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Title: Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
Author: Moorthy, Lakshmi Nandini
Roy, Elisabeth
Kurra, Vamsi
Peterson, Margaret
Hassett, Afton L.
Lehman, Thomas J.
Scott, Christiaan
El-Ghoneimy, Dalia
Saad, Shereen
Feky, Reem El
Al-Mayouf, Sulaiman M.
Dolezalova, Pavla
Malcova, Hana
Herlin, Troels
Nielsen, Susan
Wulffraat, Nico
Royen, Annet van
Marks, Stephen
Belot, Alexandre
Brunner, Jurgen
Huemer, Christian
Foeldvari, Ivan
Horneff, Gerd
Saurenman, Traudel
Schroeder, Silke
Pratsidou, Polyxeni
Trachana, Maria
Uziel, Yosef
Aggarwal, Amita
Constantin, Tamas
Cimaz, Rolando
Giani, Theresa
Cantarini, Luca
Falcini, Fernanda
Manzoni, Silvia M.
Ravelli, Angelo
Rigante, Donato
Zulian, Francesco
Miyamae, Takako
Antón López, Jordi
Yokota, Shumpei
Sato, Juliana
Magalhaes, Claudia S.
Len, Claudio A.
Appenzeller, Simone
Knupp, Sheila Oliveira
Rodrigues, Marta Cristine
Sztajnbok, Flavio
Gasparello de Almeida, Rozana
Almeida de Jesus, Adriana
Arruda Campos, Lucia Maria de
Silva, Clovis
Lazar, Calin
Susic, Gordana
Avcin, Tadej
Cuttica, Ruben
Burgos-Vargas, Ruben
Faugier, Enrique
Modesto, Consuelo
Vazquez, Liza
Barillas, Lilliana
Barinstein, Laura
Sterba, Gary
Maldonado, Irama
Ozen, Seza
Kasapcopur, Ozgur
Demirkaya, Erkan
Benseler, Susa
Keywords: Reumatologia pediàtrica
Qualitat de vida
Pediatric rheumatology
Quality of life
Issue Date: 25-Nov-2014
Publisher: BioMedCentral
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©) 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. 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©-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©-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.
Note: Reproducció del document publicat a:
It is part of: Pediatric Rheumatology, 2014, vol. 12, num. 49
Related resource:
ISSN: 1546-0096
Appears in Collections:Articles publicats en revistes (Cirurgia i Especialitats Medicoquirúrgiques)

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