Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Lakshmi Nandini Moorthy; Elizabeth Roy; Vamsi Kurra; Margaret G E Peterson; Afton L Hassett; Thomas J A Lehman; Christiaan Scott; Dalia El-Ghoneimy; Shereen Saad; Reem El Feky; Sulaiman Al-Mayouf; Pavla Dolezalova; Hana Malcova; Troels Herlin; Susan Nielsen; Nico Wulffraat; Annet van Royen; Stephen D Marks; Alexandre Belot; Jurgen Brunner; Christian Huemer; Ivan Foeldvari; Gerd Horneff; Traudel Saurenman; Silke Schroeder; Polyxeni Pratsidou-Gertsi; Maria Trachana; Yosef Uziel; Amita Aggarwal; Tamas Constantin; Rolando Cimaz; Theresa Giani; Luca Cantarini; Fernanda Falcini; Silvia Magni Manzoni; Angelo Ravelli; Donato Rigante; Fracnceso Zulian; Takako Miyamae; Shumpei Yokota; Juliana Sato; Claudia S Magalhaes; Claudio A Len; Simone Appenzeller; Sheila Oliveira Knupp; Marta Cristine Rodrigues; Flavio Sztajnbok; Rozana Gasparello de Almeida; Adriana Almeida de Jesus; Lucia Maria de Arruda Campos; Clovis Silva; Calin Lazar; Gordana Susic; Tadej Avcin; Ruben Cuttica; Ruben Burgos-Vargas; Enrique Faugier; Jordi Anton; Consuelo Modesto; Liza Vazquez; Lilliana Barillas; Laura Barinstein; Gary Sterba; Irama Maldonado; Seza Ozen; Ozgur Kasapcopur; Erkan Demirkaya; Susa Benseler

doi:10.1186/1546-0096-12-49

Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Lakshmi Nandini Moorthy, Elizabeth Roy, Vamsi Kurra, Margaret G E Peterson, Afton L Hassett, Thomas J A Lehman, Christiaan Scott, Dalia El-Ghoneimy, Shereen Saad, Reem El Feky, Sulaiman Al-Mayouf, Pavla Dolezalova, Hana Malcova, Troels Herlin, Susan Nielsen, Nico Wulffraat, Annet van Royen, Stephen D Marks, Alexandre Belot, Jurgen BrunnerChristian Huemer, Ivan Foeldvari, Gerd Horneff, Traudel Saurenman, Silke Schroeder, Polyxeni Pratsidou-Gertsi, Maria Trachana, Yosef Uziel, Amita Aggarwal, Tamas Constantin, Rolando Cimaz, Theresa Giani, Luca Cantarini, Fernanda Falcini, Silvia Magni Manzoni, Angelo Ravelli, Donato Rigante, Fracnceso Zulian, Takako Miyamae, Shumpei Yokota, Juliana Sato, Claudia S Magalhaes, Claudio A Len, Simone Appenzeller, Sheila Oliveira Knupp, Marta Cristine Rodrigues, Flavio Sztajnbok, Rozana Gasparello de Almeida, Adriana Almeida de Jesus, Lucia Maria de Arruda Campos, Clovis Silva, Calin Lazar, Gordana Susic, Tadej Avcin, Ruben Cuttica, Ruben Burgos-Vargas, Enrique Faugier, Jordi Anton, Consuelo Modesto, Liza Vazquez, Lilliana Barillas, Laura Barinstein, Gary Sterba, Irama Maldonado, Seza Ozen, Ozgur Kasapcopur, Erkan Demirkaya, Susa Benseler

Department of Paediatrics and Adolescent Medicine

7 Citations (Scopus)

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.

Original language	English
Journal	Pediatric Rheumatology Online Journal
Volume	12
Pages (from-to)	49
ISSN	1546-0096
DOIs	https://doi.org/10.1186/1546-0096-12-49
Publication status	Published - 2014

Keywords

Adolescent
Antirheumatic Agents
Child
Child, Preschool
Feasibility Studies
Female
Humans
Immunosuppressive Agents
International Cooperation
Language
Male
Psychometrics
Quality of Life
Research Design
Rheumatic Diseases
Surveys and Questionnaires
Translating
Treatment Outcome

Access to Document

10.1186/1546-0096-12-49

Cite this

Moorthy, L. N., Roy, E., Kurra, V., Peterson, M. G. E., Hassett, A. L., Lehman, T. J. A., Scott, C., El-Ghoneimy, D., Saad, S., El Feky, R., Al-Mayouf, S., Dolezalova, P., Malcova, H., Herlin, T., Nielsen, S., Wulffraat, N., van Royen, A., Marks, S. D., Belot, A., ... Benseler, S. (2014). Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration. Pediatric Rheumatology Online Journal, 12, 49. https://doi.org/10.1186/1546-0096-12-49

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 et al.
In: Pediatric Rheumatology Online Journal, Vol. 12, 2014, p. 49.

Research output: Contribution to journal › Journal article › Research › peer-review

Moorthy, LN, Roy, E, Kurra, V, Peterson, MGE, Hassett, AL, Lehman, TJA, Scott, C, El-Ghoneimy, D, Saad, S, El Feky, R, Al-Mayouf, S, Dolezalova, P, Malcova, H, Herlin, T, Nielsen, S, Wulffraat, N, van Royen, A, Marks, SD, Belot, A, Brunner, J, Huemer, C, Foeldvari, I, Horneff, G, Saurenman, T, Schroeder, S, Pratsidou-Gertsi, P, Trachana, M, Uziel, Y, Aggarwal, A, Constantin, T, Cimaz, R, Giani, T, Cantarini, L, Falcini, F, Manzoni, SM, Ravelli, A, Rigante, D, Zulian, F, Miyamae, T, Yokota, S, Sato, J, Magalhaes, CS, Len, CA, Appenzeller, S, Knupp, SO, Rodrigues, MC, Sztajnbok, F, de Almeida, RG, de Jesus, AA, de Arruda Campos, LM, Silva, C, Lazar, C, Susic, G, Avcin, T, Cuttica, R, Burgos-Vargas, R, Faugier, E, Anton, J, Modesto, C, Vazquez, L, Barillas, L, Barinstein, L, Sterba, G, Maldonado, I, Ozen, S, Kasapcopur, O, Demirkaya, E & Benseler, S 2014, 'Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration', Pediatric Rheumatology Online Journal, vol. 12, pp. 49. https://doi.org/10.1186/1546-0096-12-49

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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{\textcopyright}) to Simple Measure of Impact of Illness in Youngsters (SMILY{\textcopyright}-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY{\textcopyright}-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{\textcopyright}-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{\textcopyright}-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{\textcopyright}-Illness with its available translations may be used as useful adjuncts to clinical practice and research.",

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author = "Moorthy, {Lakshmi Nandini} and Elizabeth Roy and Vamsi Kurra and Peterson, {Margaret G E} and Hassett, {Afton L} and Lehman, {Thomas J A} and Christiaan Scott and Dalia El-Ghoneimy and Shereen Saad and {El Feky}, Reem and Sulaiman Al-Mayouf and Pavla Dolezalova and Hana Malcova and Troels Herlin and Susan Nielsen and Nico Wulffraat and {van Royen}, Annet and Marks, {Stephen D} and Alexandre Belot and Jurgen Brunner and Christian Huemer and Ivan Foeldvari and Gerd Horneff and Traudel Saurenman and Silke Schroeder and Polyxeni Pratsidou-Gertsi and Maria Trachana and Yosef Uziel and Amita Aggarwal and Tamas Constantin and Rolando Cimaz and Theresa Giani and Luca Cantarini and Fernanda Falcini and Manzoni, {Silvia Magni} and Angelo Ravelli and Donato Rigante and Fracnceso Zulian and Takako Miyamae and Shumpei Yokota and Juliana Sato and Magalhaes, {Claudia S} and Len, {Claudio A} and Simone Appenzeller and Knupp, {Sheila Oliveira} and Rodrigues, {Marta Cristine} and Flavio Sztajnbok and {de Almeida}, {Rozana Gasparello} and {de Jesus}, {Adriana Almeida} and {de Arruda Campos}, {Lucia Maria} and Clovis Silva and Calin Lazar and Gordana Susic and Tadej Avcin and Ruben Cuttica and Ruben Burgos-Vargas and Enrique Faugier and Jordi Anton and Consuelo Modesto and Liza Vazquez and Lilliana Barillas and Laura Barinstein and Gary Sterba and Irama Maldonado and Seza Ozen and Ozgur Kasapcopur and Erkan Demirkaya and Susa Benseler",

year = "2014",

doi = "10.1186/1546-0096-12-49",

language = "English",

volume = "12",

pages = "49",

journal = "Pediatric Rheumatology Online Journal",

issn = "1546-0096",

publisher = "BioMed Central",

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TY - JOUR

T1 - Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages

T2 - an international collaboration

AU - Moorthy, Lakshmi Nandini

AU - Roy, Elizabeth

AU - Kurra, Vamsi

AU - Peterson, Margaret G E

AU - Hassett, Afton L

AU - Lehman, Thomas J A

AU - Scott, Christiaan

AU - El-Ghoneimy, Dalia

AU - Saad, Shereen

AU - El Feky, Reem

AU - Al-Mayouf, Sulaiman

AU - Dolezalova, Pavla

AU - Malcova, Hana

AU - Herlin, Troels

AU - Nielsen, Susan

AU - Wulffraat, Nico

AU - van Royen, Annet

AU - Marks, Stephen D

AU - Belot, Alexandre

AU - Brunner, Jurgen

AU - Huemer, Christian

AU - Foeldvari, Ivan

AU - Horneff, Gerd

AU - Saurenman, Traudel

AU - Schroeder, Silke

AU - Pratsidou-Gertsi, Polyxeni

AU - Trachana, Maria

AU - Uziel, Yosef

AU - Aggarwal, Amita

AU - Constantin, Tamas

AU - Cimaz, Rolando

AU - Giani, Theresa

AU - Cantarini, Luca

AU - Falcini, Fernanda

AU - Manzoni, Silvia Magni

AU - Ravelli, Angelo

AU - Rigante, Donato

AU - Zulian, Fracnceso

AU - Miyamae, Takako

AU - Yokota, Shumpei

AU - Sato, Juliana

AU - Magalhaes, Claudia S

AU - Len, Claudio A

AU - Appenzeller, Simone

AU - Knupp, Sheila Oliveira

AU - Rodrigues, Marta Cristine

AU - Sztajnbok, Flavio

AU - de Almeida, Rozana Gasparello

AU - de Jesus, Adriana Almeida

AU - de Arruda Campos, Lucia Maria

AU - Silva, Clovis

AU - Lazar, Calin

AU - Susic, Gordana

AU - Avcin, Tadej

AU - Cuttica, Ruben

AU - Burgos-Vargas, Ruben

AU - Faugier, Enrique

AU - Anton, Jordi

AU - Modesto, Consuelo

AU - Vazquez, Liza

AU - Barillas, Lilliana

AU - Barinstein, Laura

AU - Sterba, Gary

AU - Maldonado, Irama

AU - Ozen, Seza

AU - Kasapcopur, Ozgur

AU - Demirkaya, Erkan

AU - Benseler, Susa

PY - 2014

Y1 - 2014

N2 - 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.

AB - 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.

KW - Adolescent

KW - Antirheumatic Agents

KW - Child

KW - Child, Preschool

KW - Feasibility Studies

KW - Female

KW - Humans

KW - Immunosuppressive Agents

KW - International Cooperation

KW - Language

KW - Male

KW - Psychometrics

KW - Quality of Life

KW - Research Design

KW - Rheumatic Diseases

KW - Surveys and Questionnaires

KW - Translating

KW - Treatment Outcome

U2 - 10.1186/1546-0096-12-49

DO - 10.1186/1546-0096-12-49

M3 - Journal article

C2 - 25705138

SN - 1546-0096

VL - 12

SP - 49

JO - Pediatric Rheumatology Online Journal

JF - Pediatric Rheumatology Online Journal

ER -

Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

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Keywords

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