Moorthy, Lakshmi Nandini ; Roy, Elizabeth ; Kurra, Vamsi ; Peterson, Margaret GE ; Hassett, Afton L ; Lehman, Thomas JA ; Scott, 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 A ; Appenzeller, Simone ; Knupp, Sheila Oliveira ; Rodrigues, Marta Cristine ; Sztajnbok, Flavio ; de Almeida, Rozana Gasparello ; de Jesus, Adriana Almeida ; de Arruda Campos, Lucia Maria ; 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 (2014) Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration Pediatric Rheumatology, 12 (1). ISSN 1546-0096
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Official URL: http://doi.org/10.1186/1546-0096-12-49
Related URL: http://dx.doi.org/10.1186/1546-0096-12-49
Abstract
Background: Rheumatic diseases in children are associated with significant morbidity andpoor health-related quality of life (HRQOL). There is no health-relatedquality of life (HRQOL) scale available specifically for children with lesscommon rheumatic diseases. These diseases share several features withsystemic 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 tochildren 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 forits appropriateness and cultural suitability. We tested SMILY©-Illnessin patients with inflammatory rheumatic diseases and then translated it into28 languages. Nineteen children (79% female, n=15) and 17 parents participated. The meanage was 12±4 years, with median disease duration of 21 months (1-172months). 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 forchildren with systemic rheumatic diseases. It is suitable for use acrossdifferent age groups and literacy levels. SMILY©-Illness with itsavailable translations may be used as useful adjuncts to clinical practiceand research.
| Item Type: | Article |
|---|---|
| Source: | Copyright of this article belongs to BioMed Central Ltd. |
| Keywords: | Systemic Lupus Erythematosus, Celiac Disease, Sarcoidosis, Rheumatic Disease, Connective Tissue Disease |
| ID Code: | 129456 |
| Deposited On: | 23 Nov 2022 10:38 |
| Last Modified: | 23 Nov 2022 10:38 |
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