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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
  • Rutgers State Univ
  • Hosp Special Surg
  • Univ Michigan
  • Red Cross War Mem Childrens Hosp
  • Ain Shams Univ
  • King Faisal Specialist Hosp & Res Ctr
  • Charles Univ Prague
  • Gen Univ Hosp
  • Univ Hosp Motol
  • Aarhus Univ
  • Rigshosp
  • Univ Med Ctr
  • Wilhelmina Childrens Hosp
  • Great Ormond St Hosp Sick Children
  • Lyon Univ
  • Med Univ Innsbruck
  • Prim Univ Doz
  • Hamburg Ctr Pediat & Adolescence Rheumatol
  • Asklepios Clin Sankt
  • Univ Zurich
  • Aristotle Univ Thessaloniki
  • Israel Meir Hosp
  • Sanjay Gandhi Postgrad Inst Med Sci
  • Semmelweis Univ
  • Anna Meyer Hosp
  • Univ Siena
  • Univ Florence
  • Osped Pediat Bambino Gesu
  • Univ Genoa Pediat II Reumatol
  • Univ Cattolica Sacro Cuore
  • Univ Padua
  • Yokohama City Univ
  • Universidade Estadual Paulista (UNESP)
  • Universidade Federal de São Paulo (UNIFESP)
  • Universidade Estadual de Campinas (UNICAMP)
  • Universidade Federal do Rio de Janeiro (UFRJ)
  • Univ Estado do
  • Universidade de São Paulo (USP)
  • Childrens Inst
  • Clin Pediat I
  • Inst Rheumatol
  • Univ Childrens Hosp
  • Head Rheumatol Hosp Pedro Elizalde
  • Hosp Gen Mexico City
  • Hosp Infantil Mexico Fed Gomez
  • Hosp San Juan Dios
  • Hosp Univ Valle Hebron
  • Mt Sinai Med Ctr
  • Complejo Hosp Univ Ruiz & Paez
  • Hacettepe Univ
  • Istanbul Univ
  • FMF Arthrit Vasculitis & Orphan Dis Res Ctr
  • Univ Calgary
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 (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.
Issue Date: 
Pediatric Rheumatology. London: Biomed Central Ltd, v. 12, 6 p., 2014.
Time Duration: 
Biomed Central Ltd
Access Rights: 
Acesso aberto
Appears in Collections:Artigos, TCCs, Teses e Dissertações da Unesp

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