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. 2014 Nov 25:12:49.
doi: 10.1186/1546-0096-12-49. eCollection 2014.

Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Lakshmi Nandini Moorthy  1 , Elizabeth Roy  2 , Vamsi Kurra  2 , Margaret G E Peterson  3 , Afton L Hassett  4 , Thomas J A Lehman  3 , Christiaan Scott  5 , Dalia El-Ghoneimy  6 , Shereen Saad  7 , Reem El Feky  7 , Sulaiman Al-Mayouf  8 , Pavla Dolezalova  9 , Hana Malcova  10 , Troels Herlin  11 , Susan Nielsen  12 , Nico Wulffraat  13 , Annet van Royen  14 , Stephen D Marks  15 , Alexandre Belot  16 , Jurgen Brunner  17 , Christian Huemer  18 , Ivan Foeldvari  19 , Gerd Horneff  20 , Traudel Saurenman  21 , Silke Schroeder  21 , Polyxeni Pratsidou-Gertsi  22 , Maria Trachana  22 , Yosef Uziel  23 , Amita Aggarwal  24 , Tamas Constantin  25 , Rolando Cimaz  26 , Theresa Giani  26 , Luca Cantarini  27 , Fernanda Falcini  28 , Silvia Magni Manzoni  29 , Angelo Ravelli  30 , Donato Rigante  31 , Fracnceso Zulian  32 , Takako Miyamae  33 , Shumpei Yokota  33 , Juliana Sato  34 , Claudia S Magalhaes  34 , Claudio A Len  35 , Simone Appenzeller  36 , Sheila Oliveira Knupp  37 , Marta Cristine Rodrigues  38 , Flavio Sztajnbok  39 , Rozana Gasparello de Almeida  39 , Adriana Almeida de Jesus  40 , Lucia Maria de Arruda Campos  40 , Clovis Silva  41 , Calin Lazar  42 , Gordana Susic  43 , Tadej Avcin  44 , Ruben Cuttica  45 , Ruben Burgos-Vargas  46 , Enrique Faugier  47 , Jordi Anton  48 , Consuelo Modesto  49 , Liza Vazquez  50 , Lilliana Barillas  51 , Laura Barinstein  52 , Gary Sterba  53 , Irama Maldonado  54 , Seza Ozen  55 , Ozgur Kasapcopur  56 , Erkan Demirkaya  57 , Susa Benseler  58
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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Lakshmi Nandini Moorthy et al. Pediatr Rheumatol Online J. .

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.

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References

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