulffraat n. ,van royen a. ,marks s.d. ,belot a. ,brunner j. ,huemer c. ,foeldvari i. ,horneff g. ,saurenman t. ,schroeder s. ,pratsidou-gertsi p. ,trachana m. ,uziel y. ,aggarwal a. ,constantin t. ,cimaz r. ,giani t. ,cantarini l. ,falcini f. ,manzoni s.m. ,ravelli a. ,rigante d. ,zulian f. ,miyamae t. ,yokota s. ,sato j. ,magalhaes c.s. ,len c.a. ,appenzeller s. ,knupp s.o. ,rodrigues m.c. ,sztajnbok f. ,de almeida r.g. ,de jesus a.a. ,de arruda campos l.m. ,silva c. ,lazar c. ,susic g. ,avcin t. ,cuttica r. ,burgos-vargas r. ,faugier e. ,anton j. ,modesto c. ,vazquez l. ,barillas l. ,barinstein l. ,sterba g. ,maldonado i. ,ozen s. ,kasapcopur o. ,demirkaya e. ,benseler s.
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منبع
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pediatric rheumatology - 2014 - دوره : 12 - شماره : 1
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چکیده
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Background: 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) to simple measure of impact of illness in youngsters (smily-illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. we tested smily-illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. conclusion: smily-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-illness with its available translations may be used as useful adjuncts to clinical practice and research. © moorthy et al.; licensee biomed central ltd.
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آدرس
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rutgers university,robert wood johnson medical school,new brunswick,nj, United States, rutgers university child health institute of new jersey,pediatric rheumatology,89 french street,new brunswick,nj 08901, United States, rutgers university child health institute of new jersey,pediatric rheumatology,89 french street,new brunswick,nj 08901, United States, hospital for special surger,new york,ny, United States, university of michigan,ann arbor,mi, United States, hospital for special surger,new york,ny, United States, red cross war memorial children's hospital,pediatric rheumatology,cape town, South Africa, ain shams university,pediatric allergy,immunology and rheumatology unit,cairo, Egypt, ain shams university,pediatric rheumatology,pediatric allergy,immunology and rheumatology unit,cairo, Egypt, ain shams university,pediatric rheumatology,pediatric allergy,immunology and rheumatology unit,cairo, Egypt, king faisal specialist hospital and research center,riyadh, Saudi Arabia, charles university in prague and general university hospital,prague, Czech Republic, university hospital motol,pediatric department,prague, Czech Republic, aarhus university hospital skejby,pediatric rheumatology,aarhus, Denmark, juliane marie centret rigshospitalet,pediatric rheumatology,copenhagen, Denmark, university medical center,department of pediatric immunology,utrecht, Netherlands, wilhelmina children's hospital,pediatric rheumatology,utrecht, Netherlands, great ormond street hospital for children nhs foundation trust,consultant pediatric nephrologist,renal unit,london, United Kingdom, lyon university,pediatric nephrology,rheumatology and dermatology department,hospices civils de lyon,lyon, France, medical university of innsbruck,innsbruck, Austria, prim. university doz,pediatric rheumatology,bregenz, Austria, head of the hamburg centre for pediatric and adolescence rheumatology,hamburg, Germany, asklepios clinic sankt,pediatric rheumatology,augustin, Germany, zurich university children's hospital,pediatric rheumatology,zürich, Switzerland, zurich university children's hospital,pediatric rheumatology,zürich, Switzerland, aristotle university,pediatrics/pediatric rheumatology,pediatric immunology and rheumatology referral center,thessaloniki, Greece, aristotle university,pediatrics/pediatric rheumatology,pediatric immunology and rheumatology referral center,thessaloniki, Greece, israel meir hospital,kfar-saba,pediatric rheumatology,kfar saba, Israel, sanjay gandhi postgraduate institute of medical sciences,pediatric rheumatology,lucknow, India, semmelweis university,pediatric rheumatology,budapest, Hungary, anna meyer hospital,pediatric rheumatology,florence, Italy, anna meyer hospital,pediatric rheumatology,florence, Italy, university of siena,pediatric rheumatology,research center of systemic autoimmune and autoinflammatory diseases,siena, Italy, university of florence,pediatric rheumatology,florence, Italy, pediatric rheumatology unit irccs ospedale pediatrico bambino gesù,rome, Italy, university of genoa pediatria ii-reumatologia,istituto g. gaslini eular centre of excellence in rheumatology,pediatric rheumatology,genova, Italy, institute of pediatrics università cattolica sacro cuore,pediatric rheumatology,rome, Italy, university of padua,pediatric rheumatology unit,department of pediatrics,padua, Italy, yokohama city university school of medicine,yokohama, Japan, yokohama city university school of medicine,yokohama, Japan, universidade estadual paulista (unesp),pediatric rheumatology,botucatu, Brazil, universidade estadual paulista (unesp),pediatric rheumatology,botucatu, Brazil, universidade federal de sao paulo,pediatric rheumatology unit,department of pediatrics,sao paulo, Brazil, state university of campinas,rheumatology unit,department of medicine,campinas, Brazil, universidade federal do rio de janeiro,department of pediatrics,pediatric rheumatology,rio de janeiro, Brazil, universidade federal do rio de janeiro,department of pediatrics,rio de janeiro, Brazil, universidade do estado do,pediatric rheumatology division,adolescent health care unit,rio de janeiro, Brazil, universidade do estado do,pediatric rheumatology division,adolescent health care unit,rio de janeiro, Brazil, faculdade de medicina da universidade de sao paulo,department of pediatrics,pediatric rheumatology unit,children's institute,sao paulo, Brazil, faculdade de medicina da universidade de sao paulo,department of pediatrics,pediatric rheumatology unit,children's institute,sao paulo, Brazil, children's institute,pediatric rheumatology unit,sao paulo, Brazil, clinica pediatrie i,pediatric rheumatology,cluj-napoca, Romania, institute of rheumatology,pediatric rheumatology,belgrade, Serbia, university medical center ljubljana,allergy,rheumatology and clinical immunology university children's hospital,ljubljana, Slovenia, head rheumatology hospital pedro de elizalde,pediatric rheumatology,buenos aires, Argentina, hospital general de méxico,pediatric rheumatology,méxico city, Mexico, hospital infantil de méxico federico gómez,méxico city, Mexico, hospital sant joan de déu,pediatric rheumatology,barcelona, Spain, hospital universitario valle de hebron,pediatric rheumatology,barcelona, Spain, pediatric rheumatology,calle convento # 252,san juan,pr, United States, pediatric rheumatology,47 new scotland ave suite 197,albany,ny, United States, mt sinai medical center,pediatric rheumatology,new york,ny, United States, mount sinai medical center,rheumatology,miami beach,fl, United States, complejo hospitalario universitario ruiz y paez,unidad de reumatologia,pediatric rheumatology,bolivar, Venezuela, hacettepe university department of pediatrics,pediatric rheumatology,ankara, Turkey, istanbul university,pediatric rheumatology,cerrahpasa medical school,istanbul, Turkey, institute of health sciences,fmf arthritis vasculitis and orphan disease research center,gata,ankara, Turkey, university of calgary,department of pediatrics,alberta children's hospital research institute faculty of medicine,calgary,ab, Canada
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Authors
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