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http://hdl.handle.net/2445/119630
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, Susanne M. |
Keywords: | Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation 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: https://doi.org/10.1186/1546-0096-12-49 |
It is part of: | Pediatric Rheumatology, 2014, vol. 12, num. 49 |
URI: | http://hdl.handle.net/2445/119630 |
Related resource: | https://doi.org/10.1186/1546-0096-12-49 |
ISSN: | 1546-0096 |
Appears in Collections: | Articles publicats en revistes (Cirurgia i Especialitats Medicoquirúrgiques) |
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