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...
| Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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| Tipo de recurso: | artículo |
| Estado: | Versión publicada |
| Fecha de publicación: | 2014 |
| País: | España |
| Institución: | Universidad de Barcelona |
| Repositorio: | Dipòsit Digital de la UB |
| OAI Identifier: | oai:diposit.ub.edu:2445/119630 |
| Acceso en línea: | https://hdl.handle.net/2445/119630 |
| Access Level: | acceso abierto |
| Palabra clave: | Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life |
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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaborationMoorthy, Lakshmi NandiniRoy, ElisabethKurra, VamsiPeterson, MargaretHassett, Afton L.Lehman, Thomas J.Scott, ChristiaanEl-Ghoneimy, DaliaSaad, ShereenFeky, Reem ElAl-Mayouf, Sulaiman M.Dolezalova, PavlaMalcova, HanaHerlin, TroelsNielsen, SusanWulffraat, NicoRoyen, Annet vanMarks, StephenBelot, AlexandreBrunner, JurgenHuemer, ChristianFoeldvari, IvanHorneff, GerdSaurenman, TraudelSchroeder, SilkePratsidou, PolyxeniTrachana, MariaUziel, YosefAggarwal, AmitaConstantin, TamasCimaz, RolandoGiani, TheresaCantarini, LucaFalcini, FernandaManzoni, Silvia M.Ravelli, AngeloRigante, DonatoZulian, FrancescoMiyamae, TakakoAntón López, JordiYokota, ShumpeiSato, JulianaMagalhaes, Claudia S.Len, Claudio A.Appenzeller, SimoneKnupp, Sheila OliveiraRodrigues, Marta CristineSztajnbok, FlavioGasparello de Almeida, RozanaAlmeida de Jesus, AdrianaArruda Campos, Lucia Maria deSilva, ClovisLazar, CalinSusic, GordanaAvcin, TadejCuttica, RubenBurgos-Vargas, RubenFaugier, EnriqueModesto, ConsueloVazquez, LizaBarillas, LillianaBarinstein, LauraSterba, GaryMaldonado, IramaOzen, SezaKasapcopur, OzgurDemirkaya, ErkanBenseler, Susanne M.Reumatologia pediàtricaInflamacióQualitat de vidaPediatric rheumatologyInflammationQuality of lifeBACKGROUND: 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.BioMedCentral2014info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://hdl.handle.net/2445/119630Articles publicats en revistes (Cirurgia i Especialitats Medicoquirúrgiques)reponame:Dipòsit Digital de la UBinstname:Universidad de BarcelonaInglésReproducció del document publicat a: https://doi.org/10.1186/1546-0096-12-49Pediatric Rheumatology, 2014, vol. 12, num. 49https://doi.org/10.1186/1546-0096-12-49cc-by (c) Moorthy, L.N. et al., 2014http://creativecommons.org/licenses/by/3.0/esinfo:eu-repo/semantics/openAccessoai:diposit.ub.edu:2445/1196302026-05-27T06:46:51Z |
| dc.title.none.fl_str_mv |
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 |
| spellingShingle |
Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration Moorthy, Lakshmi Nandini Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life |
| title_short |
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_sort |
Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| dc.creator.none.fl_str_mv |
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. |
| author |
Moorthy, Lakshmi Nandini |
| author_facet |
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. |
| author_role |
author |
| author2 |
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. |
| author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
| dc.subject.none.fl_str_mv |
Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life |
| topic |
Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life |
| 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. |
| publishDate |
2014 |
| dc.date.none.fl_str_mv |
2014 |
| dc.type.none.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
| format |
article |
| status_str |
publishedVersion |
| dc.identifier.none.fl_str_mv |
https://hdl.handle.net/2445/119630 |
| url |
https://hdl.handle.net/2445/119630 |
| dc.language.none.fl_str_mv |
Inglés |
| language_invalid_str_mv |
Inglés |
| dc.relation.none.fl_str_mv |
Reproducció del document publicat a: https://doi.org/10.1186/1546-0096-12-49 Pediatric Rheumatology, 2014, vol. 12, num. 49 https://doi.org/10.1186/1546-0096-12-49 |
| dc.rights.none.fl_str_mv |
cc-by (c) Moorthy, L.N. et al., 2014 http://creativecommons.org/licenses/by/3.0/es info:eu-repo/semantics/openAccess |
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cc-by (c) Moorthy, L.N. et al., 2014 http://creativecommons.org/licenses/by/3.0/es |
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openAccess |
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application/pdf |
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BioMedCentral |
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BioMedCentral |
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Articles publicats en revistes (Cirurgia i Especialitats Medicoquirúrgiques) reponame:Dipòsit Digital de la UB instname:Universidad de Barcelona |
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Universidad de Barcelona |
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Dipòsit Digital de la UB |
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Dipòsit Digital de la UB |
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1869406260170850304 |
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15.301603 |