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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| Format: | Article |
| Status: | Published version |
| Publication date: | 2014 |
| Country: | España |
| Institution: | Universidad de Barcelona |
| Repository: | Dipòsit Digital de la UB |
| OAI Identifier: | oai:diposit.ub.edu:2445/119630 |
| Online Access: | https://hdl.handle.net/2445/119630 |
| Access Level: | Open access |
| Keyword: | Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life |
| _version_ | 1878731996880961536 |
|---|---|
| author | Moorthy, Lakshmi Nandini |
| 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 |
| author_browse | Aggarwal, Amita Al-Mayouf, Sulaiman M. Almeida de Jesus, Adriana Antón López, Jordi Appenzeller, Simone Arruda Campos, Lucia Maria de Avcin, Tadej Barillas, Lilliana Barinstein, Laura Belot, Alexandre Benseler, Susanne M. Brunner, Jurgen Burgos-Vargas, Ruben Cantarini, Luca Cimaz, Rolando Constantin, Tamas Cuttica, Ruben Demirkaya, Erkan Dolezalova, Pavla El-Ghoneimy, Dalia Falcini, Fernanda Faugier, Enrique Feky, Reem El Foeldvari, Ivan Gasparello de Almeida, Rozana Giani, Theresa Hassett, Afton L. Herlin, Troels Horneff, Gerd Huemer, Christian Kasapcopur, Ozgur Knupp, Sheila Oliveira Kurra, Vamsi Lazar, Calin Lehman, Thomas J. Len, Claudio A. Magalhaes, Claudia S. Malcova, Hana Maldonado, Irama Manzoni, Silvia M. Marks, Stephen Miyamae, Takako Modesto, Consuelo Moorthy, Lakshmi Nandini Nielsen, Susan Ozen, Seza Peterson, Margaret Pratsidou, Polyxeni Ravelli, Angelo Rigante, Donato Rodrigues, Marta Cristine Roy, Elisabeth Royen, Annet van Saad, Shereen Sato, Juliana Saurenman, Traudel Schroeder, Silke Scott, Christiaan Silva, Clovis Sterba, Gary Susic, Gordana Sztajnbok, Flavio Trachana, Maria Uziel, Yosef Vazquez, Liza Wulffraat, Nico Yokota, Shumpei Zulian, Francesco |
| 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 |
| collection | Dipòsit Digital de la UB |
| 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. |
| eu_rights_str_mv | openAccess |
| format | article |
| id | ES_3ad1fd06d2e8564ebc161c1d9687b8e1 |
| institution | Universidad de Barcelona |
| instname_str | Universidad de Barcelona |
| network_acronym_str | ES |
| network_name_str | España |
| oai_identifier_str | oai:diposit.ub.edu:2445/119630 |
| publishDate | 2014 |
| publishDateSort | 2014 |
| publisher | BioMedCentral |
| publisherStr | BioMedCentral |
| reponame_str | Dipòsit Digital de la UB |
| spelling | Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration 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. Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life 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. BioMedCentral https://hdl.handle.net/2445/119630 |
| 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 |
| status_str | publishedVersion |
| 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 | Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life |
| topic_facet | Reumatologia pediàtrica Inflamació Qualitat de vida Pediatric rheumatology Inflammation Quality of life |
| url | https://hdl.handle.net/2445/119630 |