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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
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 feature...
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
BioMed Central
2014
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| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4334772/ https://www.ncbi.nlm.nih.gov/pubmed/25705138 http://dx.doi.org/10.1186/1546-0096-12-49 |
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| 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 |
| author_facet | 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 |
| author_sort | Moorthy, Lakshmi Nandini |
| collection | PubMed |
| description | 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/1546-0096-12-49) contains supplementary material, which is available to authorized users. |
| format | Online Article Text |
| id | pubmed-4334772 |
| institution | National Center for Biotechnology Information |
| language | English |
| publishDate | 2014 |
| publisher | BioMed Central |
| record_format | MEDLINE/PubMed |
| spelling | pubmed-43347722015-02-21 Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration 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 Pediatr Rheumatol Online J Short Report 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/1546-0096-12-49) contains supplementary material, which is available to authorized users. BioMed Central 2014-11-25 /pmc/articles/PMC4334772/ /pubmed/25705138 http://dx.doi.org/10.1186/1546-0096-12-49 Text en © Moorthy et al.; licensee BioMed Central Ltd. 2014 This article is published under license to 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. |
| spellingShingle | Short Report 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 Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| title | Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| title_full | Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| title_fullStr | Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| title_full_unstemmed | Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| title_short | Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| title_sort | health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| topic | Short Report |
| url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4334772/ https://www.ncbi.nlm.nih.gov/pubmed/25705138 http://dx.doi.org/10.1186/1546-0096-12-49 |
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