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

Nandini N. 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; Magni M. Manzoni; Angelo Ravelli; Donato Rigante; Fracnceso Zulian; Takako Miyamae; Shumpei Yokota; Juliana Sato; Claudia S. Magalhaes; Claudio A. Len; Simone Appenzeller; Oliveira O. Knupp; Cristine C. Rodrigues; Flavio Sztajnbok; Gasparello G. de Almeida; Almeida A. de Jesus; Maria M. 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

Nandini N. 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, Magni M. Manzoni, Angelo Ravelli, Donato Rigante, Fracnceso Zulian, Takako Miyamae, Shumpei Yokota, Juliana Sato, Claudia S. Magalhaes, Claudio A. Len, Simone Appenzeller, Oliveira O. Knupp, Cristine C. Rodrigues, Flavio Sztajnbok, Gasparello G. de Almeida, Almeida A. de Jesus, Maria M. 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

Division of Pediatrics

Rutgers Robert Wood Johnson Medical School
Rutgers University Child Health Institute of New Jersey
Hospital for Special Surger
University of Michigan, Ann Arbor
University of Cape Town
Ain Shams University
King Faisal Specialist Hospital and Research Centre
Charles University
Aarhus University
University of Copenhagen
Utrecht University
Great Ormond Street Hospital for Children NHS Foundation Trust
Université de Lyon
Innsbruck Medical University
Prim. University Doz
Head of the Hamburg Centre for Pediatric and Adolescence Rheumatology
Asklepios Clinic Sankt
University of Zurich
Aristotle University of Thessaloniki
Meir Hospital Sapir Medical Center
Sanjay Gandhi Postgraduate Institute of Medical Sciences
Semmelweis University
AOUC Azienda Ospedaliero-Universitaria Careggi
University of Siena
University of Florence
IRCCS Ospedale pediatrico Bambino Gesù - Roma
University of Genoa
Catholic University of the Sacred Heart
University of Padua
Yokohama City University
Universidade Estadual Paulista Júlio de Mesquita Filho
Universidade Federal de São Paulo
Universidade Estadual de Campinas
Universidade Federal do Rio de Janeiro
Universidade do Estado do Rio de Janeiro
Universidade de São Paulo
Children's Institute
Clinica Pediatrie I
Institute of Rheumatology
UMC - University Children's Hospital Ljubljana
Head of the Allergy Department of Pedro de Elizalde Children’s Hospital
Hospital General de Mexico
Hospital Infantil de Mexico Federico Gomez
SJD Barcelona Children's Hospital
and ARADyAL Spanish Research Network
Pediatric Rheumatology
Pediatric Rheumatology
Icahn School of Medicine at Mount Sinai
Mount Sinai Medical Center Miami Beach
Unidad de Reumatologia
Istanbul University - Cerrahpaşa
Gülhane Military Medical Academy
University of Calgary

Research output: Contribution to journal › Article › peer-review

8 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. 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
Article number	49
Journal	Pediatric Rheumatology
Volume	12
Issue number	1
DOIs	https://doi.org/10.1186/1546-0096-12-49
Publication status	Published - 25 Nov 2014

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10.1186/1546-0096-12-49

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Moorthy, N. 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, 12(1), Article 49. https://doi.org/10.1186/1546-0096-12-49

@article{362ff9427a9f44d59f5a252adad17932,

title = "Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: An international collaboration",

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. 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.",

author = "Moorthy, \{Nandini N.\} 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, \{Magni M.\} 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, \{Oliveira O.\} and Rodrigues, \{Cristine C.\} and Flavio Sztajnbok and \{de Almeida\}, \{Gasparello G.\} and \{de Jesus\}, \{Almeida A.\} and \{de Arruda Campos\}, \{Maria M.\} 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",

note = "Publisher Copyright: {\textcopyright} Moorthy et al.; licensee BioMed Central Ltd.",

year = "2014",

month = nov,

day = "25",

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

language = "English",

volume = "12",

journal = "Pediatric Rheumatology",

issn = "1546-0096",

publisher = "BioMed Central Ltd",

number = "1",

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Moorthy, NN, 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, MM, Ravelli, A, Rigante, D, Zulian, F, Miyamae, T, Yokota, S, Sato, J, Magalhaes, CS, Len, CA, Appenzeller, S, Knupp, OO, Rodrigues, CC, Sztajnbok, F, de Almeida, GG, de Jesus, AA, de Arruda Campos, MM, 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, vol. 12, no. 1, 49. https://doi.org/10.1186/1546-0096-12-49

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, Nandini N.

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, Magni M.

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, Oliveira O.

AU - Rodrigues, Cristine C.

AU - Sztajnbok, Flavio

AU - de Almeida, Gasparello G.

AU - de Jesus, Almeida A.

AU - de Arruda Campos, Maria M.

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 - 2014/11/25

Y1 - 2014/11/25

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. 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. 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.

UR - https://www.scopus.com/pages/publications/84924263216

U2 - 10.1186/1546-0096-12-49

DO - 10.1186/1546-0096-12-49

M3 - Article

C2 - 25705138

AN - SCOPUS:84924263216

SN - 1546-0096

VL - 12

JO - Pediatric Rheumatology

JF - Pediatric Rheumatology

IS - 1

M1 - 49

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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