Abstract

Doc number: 49

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.

Details

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, 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
Publication year
2014
Publication date
2014
Publisher
BioMed Central
e-ISSN
1546-0096
Source type
Scholarly Journal
Language of publication
English
DOI
https://doi.org/10.1186/1546-0096-12-49
ProQuest document ID
1635639841
Copyright
© 2014 Moorthy et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.