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

L. N. Moorthy; E. Roy; V. Kurra; M. G. E. Peterson; A. L. Hassett; T. J. A. Lehman; C. Scott; D. El-Ghoneimy; S. Saad; Feky R. El; S. Al-Mayouf; P. Dolezalova; H. Malcova; T. Herlin; S. Nielsen; N. Wulffraat; A. van Royen; S. D. Marks; A. Belot; J. Brunner; C. Huemer; I. Foeldvari; G. Horneff; T. Saurenman; S. Schroeder; P. Pratsidou-Gertsi; M. Trachana; Y. Uziel; A. Aggarwal; T. Constantin; R. Cimaz; T. Giani; L. Cantarini; F. Falcini; S. M. Manzoni; A. Ravelli; Donato Rigante; F. Zulian; T. Miyamae; S. Yokota; J. Sato; C. S. Magalhaes; C. A. Len; S. Appenzeller; S. O. Knupp; M. C. Rodrigues; F. Sztajnbok; R. G. de Almeida; A. A. de Jesus; Campos L. M. de Arruda; C. Silva; C. Lazar; G. Susic; T. Avcin; R. Cuttica; R. Burgos-Vargas; E. Faugier; J. Anton; C. Modesto; L. Vazquez; L. Barillas; L. Barinstein; G. Sterba; I. Maldonado; S. Ozen; O. Kasapcopur; E. Demirkaya; S. 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

L. N. Moorthy^*
, E. Roy
, V. Kurra
, M. G. E. Peterson
, A. L. Hassett
, T. J. A. Lehman
, C. Scott
, D. El-Ghoneimy
, S. Saad
, Feky R. El
, S. Al-Mayouf
, P. Dolezalova
, H. Malcova
, T. Herlin
, S. Nielsen
, N. Wulffraat
, A. van Royen
, S. D. Marks
, A. Belot
, J. Brunner

C. Huemer, I. Foeldvari, G. Horneff, T. Saurenman, S. Schroeder, P. Pratsidou-Gertsi, M. Trachana, Y. Uziel, A. Aggarwal, T. Constantin, R. Cimaz, T. Giani, L. Cantarini, F. Falcini, S. M. Manzoni, A. Ravelli, Donato Rigante, F. Zulian, T. Miyamae, S. Yokota, J. Sato, C. S. Magalhaes, C. A. Len, S. Appenzeller, S. O. Knupp, M. C. Rodrigues, F. Sztajnbok, R. G. de Almeida, A. A. de Jesus, Campos L. M. de Arruda, C. Silva, C. Lazar, G. Susic, T. Avcin, R. Cuttica, R. Burgos-Vargas, E. Faugier, J. Anton, C. Modesto, L. Vazquez, L. Barillas, L. Barinstein, G. Sterba, I. Maldonado, S. Ozen, O. Kasapcopur, E. Demirkaya, S. Benseler

^*Corresponding author

Child Health Institute of New Jersey
University of Cape Town
Ain Shams University
King Faisal Specialist Hospital and Research Centre
Charles University
Aarhus University
University of Copenhagen
Utrecht University
Université de Lyon
Innsbruck Medical University
Prim. University Doz, Pediatric Rheumatology
Head of the Hamburg Centre for Pediatric and Adolescence Rheumatology
Asklepios Clinic Sankt, Pediatric Rheumatology
University of Zurich
Aristotle University of Thessaloniki
Meir Hospital Sapir Medical Center
Sanjay Gandhi Postgraduate Institute of Medical Sciences
Semmelweis University
Azienda Ospedaliero Universitaria Meyer
University of Siena
University of Florence
University of Genoa
University of Padua
Yokohama City University
Universidade Estadual Paulista Júlio de Mesquita Filho
Universidade Estadual de Campinas
Universidade do Estado do Rio de Janeiro
Children's Institute, Pediatric Rheumatology Unit
Clinica Pediatrie I, Pediatric Rheumatology
Institute of Rheumatology, Pediatric Rheumatology
Hospital General de Niños Pedro de Elizalde
Hospital General de Mexico
Hospital Infantil de Mexico Federico Gomez
SJD Barcelona Children's Hospital
Vall d’Hebron University Hospital
Pediatric Rheumatology
Icahn School of Medicine at Mount Sinai
Mount Sinai Medical Center Miami Beach
Complejo Hospitalario Universitario Ruiz y Paez, Unidad de Reumatologia, Pediatric Rheumatology
Hacettepe University
Cerrahpaşa Medical Faculty
Gülhane Military Medical Academy
University of Calgary

Research output: Contribution to journal › Article

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
Pages (from-to)	1-10
Number of pages	10
Journal	PEDIATRIC RHEUMATOLOGY ONLINE JOURNAL
Volume	12
Issue number	1
DOIs	https://doi.org/10.1186/1546-0096-12-49
Publication status	Published - 2014

All Science Journal Classification (ASJC) codes

Pediatrics, Perinatology, and Child Health
Rheumatology
Immunology and Allergy

Keywords

Adolescent
Antirheumatic Agents
Child
Feasibility Studies
Female
Humans
Immunosuppressive Agents
International Cooperation
Language
Male
Preschool
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, F. 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(1), 1-10. https://doi.org/10.1186/1546-0096-12-49

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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.",

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author = "Moorthy, \{L. N.\} and E. Roy and V. Kurra and Peterson, \{M. G. E.\} and Hassett, \{A. L.\} and Lehman, \{T. J. A.\} and C. Scott and D. El-Ghoneimy and S. Saad and El, \{Feky R.\} and S. Al-Mayouf and P. Dolezalova and H. Malcova and T. Herlin and S. Nielsen and N. Wulffraat and \{van Royen\}, A. and Marks, \{S. D.\} and A. Belot and J. Brunner and C. Huemer and I. Foeldvari and G. Horneff and T. Saurenman and S. Schroeder and P. Pratsidou-Gertsi and M. Trachana and Y. Uziel and A. Aggarwal and T. Constantin and R. Cimaz and T. Giani and L. Cantarini and F. Falcini and Manzoni, \{S. M.\} and A. Ravelli and Donato Rigante and F. Zulian and T. Miyamae and S. Yokota and J. Sato and Magalhaes, \{C. S.\} and Len, \{C. A.\} and S. Appenzeller and Knupp, \{S. O.\} and Rodrigues, \{M. C.\} and F. Sztajnbok and \{de Almeida\}, \{R. G.\} and \{de Jesus\}, \{A. A.\} and \{de Arruda\}, \{Campos L. M.\} and C. Silva and C. Lazar and G. Susic and T. Avcin and R. Cuttica and R. Burgos-Vargas and E. Faugier and J. Anton and C. Modesto and L. Vazquez and L. Barillas and L. Barinstein and G. Sterba and I. Maldonado and S. Ozen and O. Kasapcopur and E. Demirkaya and S. Benseler",

year = "2014",

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

language = "English",

volume = "12",

pages = "1--10",

journal = "PEDIATRIC RHEUMATOLOGY ONLINE JOURNAL",

issn = "1546-0096",

publisher = "[Chicago. Ill. : University of Chicago, 2003]-",

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Moorthy, LN, Roy, E, Kurra, V, Peterson, MGE, Hassett, AL, Lehman, TJA, Scott, C, El-Ghoneimy, D, Saad, S, El, FR, 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, CLM, 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, no. 1, pp. 1-10. 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: An international collaboration

AU - Moorthy, L. N.

AU - Roy, E.

AU - Kurra, V.

AU - Peterson, M. G. E.

AU - Hassett, A. L.

AU - Lehman, T. J. A.

AU - Scott, C.

AU - El-Ghoneimy, D.

AU - Saad, S.

AU - El, Feky R.

AU - Al-Mayouf, S.

AU - Dolezalova, P.

AU - Malcova, H.

AU - Herlin, T.

AU - Nielsen, S.

AU - Wulffraat, N.

AU - van Royen, A.

AU - Marks, S. D.

AU - Belot, A.

AU - Brunner, J.

AU - Huemer, C.

AU - Foeldvari, I.

AU - Horneff, G.

AU - Saurenman, T.

AU - Schroeder, S.

AU - Pratsidou-Gertsi, P.

AU - Trachana, M.

AU - Uziel, Y.

AU - Aggarwal, A.

AU - Constantin, T.

AU - Cimaz, R.

AU - Giani, T.

AU - Cantarini, L.

AU - Falcini, F.

AU - Manzoni, S. M.

AU - Ravelli, A.

AU - Rigante, Donato

AU - Zulian, F.

AU - Miyamae, T.

AU - Yokota, S.

AU - Sato, J.

AU - Magalhaes, C. S.

AU - Len, C. A.

AU - Appenzeller, S.

AU - Knupp, S. O.

AU - Rodrigues, M. C.

AU - Sztajnbok, F.

AU - de Almeida, R. G.

AU - de Jesus, A. A.

AU - de Arruda, Campos L. M.

AU - Silva, C.

AU - Lazar, C.

AU - Susic, G.

AU - Avcin, T.

AU - Cuttica, R.

AU - Burgos-Vargas, R.

AU - Faugier, E.

AU - Anton, J.

AU - Modesto, C.

AU - Vazquez, L.

AU - Barillas, L.

AU - Barinstein, L.

AU - Sterba, G.

AU - Maldonado, I.

AU - Ozen, S.

AU - Kasapcopur, O.

AU - Demirkaya, E.

AU - Benseler, S.

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. 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.

KW - Adolescent

KW - Antirheumatic Agents

KW - Child

KW - Feasibility Studies

KW - Female

KW - Humans

KW - Immunosuppressive Agents

KW - International Cooperation

KW - Language

KW - Male

KW - Preschool

KW - Psychometrics

KW - Quality of Life

KW - Research Design

KW - Rheumatic Diseases

KW - Surveys and Questionnaires

KW - Translating

KW - Treatment Outcome

KW - Adolescent

KW - Antirheumatic Agents

KW - Child

KW - Feasibility Studies

KW - Female

KW - Humans

KW - Immunosuppressive Agents

KW - International Cooperation

KW - Language

KW - Male

KW - Preschool

KW - Psychometrics

KW - Quality of Life

KW - Research Design

KW - Rheumatic Diseases

KW - Surveys and Questionnaires

KW - Translating

KW - Treatment Outcome

UR - https://publicatt.unicatt.it/handle/10807/191878

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UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=84924263216&origin=inward

U2 - 10.1186/1546-0096-12-49

DO - 10.1186/1546-0096-12-49

M3 - Article

SN - 1546-0096

VL - 12

SP - 1

EP - 10

JO - PEDIATRIC RHEUMATOLOGY ONLINE JOURNAL

JF - PEDIATRIC RHEUMATOLOGY ONLINE JOURNAL

IS - 1

ER -

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

Abstract

All Science Journal Classification (ASJC) codes

Keywords

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