Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
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 syste...
Gespeichert in:
| Veröffentlicht in: | Pediatric Rheumatology 2014-11, Vol.12 (1), p.49-49, Article 49 |
|---|---|
| Hauptverfasser: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
| Format: | Artikel |
| Sprache: | eng |
| Schlagworte: | |
| Online-Zugang: | Volltext |
| Tags: |
Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
|
| container_end_page | 49 |
|---|---|
| container_issue | 1 |
| container_start_page | 49 |
| container_title | Pediatric Rheumatology |
| container_volume | 12 |
| creator | Moorthy, Lakshmi Nandini Roy, Elizabeth Kurra, Vamsi Peterson, Margaret G E Hassett, Afton L Lehman, Thomas J A 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 |
| description | 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.
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.
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. |
| doi_str_mv | 10.1186/1546-0096-12-49 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_4334772</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>1658425420</sourcerecordid><originalsourceid>FETCH-LOGICAL-b522t-fa8cdb17245602ea57c571cd3bec536313af1b80e8cb70a221b62bf700dbe7a33</originalsourceid><addsrcrecordid>eNp1Uk1v1DAQjRCIlsKZG7LEhUuoP-I4ywEJKqBIlbjA2Ro7k11XTry1HaT9K_xanN1l1SI4WJ7xvHnzPDNV9ZLRt4x17SWTTVtTumprxutm9ag6P708vmefVc9SuqVUSqrk0-qMS0UlE9159esawecNieghY0_uZvAu70gYiHcDkhEhzRGJm0japYyjs2SLvYMcixU3OI-Qi9W7VJCYCEw9cTmRHGFKhdOFieRQ4sOAEadMPEzrGdaY3hVs4c0Ypz0MPLHBezAh7v3n1ZMBfMIXx_ui-vH50_er6_rm25evVx9uaiM5z_UAne0NU7yRLeUIUlmpmO2FQStFK5iAgZmOYmeNosA5My03g6K0N6hAiIvq_YF3O5sRe1tERvB6G90IcacDOP0wMrmNXoefuhGiUYoXAnYgsGm2OqLFaCHvE0_OcjhVXAsqhaIl5-Mhx7jwn6IPIzaMepmnXuapGdfNqpC8OSqP4W7GlPXoksXSwwnDnDRrZddw2fCl3uu_oLdhLo33C0rIVqy6hhXU5fEnMaQUcTgJYlQvC_cPCa_uN--E_7Nh4jc1jNXM</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1635639841</pqid></control><display><type>article</type><title>Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration</title><source>MEDLINE</source><source>DOAJ Directory of Open Access Journals</source><source>Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals</source><source>SpringerNature Journals</source><source>PubMed Central Open Access</source><source>Recercat</source><source>PubMed Central</source><source>Springer Nature OA/Free Journals</source><creator>Moorthy, Lakshmi Nandini ; Roy, Elizabeth ; Kurra, Vamsi ; Peterson, Margaret G E ; Hassett, Afton L ; Lehman, Thomas J A ; 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</creator><creatorcontrib>Moorthy, Lakshmi Nandini ; Roy, Elizabeth ; Kurra, Vamsi ; Peterson, Margaret G E ; Hassett, Afton L ; Lehman, Thomas J A ; 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 ; Members of our collaborative group</creatorcontrib><description>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.
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.
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.</description><identifier>ISSN: 1546-0096</identifier><identifier>EISSN: 1546-0096</identifier><identifier>DOI: 10.1186/1546-0096-12-49</identifier><identifier>PMID: 25705138</identifier><language>eng</language><publisher>England: BioMed Central</publisher><subject>Adolescent ; Antirheumatic Agents - therapeutic use ; Child ; Child, Preschool ; Children & youth ; Feasibility Studies ; Female ; Hospitals ; Humans ; Immunosuppressive Agents - therapeutic use ; Inflamació ; Inflammation ; International Cooperation ; Language ; Male ; Pediatric rheumatology ; Psychometrics ; Qualitat de vida ; Quality of life ; Quality of Life - psychology ; Ratings & rankings ; Research Design ; Reumatologia pediàtrica ; Rheumatic Diseases - drug therapy ; Rheumatic Diseases - psychology ; Short Report ; Surveys and Questionnaires ; Translating ; Treatment Outcome</subject><ispartof>Pediatric Rheumatology, 2014-11, Vol.12 (1), p.49-49, Article 49</ispartof><rights>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.</rights><rights>cc-by (c) Moorthy, L.N. et al., 2014 info:eu-repo/semantics/openAccess <a href="http://creativecommons.org/licenses/by/3.0/es">http://creativecommons.org/licenses/by/3.0/es</a></rights><rights>Moorthy et al.; licensee BioMed Central Ltd. 2014</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b522t-fa8cdb17245602ea57c571cd3bec536313af1b80e8cb70a221b62bf700dbe7a33</citedby><cites>FETCH-LOGICAL-b522t-fa8cdb17245602ea57c571cd3bec536313af1b80e8cb70a221b62bf700dbe7a33</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4334772/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4334772/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,315,729,782,786,866,887,26981,27931,27932,53798,53800</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/25705138$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Moorthy, Lakshmi Nandini</creatorcontrib><creatorcontrib>Roy, Elizabeth</creatorcontrib><creatorcontrib>Kurra, Vamsi</creatorcontrib><creatorcontrib>Peterson, Margaret G E</creatorcontrib><creatorcontrib>Hassett, Afton L</creatorcontrib><creatorcontrib>Lehman, Thomas J A</creatorcontrib><creatorcontrib>Scott, Christiaan</creatorcontrib><creatorcontrib>El-Ghoneimy, Dalia</creatorcontrib><creatorcontrib>Saad, Shereen</creatorcontrib><creatorcontrib>El Feky, Reem</creatorcontrib><creatorcontrib>Al-Mayouf, Sulaiman</creatorcontrib><creatorcontrib>Dolezalova, Pavla</creatorcontrib><creatorcontrib>Malcova, Hana</creatorcontrib><creatorcontrib>Herlin, Troels</creatorcontrib><creatorcontrib>Nielsen, Susan</creatorcontrib><creatorcontrib>Wulffraat, Nico</creatorcontrib><creatorcontrib>van Royen, Annet</creatorcontrib><creatorcontrib>Marks, Stephen D</creatorcontrib><creatorcontrib>Belot, Alexandre</creatorcontrib><creatorcontrib>Brunner, Jurgen</creatorcontrib><creatorcontrib>Huemer, Christian</creatorcontrib><creatorcontrib>Foeldvari, Ivan</creatorcontrib><creatorcontrib>Horneff, Gerd</creatorcontrib><creatorcontrib>Saurenman, Traudel</creatorcontrib><creatorcontrib>Schroeder, Silke</creatorcontrib><creatorcontrib>Pratsidou-Gertsi, Polyxeni</creatorcontrib><creatorcontrib>Trachana, Maria</creatorcontrib><creatorcontrib>Uziel, Yosef</creatorcontrib><creatorcontrib>Aggarwal, Amita</creatorcontrib><creatorcontrib>Constantin, Tamas</creatorcontrib><creatorcontrib>Cimaz, Rolando</creatorcontrib><creatorcontrib>Giani, Theresa</creatorcontrib><creatorcontrib>Cantarini, Luca</creatorcontrib><creatorcontrib>Falcini, Fernanda</creatorcontrib><creatorcontrib>Manzoni, Silvia Magni</creatorcontrib><creatorcontrib>Ravelli, Angelo</creatorcontrib><creatorcontrib>Rigante, Donato</creatorcontrib><creatorcontrib>Zulian, Fracnceso</creatorcontrib><creatorcontrib>Miyamae, Takako</creatorcontrib><creatorcontrib>Yokota, Shumpei</creatorcontrib><creatorcontrib>Sato, Juliana</creatorcontrib><creatorcontrib>Magalhaes, Claudia S</creatorcontrib><creatorcontrib>Len, Claudio A</creatorcontrib><creatorcontrib>Appenzeller, Simone</creatorcontrib><creatorcontrib>Knupp, Sheila Oliveira</creatorcontrib><creatorcontrib>Rodrigues, Marta Cristine</creatorcontrib><creatorcontrib>Sztajnbok, Flavio</creatorcontrib><creatorcontrib>de Almeida, Rozana Gasparello</creatorcontrib><creatorcontrib>de Jesus, Adriana Almeida</creatorcontrib><creatorcontrib>de Arruda Campos, Lucia Maria</creatorcontrib><creatorcontrib>Silva, Clovis</creatorcontrib><creatorcontrib>Lazar, Calin</creatorcontrib><creatorcontrib>Susic, Gordana</creatorcontrib><creatorcontrib>Avcin, Tadej</creatorcontrib><creatorcontrib>Cuttica, Ruben</creatorcontrib><creatorcontrib>Burgos-Vargas, Ruben</creatorcontrib><creatorcontrib>Faugier, Enrique</creatorcontrib><creatorcontrib>Anton, Jordi</creatorcontrib><creatorcontrib>Modesto, Consuelo</creatorcontrib><creatorcontrib>Vazquez, Liza</creatorcontrib><creatorcontrib>Barillas, Lilliana</creatorcontrib><creatorcontrib>Barinstein, Laura</creatorcontrib><creatorcontrib>Sterba, Gary</creatorcontrib><creatorcontrib>Maldonado, Irama</creatorcontrib><creatorcontrib>Ozen, Seza</creatorcontrib><creatorcontrib>Kasapcopur, Ozgur</creatorcontrib><creatorcontrib>Demirkaya, Erkan</creatorcontrib><creatorcontrib>Benseler, Susa</creatorcontrib><creatorcontrib>Members of our collaborative group</creatorcontrib><title>Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration</title><title>Pediatric Rheumatology</title><addtitle>Pediatr Rheumatol Online J</addtitle><description>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.
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.
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.</description><subject>Adolescent</subject><subject>Antirheumatic Agents - therapeutic use</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Children & youth</subject><subject>Feasibility Studies</subject><subject>Female</subject><subject>Hospitals</subject><subject>Humans</subject><subject>Immunosuppressive Agents - therapeutic use</subject><subject>Inflamació</subject><subject>Inflammation</subject><subject>International Cooperation</subject><subject>Language</subject><subject>Male</subject><subject>Pediatric rheumatology</subject><subject>Psychometrics</subject><subject>Qualitat de vida</subject><subject>Quality of life</subject><subject>Quality of Life - psychology</subject><subject>Ratings & rankings</subject><subject>Research Design</subject><subject>Reumatologia pediàtrica</subject><subject>Rheumatic Diseases - drug therapy</subject><subject>Rheumatic Diseases - psychology</subject><subject>Short Report</subject><subject>Surveys and Questionnaires</subject><subject>Translating</subject><subject>Treatment Outcome</subject><issn>1546-0096</issn><issn>1546-0096</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>AAFGM</sourceid><sourceid>ABUWG</sourceid><sourceid>ADZZV</sourceid><sourceid>AFKRA</sourceid><sourceid>AGAJT</sourceid><sourceid>AQTIP</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>PQCXX</sourceid><sourceid>XX2</sourceid><recordid>eNp1Uk1v1DAQjRCIlsKZG7LEhUuoP-I4ywEJKqBIlbjA2Ro7k11XTry1HaT9K_xanN1l1SI4WJ7xvHnzPDNV9ZLRt4x17SWTTVtTumprxutm9ag6P708vmefVc9SuqVUSqrk0-qMS0UlE9159esawecNieghY0_uZvAu70gYiHcDkhEhzRGJm0japYyjs2SLvYMcixU3OI-Qi9W7VJCYCEw9cTmRHGFKhdOFieRQ4sOAEadMPEzrGdaY3hVs4c0Ypz0MPLHBezAh7v3n1ZMBfMIXx_ui-vH50_er6_rm25evVx9uaiM5z_UAne0NU7yRLeUIUlmpmO2FQStFK5iAgZmOYmeNosA5My03g6K0N6hAiIvq_YF3O5sRe1tERvB6G90IcacDOP0wMrmNXoefuhGiUYoXAnYgsGm2OqLFaCHvE0_OcjhVXAsqhaIl5-Mhx7jwn6IPIzaMepmnXuapGdfNqpC8OSqP4W7GlPXoksXSwwnDnDRrZddw2fCl3uu_oLdhLo33C0rIVqy6hhXU5fEnMaQUcTgJYlQvC_cPCa_uN--E_7Nh4jc1jNXM</recordid><startdate>20141125</startdate><enddate>20141125</enddate><creator>Moorthy, Lakshmi Nandini</creator><creator>Roy, Elizabeth</creator><creator>Kurra, Vamsi</creator><creator>Peterson, Margaret G E</creator><creator>Hassett, Afton L</creator><creator>Lehman, Thomas J A</creator><creator>Scott, Christiaan</creator><creator>El-Ghoneimy, Dalia</creator><creator>Saad, Shereen</creator><creator>El Feky, Reem</creator><creator>Al-Mayouf, Sulaiman</creator><creator>Dolezalova, Pavla</creator><creator>Malcova, Hana</creator><creator>Herlin, Troels</creator><creator>Nielsen, Susan</creator><creator>Wulffraat, Nico</creator><creator>van Royen, Annet</creator><creator>Marks, Stephen D</creator><creator>Belot, Alexandre</creator><creator>Brunner, Jurgen</creator><creator>Huemer, Christian</creator><creator>Foeldvari, Ivan</creator><creator>Horneff, Gerd</creator><creator>Saurenman, Traudel</creator><creator>Schroeder, Silke</creator><creator>Pratsidou-Gertsi, Polyxeni</creator><creator>Trachana, Maria</creator><creator>Uziel, Yosef</creator><creator>Aggarwal, Amita</creator><creator>Constantin, Tamas</creator><creator>Cimaz, Rolando</creator><creator>Giani, Theresa</creator><creator>Cantarini, Luca</creator><creator>Falcini, Fernanda</creator><creator>Manzoni, Silvia Magni</creator><creator>Ravelli, Angelo</creator><creator>Rigante, Donato</creator><creator>Zulian, Fracnceso</creator><creator>Miyamae, Takako</creator><creator>Yokota, Shumpei</creator><creator>Sato, Juliana</creator><creator>Magalhaes, Claudia S</creator><creator>Len, Claudio A</creator><creator>Appenzeller, Simone</creator><creator>Knupp, Sheila Oliveira</creator><creator>Rodrigues, Marta Cristine</creator><creator>Sztajnbok, Flavio</creator><creator>de Almeida, Rozana Gasparello</creator><creator>de Jesus, Adriana Almeida</creator><creator>de Arruda Campos, Lucia Maria</creator><creator>Silva, Clovis</creator><creator>Lazar, Calin</creator><creator>Susic, Gordana</creator><creator>Avcin, Tadej</creator><creator>Cuttica, Ruben</creator><creator>Burgos-Vargas, Ruben</creator><creator>Faugier, Enrique</creator><creator>Anton, Jordi</creator><creator>Modesto, Consuelo</creator><creator>Vazquez, Liza</creator><creator>Barillas, Lilliana</creator><creator>Barinstein, Laura</creator><creator>Sterba, Gary</creator><creator>Maldonado, Irama</creator><creator>Ozen, Seza</creator><creator>Kasapcopur, Ozgur</creator><creator>Demirkaya, Erkan</creator><creator>Benseler, Susa</creator><general>BioMed Central</general><general>BioMed Central Ltd</general><general>BioMedCentral</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>AAENX</scope><scope>AAFGM</scope><scope>ABUWG</scope><scope>ADAJB</scope><scope>ADZZV</scope><scope>AFCXM</scope><scope>AFKRA</scope><scope>AGAJT</scope><scope>AGBVP</scope><scope>AQTIP</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>PIMPY</scope><scope>PQCXX</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>XX2</scope><scope>5PM</scope></search><sort><creationdate>20141125</creationdate><title>Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration</title><author>Moorthy, Lakshmi Nandini ; Roy, Elizabeth ; Kurra, Vamsi ; Peterson, Margaret G E ; Hassett, Afton L ; Lehman, Thomas J A ; 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><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-b522t-fa8cdb17245602ea57c571cd3bec536313af1b80e8cb70a221b62bf700dbe7a33</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Adolescent</topic><topic>Antirheumatic Agents - therapeutic use</topic><topic>Child</topic><topic>Child, Preschool</topic><topic>Children & youth</topic><topic>Feasibility Studies</topic><topic>Female</topic><topic>Hospitals</topic><topic>Humans</topic><topic>Immunosuppressive Agents - therapeutic use</topic><topic>Inflamació</topic><topic>Inflammation</topic><topic>International Cooperation</topic><topic>Language</topic><topic>Male</topic><topic>Pediatric rheumatology</topic><topic>Psychometrics</topic><topic>Qualitat de vida</topic><topic>Quality of life</topic><topic>Quality of Life - psychology</topic><topic>Ratings & rankings</topic><topic>Research Design</topic><topic>Reumatologia pediàtrica</topic><topic>Rheumatic Diseases - drug therapy</topic><topic>Rheumatic Diseases - psychology</topic><topic>Short Report</topic><topic>Surveys and Questionnaires</topic><topic>Translating</topic><topic>Treatment Outcome</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Moorthy, Lakshmi Nandini</creatorcontrib><creatorcontrib>Roy, Elizabeth</creatorcontrib><creatorcontrib>Kurra, Vamsi</creatorcontrib><creatorcontrib>Peterson, Margaret G E</creatorcontrib><creatorcontrib>Hassett, Afton L</creatorcontrib><creatorcontrib>Lehman, Thomas J A</creatorcontrib><creatorcontrib>Scott, Christiaan</creatorcontrib><creatorcontrib>El-Ghoneimy, Dalia</creatorcontrib><creatorcontrib>Saad, Shereen</creatorcontrib><creatorcontrib>El Feky, Reem</creatorcontrib><creatorcontrib>Al-Mayouf, Sulaiman</creatorcontrib><creatorcontrib>Dolezalova, Pavla</creatorcontrib><creatorcontrib>Malcova, Hana</creatorcontrib><creatorcontrib>Herlin, Troels</creatorcontrib><creatorcontrib>Nielsen, Susan</creatorcontrib><creatorcontrib>Wulffraat, Nico</creatorcontrib><creatorcontrib>van Royen, Annet</creatorcontrib><creatorcontrib>Marks, Stephen D</creatorcontrib><creatorcontrib>Belot, Alexandre</creatorcontrib><creatorcontrib>Brunner, Jurgen</creatorcontrib><creatorcontrib>Huemer, Christian</creatorcontrib><creatorcontrib>Foeldvari, Ivan</creatorcontrib><creatorcontrib>Horneff, Gerd</creatorcontrib><creatorcontrib>Saurenman, Traudel</creatorcontrib><creatorcontrib>Schroeder, Silke</creatorcontrib><creatorcontrib>Pratsidou-Gertsi, Polyxeni</creatorcontrib><creatorcontrib>Trachana, Maria</creatorcontrib><creatorcontrib>Uziel, Yosef</creatorcontrib><creatorcontrib>Aggarwal, Amita</creatorcontrib><creatorcontrib>Constantin, Tamas</creatorcontrib><creatorcontrib>Cimaz, Rolando</creatorcontrib><creatorcontrib>Giani, Theresa</creatorcontrib><creatorcontrib>Cantarini, Luca</creatorcontrib><creatorcontrib>Falcini, Fernanda</creatorcontrib><creatorcontrib>Manzoni, Silvia Magni</creatorcontrib><creatorcontrib>Ravelli, Angelo</creatorcontrib><creatorcontrib>Rigante, Donato</creatorcontrib><creatorcontrib>Zulian, Fracnceso</creatorcontrib><creatorcontrib>Miyamae, Takako</creatorcontrib><creatorcontrib>Yokota, Shumpei</creatorcontrib><creatorcontrib>Sato, Juliana</creatorcontrib><creatorcontrib>Magalhaes, Claudia S</creatorcontrib><creatorcontrib>Len, Claudio A</creatorcontrib><creatorcontrib>Appenzeller, Simone</creatorcontrib><creatorcontrib>Knupp, Sheila Oliveira</creatorcontrib><creatorcontrib>Rodrigues, Marta Cristine</creatorcontrib><creatorcontrib>Sztajnbok, Flavio</creatorcontrib><creatorcontrib>de Almeida, Rozana Gasparello</creatorcontrib><creatorcontrib>de Jesus, Adriana Almeida</creatorcontrib><creatorcontrib>de Arruda Campos, Lucia Maria</creatorcontrib><creatorcontrib>Silva, Clovis</creatorcontrib><creatorcontrib>Lazar, Calin</creatorcontrib><creatorcontrib>Susic, Gordana</creatorcontrib><creatorcontrib>Avcin, Tadej</creatorcontrib><creatorcontrib>Cuttica, Ruben</creatorcontrib><creatorcontrib>Burgos-Vargas, Ruben</creatorcontrib><creatorcontrib>Faugier, Enrique</creatorcontrib><creatorcontrib>Anton, Jordi</creatorcontrib><creatorcontrib>Modesto, Consuelo</creatorcontrib><creatorcontrib>Vazquez, Liza</creatorcontrib><creatorcontrib>Barillas, Lilliana</creatorcontrib><creatorcontrib>Barinstein, Laura</creatorcontrib><creatorcontrib>Sterba, Gary</creatorcontrib><creatorcontrib>Maldonado, Irama</creatorcontrib><creatorcontrib>Ozen, Seza</creatorcontrib><creatorcontrib>Kasapcopur, Ozgur</creatorcontrib><creatorcontrib>Demirkaya, Erkan</creatorcontrib><creatorcontrib>Benseler, Susa</creatorcontrib><creatorcontrib>Members of our collaborative group</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Access via ProQuest (Open Access)</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><collection>Recercat</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Pediatric Rheumatology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Moorthy, Lakshmi Nandini</au><au>Roy, Elizabeth</au><au>Kurra, Vamsi</au><au>Peterson, Margaret G E</au><au>Hassett, Afton L</au><au>Lehman, Thomas J A</au><au>Scott, Christiaan</au><au>El-Ghoneimy, Dalia</au><au>Saad, Shereen</au><au>El Feky, Reem</au><au>Al-Mayouf, Sulaiman</au><au>Dolezalova, Pavla</au><au>Malcova, Hana</au><au>Herlin, Troels</au><au>Nielsen, Susan</au><au>Wulffraat, Nico</au><au>van Royen, Annet</au><au>Marks, Stephen D</au><au>Belot, Alexandre</au><au>Brunner, Jurgen</au><au>Huemer, Christian</au><au>Foeldvari, Ivan</au><au>Horneff, Gerd</au><au>Saurenman, Traudel</au><au>Schroeder, Silke</au><au>Pratsidou-Gertsi, Polyxeni</au><au>Trachana, Maria</au><au>Uziel, Yosef</au><au>Aggarwal, Amita</au><au>Constantin, Tamas</au><au>Cimaz, Rolando</au><au>Giani, Theresa</au><au>Cantarini, Luca</au><au>Falcini, Fernanda</au><au>Manzoni, Silvia Magni</au><au>Ravelli, Angelo</au><au>Rigante, Donato</au><au>Zulian, Fracnceso</au><au>Miyamae, Takako</au><au>Yokota, Shumpei</au><au>Sato, Juliana</au><au>Magalhaes, Claudia S</au><au>Len, Claudio A</au><au>Appenzeller, Simone</au><au>Knupp, Sheila Oliveira</au><au>Rodrigues, Marta Cristine</au><au>Sztajnbok, Flavio</au><au>de Almeida, Rozana Gasparello</au><au>de Jesus, Adriana Almeida</au><au>de Arruda Campos, Lucia Maria</au><au>Silva, Clovis</au><au>Lazar, Calin</au><au>Susic, Gordana</au><au>Avcin, Tadej</au><au>Cuttica, Ruben</au><au>Burgos-Vargas, Ruben</au><au>Faugier, Enrique</au><au>Anton, Jordi</au><au>Modesto, Consuelo</au><au>Vazquez, Liza</au><au>Barillas, Lilliana</au><au>Barinstein, Laura</au><au>Sterba, Gary</au><au>Maldonado, Irama</au><au>Ozen, Seza</au><au>Kasapcopur, Ozgur</au><au>Demirkaya, Erkan</au><au>Benseler, Susa</au><aucorp>Members of our collaborative group</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration</atitle><jtitle>Pediatric Rheumatology</jtitle><addtitle>Pediatr Rheumatol Online J</addtitle><date>2014-11-25</date><risdate>2014</risdate><volume>12</volume><issue>1</issue><spage>49</spage><epage>49</epage><pages>49-49</pages><artnum>49</artnum><issn>1546-0096</issn><eissn>1546-0096</eissn><abstract>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.
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.
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.</abstract><cop>England</cop><pub>BioMed Central</pub><pmid>25705138</pmid><doi>10.1186/1546-0096-12-49</doi><tpages>1</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1546-0096 |
| ispartof | Pediatric Rheumatology, 2014-11, Vol.12 (1), p.49-49, Article 49 |
| issn | 1546-0096 1546-0096 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_4334772 |
| source | MEDLINE; DOAJ Directory of Open Access Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; SpringerNature Journals; PubMed Central Open Access; Recercat; PubMed Central; Springer Nature OA/Free Journals |
| subjects | Adolescent Antirheumatic Agents - therapeutic use Child Child, Preschool Children & youth Feasibility Studies Female Hospitals Humans Immunosuppressive Agents - therapeutic use Inflamació Inflammation International Cooperation Language Male Pediatric rheumatology Psychometrics Qualitat de vida Quality of life Quality of Life - psychology Ratings & rankings Research Design Reumatologia pediàtrica Rheumatic Diseases - drug therapy Rheumatic Diseases - psychology Short Report Surveys and Questionnaires Translating Treatment Outcome |
| title | Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-12-08T12%3A22%3A17IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_pubme&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Health%20related%20quality%20of%20life%20measure%20in%20systemic%20pediatric%20rheumatic%20diseases%20and%20its%20translation%20to%20different%20languages:%20an%20international%20collaboration&rft.jtitle=Pediatric%20Rheumatology&rft.au=Moorthy,%20Lakshmi%20Nandini&rft.aucorp=Members%20of%20our%20collaborative%20group&rft.date=2014-11-25&rft.volume=12&rft.issue=1&rft.spage=49&rft.epage=49&rft.pages=49-49&rft.artnum=49&rft.issn=1546-0096&rft.eissn=1546-0096&rft_id=info:doi/10.1186/1546-0096-12-49&rft_dat=%3Cproquest_pubme%3E1658425420%3C/proquest_pubme%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=1635639841&rft_id=info:pmid/25705138&rfr_iscdi=true |