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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Robert Wood Johnson Medical School, Rutgers University, New Brunswick, NJ USA.
authors.forename: Lakshmi Nandini
authors.initials: LN
authors.lastname: Moorthy
authors.affiliation: Pediatric Rheumatology, Rutgers University Child Health Institute of New Jersey, 89 French Street, New Brunswick, NJ 08901 USA.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Roy
authors.affiliation: Pediatric Rheumatology, Rutgers University Child Health Institute of New Jersey, 89 French Street, New Brunswick, NJ 08901 USA.
authors.forename: Vamsi
authors.initials: V
authors.lastname: Kurra
authors.affiliation: Hospital for Special Surgery, New York, NY USA.
authors.forename: Margaret G E
authors.initials: MG
authors.lastname: Peterson
authors.affiliation: University of Michigan, Ann Arbor, MI USA.
authors.forename: Afton L
authors.initials: AL
authors.lastname: Hassett
authors.affiliation: Hospital for Special Surgery, New York, NY USA.
authors.forename: Thomas J A
authors.initials: TJ
authors.lastname: Lehman
authors.affiliation: Pediatric Rheumatology, Red Cross War Memorial Children's Hospital, Cape Town, South Africa.
authors.forename: Christiaan
authors.initials: C
authors.lastname: Scott
authors.affiliation: Pediatric Allergy, Immunology and Rheumatology Unit, Ain Shams University, Cairo, Egypt.
authors.forename: Dalia
authors.initials: D
authors.lastname: El-Ghoneimy
authors.affiliation: Pediatric Rheumatology, Pediatric Allergy, Immunology and Rheumatology Unit, Ain Shams University, Cairo, Egypt.
authors.forename: Shereen
authors.initials: S
authors.lastname: Saad
authors.affiliation: Pediatric Rheumatology, Pediatric Allergy, Immunology and Rheumatology Unit, Ain Shams University, Cairo, Egypt.
authors.forename: Reem
authors.initials: R
authors.lastname: El Feky
authors.affiliation: King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
authors.forename: Sulaiman
authors.initials: S
authors.lastname: Al-Mayouf
authors.affiliation: Charles University in Prague and General University Hospital, Prague, Czech Republic.
authors.forename: Pavla
authors.initials: P
authors.lastname: Dolezalova
authors.affiliation: Pediatric Department, University Hospital Motol, Prague, Czech Republic.
authors.forename: Hana
authors.initials: H
authors.lastname: Malcova
authors.affiliation: Pediatric Rheumatology, Aarhus University Hospital Skejby, Aarhus, Denmark.
authors.forename: Troels
authors.initials: T
authors.lastname: Herlin
authors.affiliation: Pediatric Rheumatology, Juliane Marie Centret Rigshospitalet, Copenhagen, Denmark.
authors.forename: Susan
authors.initials: S
authors.lastname: Nielsen
authors.affiliation: Department of Pediatric Immunology, University Medical Center, Utrecht, Netherlands.
authors.forename: Nico
authors.initials: N
authors.lastname: Wulffraat
authors.affiliation: Pediatric Rheumatology, Wilhelmina Children's Hospital, Utrecht, Netherlands.
authors.forename: Annet
authors.initials: A
authors.lastname: van Royen
authors.affiliation: Consultant Pediatric Nephrologist, Renal Unit, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
authors.forename: Stephen D
authors.initials: SD
authors.lastname: Marks
authors.affiliation: Pediatric Nephrology, Rheumatology and Dermatology Department, Hospices Civils de Lyon, Lyon University, Lyon, France.
authors.forename: Alexandre
authors.initials: A
authors.lastname: Belot
authors.affiliation: Medical University of Innsbruck, Innsbruck, Austria.
authors.forename: Jurgen
authors.initials: J
authors.lastname: Brunner
authors.affiliation: Pediatric Rheumatology, Prim. University Doz, Bregenz, Austria.
authors.forename: Christian
authors.initials: C
authors.lastname: Huemer
authors.affiliation: Head of the Hamburg Centre for Pediatric and Adolescence Rheumatology, Hamburg, Germany.
authors.forename: Ivan
authors.initials: I
authors.lastname: Foeldvari
authors.affiliation: Pediatric Rheumatology, Asklepios Clinic Sankt, Augustin, Germany.
authors.forename: Gerd
authors.initials: G
authors.lastname: Horneff
authors.affiliation: Pediatric Rheumatology, Zurich University Children's Hospital, Zürich, Switzerland.
authors.forename: Traudel
authors.initials: T
authors.lastname: Saurenman
authors.affiliation: Pediatric Rheumatology, Zurich University Children's Hospital, Zürich, Switzerland.
authors.forename: Silke
authors.initials: S
authors.lastname: Schroeder
authors.affiliation: Pediatrics/Pediatric Rheumatology, Pediatric Immunology and Rheumatology Referral Center, Aristotle University, Thessaloniki, Greece.
authors.forename: Polyxeni
authors.initials: P
authors.lastname: Pratsidou-Gertsi
authors.affiliation: Pediatrics/Pediatric Rheumatology, Pediatric Immunology and Rheumatology Referral Center, Aristotle University, Thessaloniki, Greece.
authors.forename: Maria
authors.initials: M
authors.lastname: Trachana
authors.affiliation: Kfar-Saba, Pediatric Rheumatology, Israel Meir Hospital, Kfar Saba, Israel.
authors.forename: Yosef
authors.initials: Y
authors.lastname: Uziel
authors.affiliation: Pediatric Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
authors.forename: Amita
authors.initials: A
authors.lastname: Aggarwal
authors.affiliation: Pediatric Rheumatology, Semmelweis University, Budapest, Hungary.
authors.forename: Tamas
authors.initials: T
authors.lastname: Constantin
authors.affiliation: Pediatric Rheumatology, Anna Meyer Hospital, Florence, Italy.
authors.forename: Rolando
authors.initials: R
authors.lastname: Cimaz
authors.affiliation: Pediatric Rheumatology, Anna Meyer Hospital, Florence, Italy.
authors.forename: Theresa
authors.initials: T
authors.lastname: Giani
authors.affiliation: Pediatric Rheumatology, Research Center of Systemic Autoimmune and Autoinflammatory Diseases, University of Siena, Siena, Italy.
authors.forename: Luca
authors.initials: L
authors.lastname: Cantarini
authors.affiliation: Pediatric Rheumatology, University of Florence, Florence, Italy.
authors.forename: Fernanda
authors.initials: F
authors.lastname: Falcini
authors.affiliation: Pediatric Rheumatology Unit IRCCS Ospedale Pediatrico Bambino Gesù, Rome, Italy.
authors.forename: Silvia Magni
authors.initials: SM
authors.lastname: Manzoni
authors.affiliation: Pediatric Rheumatology, University of Genoa Pediatria II-Reumatologia, Istituto G. Gaslini EULAR Centre of Excellence in Rheumatology, Genova, Italy.
authors.forename: Angelo
authors.initials: A
authors.lastname: Ravelli
authors.affiliation: Pediatric Rheumatology, Institute of Pediatrics Università Cattolica Sacro Cuore, Rome, Italy.
authors.forename: Donato
authors.initials: D
authors.lastname: Rigante
authors.affiliation: Pediatric Rheumatology Unit, Department of Pediatrics, University of Padua, Padua, Italy.
authors.forename: Fracnceso
authors.initials: F
authors.lastname: Zulian
authors.affiliation: Yokohama City University School of Medicine, Yokohama, Japan.
authors.forename: Takako
authors.initials: T
authors.lastname: Miyamae
authors.affiliation: Yokohama City University School of Medicine, Yokohama, Japan.
authors.forename: Shumpei
authors.initials: S
authors.lastname: Yokota
authors.affiliation: Pediatric Rheumatology, Universidade Estadual Paulista (UNESP), Botucatu, Brazil.
authors.forename: Juliana
authors.initials: J
authors.lastname: Sato
authors.affiliation: Pediatric Rheumatology, Universidade Estadual Paulista (UNESP), Botucatu, Brazil.
authors.forename: Claudia S
authors.initials: CS
authors.lastname: Magalhaes
authors.affiliation: Pediatric Rheumatology Unit, Department of Pediatrics, Universidade Federal de Sao Paulo, Sao Paulo, Brazil.
authors.forename: Claudio A
authors.initials: CA
authors.lastname: Len
authors.affiliation: Rheumatology unit, Department of Medicine, State University of Campinas, Campinas, Brazil.
authors.forename: Simone
authors.initials: S
authors.lastname: Appenzeller
authors.affiliation: Department of Pediatrics, Pediatric Rheumatology, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil.
authors.forename: Sheila Oliveira
authors.initials: SO
authors.lastname: Knupp
authors.affiliation: Department of Pediatrics, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil.
authors.forename: Marta Cristine
authors.initials: MC
authors.lastname: Rodrigues
authors.affiliation: Pediatric Rheumatology Division, Adolescent Health Care Unit, Universidade do Estado do, Rio de Janeiro, Brazil.
authors.forename: Flavio
authors.initials: F
authors.lastname: Sztajnbok
authors.affiliation: Pediatric Rheumatology Division, Adolescent Health Care Unit, Universidade do Estado do, Rio de Janeiro, Brazil.
authors.forename: Rozana Gasparello
authors.initials: RG
authors.lastname: de Almeida
authors.affiliation: Department of Pediatrics, Pediatric Rheumatology Unit, Children's Institute, Faculdade de Medicina da Universidade de Sao Paulo, Sao Paulo, Brazil.
authors.forename: Adriana Almeida
authors.initials: AA
authors.lastname: de Jesus
authors.affiliation: Department of Pediatrics, Pediatric Rheumatology Unit, Children's Institute, Faculdade de Medicina da Universidade de Sao Paulo, Sao Paulo, Brazil.
authors.forename: Lucia Maria
authors.initials: LM
authors.lastname: de Arruda Campos
authors.affiliation: Pediatric Rheumatology Unit, Children's Institute, Sao Paulo, Brazil.
authors.forename: Clovis
authors.initials: C
authors.lastname: Silva
authors.affiliation: Pediatric Rheumatology, Clinica Pediatrie I, Cluj-Napoca, Romania.
authors.forename: Calin
authors.initials: C
authors.lastname: Lazar
authors.affiliation: Pediatric Rheumatology, Institute of Rheumatology, Belgrade, Serbia.
authors.forename: Gordana
authors.initials: G
authors.lastname: Susic
authors.affiliation: Allergy, Rheumatology and Clinical Immunology University Children's Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia.
authors.forename: Tadej
authors.initials: T
authors.lastname: Avcin
authors.affiliation: Pediatric Rheumatology, Head Rheumatology Hospital Pedro de Elizalde, Buenos Aires, Argentina.
authors.forename: Ruben
authors.initials: R
authors.lastname: Cuttica
authors.affiliation: Pediatric Rheumatology, Hospital General de México, México City, México.
authors.forename: Ruben
authors.initials: R
authors.lastname: Burgos-Vargas
authors.affiliation: Hospital Infantil de México Federico Gómez, México City, Mexico.
authors.forename: Enrique
authors.initials: E
authors.lastname: Faugier
authors.affiliation: Pediatric Rheumatology, Hospital Sant Joan de Déu, Barcelona, Spain.
authors.forename: Jordi
authors.initials: J
authors.lastname: Anton
authors.affiliation: Pediatric Rheumatology, Hospital Universitario Valle de Hebron, Barcelona, Spain.
authors.forename: Consuelo
authors.initials: C
authors.lastname: Modesto
authors.affiliation: Pediatric Rheumatology, Calle Convento # 252, San Juan, PR USA.
authors.forename: Liza
authors.initials: L
authors.lastname: Vazquez
authors.affiliation: Pediatric Rheumatology, 47 New Scotland Ave Suite 197, Albany, NY USA.
authors.forename: Lilliana
authors.initials: L
authors.lastname: Barillas
authors.affiliation: Pediatric Rheumatology, Mt Sinai Medical Center, New York, NY USA.
authors.forename: Laura
authors.initials: L
authors.lastname: Barinstein
authors.affiliation: Rheumatology, Mount Sinai Medical Center, Miami Beach, FL USA.
authors.forename: Gary
authors.initials: G
authors.lastname: Sterba
authors.affiliation: Pediatric Rheumatology, Complejo Hospitalario Universitario Ruiz y Paez, Unidad de Reumatologia, Bolivar, Venezuela.
authors.forename: Irama
authors.initials: I
authors.lastname: Maldonado
authors.affiliation: Pediatric Rheumatology, Hacettepe University Department of Pediatrics, Ankara, Turkey.
authors.forename: Seza
authors.initials: S
authors.lastname: Ozen
authors.affiliation: Pediatric Rheumatology, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey.
authors.forename: Ozgur
authors.initials: O
authors.lastname: Kasapcopur
authors.affiliation: FMF Arthritis Vasculitis and Orphan disease Research Center, Institute of Health Sciences, Gata, Ankara Turkey.
authors.forename: Erkan
authors.initials: E
authors.lastname: Demirkaya
authors.affiliation: Department of Pediatrics, Alberta Children's Hospital Research Institute Faculty of Medicine, University of Calgary, Calgary, AB Canada.
authors.forename: Susa
authors.initials: S
authors.lastname: Benseler
mesh_terms: D000293:Adolescent; D018501:Antirheumatic Agents / Q000627:therapeutic use; D002648:Child; D002675:Child, Preschool; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D007166:Immunosuppressive Agents / Q000627:therapeutic use; D007391:International Cooperation; D007802:Language; D008297:Male; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D012107:Research Design; D012216:Rheumatic Diseases / Q000188:drug therapy / Q000523:psychology*; D011795:Surveys and Questionnaires; D014175:Translating; D016896:Treatment Outcome
chemical_list: D018501:Antirheumatic Agents; D007166:Immunosuppressive Agents