Please use this identifier to cite or link to this item: https://repositorio.unifesp.br/handle/11600/38467
Title: Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
Authors: Moorthy, Lakshmi Nandini
Roy, Elizabeth
Kurra, Vamsi
Peterson, Margaret G. E.
Hassett, Afton L.
Lehman, Thomas J. A.
Scot, Christiaan
El-Ghoneimy, Dalia
Saad, Shereen
El Feky, Reem
Al-Mayouf, Sulaiman
Dolezalova, Pavla
Malcova, Hana
Herlin, Troels
Nielsen, Susan
Wulffraat, Nico
van Royen, Annet
Marks, Stephen D.
Belot, Alexandre
Brunner, Jurgen
Huemer, Christian
Foeldvari, Ivan
Horneff, Gerd
Saurenman, Traudel
Schroeder, Silke
Pratsidou-Gertsi, Polyxeni
Trachana, Maria
Uziel, Yosef
Aggarwal, Amita
Constantin, Tamas
Cimaz, Rolando
Giani, Theresa
Cantarini, Luca
Falcini, Fernanda
Manzoni, Silvia Magni
Ravelli, Angelo
Rigante, Donato
Zulian, Fracnceso
Miyamae, Takako
Yokota, Shumpei
Sato, Juliana
Magalhaes, Claudia S.
Len, Claudio Arnaldo [UNIFESP]
Appenzeller, Simone
Knupp, Sheila Oliveira
Rodrigues, Marta Cristine
Sztajnbok, Flavio
Almeida, Rozana Gasparello de
Jesus, Adriana Almeida de
Arruda Campos, Lucia Maria de
Silva, Clovis
Lazar, Calin
Susic, Gordana
Avcin, Tadej
Cuttica, Ruben
Burgos-Vargas, Ruben
Faugier, Enrique
Anton, Jordi
Modesto, Consuelo
Vazquez, Liza
Barillas, Lilliana
Barinstein, Laura
Sterba, Gary
Maldonado, Irama
Ozen, Seza
Kasapcopur, Ozgur
Demirkaya, Erkan
Benseler, Susa
Collaborative Grp
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 de São Paulo (USP)
Universidade Federal de São Paulo (UNIFESP)
Universidade Estadual de Campinas (UNICAMP)
Universidade Federal do Rio de Janeiro (UFRJ)
Univ Estado do
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
Issue Date: 25-Nov-2014
Publisher: Biomed Central Ltd
Citation: Pediatric Rheumatology. London: Biomed Central Ltd, v. 12, 6 p., 2014.
Abstract: 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.
URI: http://repositorio.unifesp.br/handle/11600/38467
ISSN: 1546-0096
Other Identifiers: http://dx.doi.org/10.1186/1546-0096-12-49
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