Artigo
Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
Registro en:
Pediatric Rheumatology. London: Biomed Central Ltd, v. 12, 6 p., 2014.
1546-0096
10.1186/1546-0096-12-49
WOS:000346520700001
WOS000346520700001.pdf
7098310008371632
0000-0002-7631-7093
Autor
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 [UNESP]
Magalhaes, Claudia S. [UNESP]
Len, Claudio A.
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
Resumen
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. 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