1. Health Related Quality Of Life Measure In Systemic Pediatric Rheumatic Diseases And Its Translation To Different Languages: An International Collaboration
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Members of our collaborative group, Moorthy, Lakshmi Nandini, Roy, Elizabeth, Kurra, Vamsi, Peterson, Margaret GE, Hassett, Afton L, Lehman, Thomas JA, 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, Çocuk Sağlığı ve Hastalıkları, Rutgers State Univ, Hosp Special Surg, Univ Michigan, Red Cross War Mem Childrens Hosp, Ain Shams Univ, King Faisal Specialist Hosp & Res Ctr, Charles Univ Prague, Gen Univ Hosp, Univ Hosp Motol, Aarhus Univ, Rigshosp, Univ Med Ctr, Wilhelmina Childrens Hosp, Great Ormond St Hosp Sick Children, Lyon Univ, Med Univ Innsbruck, Prim Univ Doz, Hamburg Ctr Pediat & Adolescence Rheumatol, Asklepios Clin Sankt, Univ Zurich, Aristotle Univ Thessaloniki, Israel Meir Hosp, Sanjay Gandhi Postgrad Inst Med Sci, Semmelweis Univ, Anna Meyer Hosp, Univ Siena, Univ Florence, Osped Pediat Bambino Gesu, Univ Genoa Pediat II Reumatol, Univ Cattolica Sacro Cuore, Univ Padua, Yokohama City Univ, Universidade Estadual Paulista (Unesp), Universidade Federal de São Paulo (UNIFESP), Universidade Estadual de Campinas (UNICAMP), Universidade Federal do Rio de Janeiro (UFRJ), Univ Estado do, Universidade de São Paulo (USP), Childrens Inst, Clin Pediat I, Inst Rheumatol, Univ Childrens Hosp, Head Rheumatol Hosp Pedro Elizalde, Hosp Gen Mexico City, Hosp Infantil Mexico Fed Gomez, Hosp San Juan Dios, Hosp Univ Valle Hebron, Mt Sinai Med Ctr, Complejo Hosp Univ Ruiz & Paez, Hacettepe Univ, Istanbul Univ, FMF Arthrit Vasculitis & Orphan Dis Res Ctr, Univ Calgary, and Universitat de Barcelona
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Male ,Research design ,Pediatrics ,Settore MED/16 - REUMATOLOGIA ,Turkish ,International Cooperation ,German ,Quality of life ,immune system diseases ,Surveys and Questionnaires ,Immunology and Allergy ,Pediatric rheumatology ,Child ,skin and connective tissue diseases ,Language ,Inflamació ,humanities ,Treatment Outcome ,Qualitat de vida ,Research Design ,Child, Preschool ,Antirheumatic Agents ,language ,Female ,Immunosuppressive Agents ,geographic locations ,medicine.medical_specialty ,Adolescent ,Psychometrics ,Short Report ,Danish ,Rheumatology ,Feasibility Studies ,Humans ,Quality of Life ,Rheumatic Diseases ,Translating ,medicine ,Pediatrics, Perinatology, and Child Health ,Reumatologia pediàtrica ,Preschool ,Inflammation ,Lupus erythematosus ,business.industry ,medicine.disease ,language.human_language ,Family medicine ,Pediatrics, Perinatology and Child Health ,Xhosa ,Portuguese ,business - Abstract
Made available in DSpace on 2015-03-18T15:55:50Z (GMT). No. of bitstreams: 0 Previous issue date: 2014-11-25Bitstream added on 2015-03-18T16:28:34Z : No. of bitstreams: 1 WOS000346520700001.pdf: 205186 bytes, checksum: c29e39dcb1d87ab0b78ebf2affc7a14b (MD5) 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 (c)) to Simple Measure of Impact of Illness in Youngsters (SMILY (c)-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY (c)-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 (c)-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 (c)-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 (c)-Illness with its available translations may be used as useful adjuncts to clinical practice and research. Rutgers State Univ, Robert Wood Johnson Med Sch, New Brunswick, NJ 08903 USA Rutgers State Univ, Child Hlth Inst New Jersey, New Brunswick, NJ 08901 USA Hosp Special Surg, New York, NY 10021 USA Univ Michigan, Ann Arbor, MI 48109 USA Red Cross War Mem Childrens Hosp, Cape Town, South Africa Ain Shams Univ, Pediat Allergy Immunol & Rheumatol Unit, Cairo, Egypt Ain Shams Univ, Pediat Rheumatol Pediat Allergy Immunol & Rheum, Cairo, Egypt King Faisal Specialist Hosp & Res Ctr, Riyadh 11211, Saudi Arabia Charles Univ Prague, Prague, Czech Republic Gen Univ Hosp, Prague, Czech Republic Univ Hosp Motol, Dept Pediat, Prague, Czech Republic Aarhus Univ, Hosp Skejby, Aarhus, Denmark Rigshosp, Juliane Marie Ctr, DK-2100 Copenhagen, Denmark Univ Med Ctr, Dept Pediat Immunol, Utrecht, Netherlands Wilhelmina Childrens Hosp, Utrecht, Netherlands Great Ormond St Hosp Sick Children, Children NHS Fdn Trust, Renal Unit, London, England Lyon Univ, Hosp Civils Lyon, Rheumatol & Dermatol Dept, Lyon, France Med Univ Innsbruck, A-6020 Innsbruck, Austria Prim Univ Doz, Bregenz, Austria Hamburg Ctr Pediat & Adolescence Rheumatol, Hamburg, Germany Asklepios Clin Sankt, Augustin, Germany Univ Zurich, Childrens Hosp, Zurich, Switzerland Aristotle Univ Thessaloniki, Pediat Immunol & Rheumatol Referral Ctr, GR-54006 Thessaloniki, Greece Israel Meir Hosp, Kefar Sava, Israel Sanjay Gandhi Postgrad Inst Med Sci, Lucknow, Uttar Pradesh, India Semmelweis Univ, H-1085 Budapest, Hungary Anna Meyer Hosp, Florence, Italy Univ Siena, Res Ctr System Autoimmune & Autoinflammatory Dis, I-53100 Siena, Italy Univ Florence, Florence, Italy Osped Pediat Bambino Gesu, IRCCS, Pediat Rheumatol Unit, Rome, Italy Univ Genoa Pediat II Reumatol, Ist G Gaslini EULAR, Ctr Excellence Rheumatol, Genoa, Italy Univ Cattolica Sacro Cuore, Inst Pediat, Rome, Italy Univ Padua, Dept Pediat, Pediat Rheumatol Unit, Padua, Italy Yokohama City Univ, Sch Med, Yokohama, Kanagawa 232, Japan Univ Estadual Paulista, UNESP, Botucatu, SP, Brazil Univ Fed Sao Paulo, Dept Pediat, Sao Paulo, Brazil Univ Estadual Campinas, Dept Med, Campinas, SP, Brazil Univ Fed Rio de Janeiro, Dept Pediat, Rio De Janeiro, Brazil Univ Estado do, Adolescent Hlth Care Unit, Div Pediat Rheumatol, Rio De Janeiro, Brazil Univ Sao Paulo, Fac Med, Childrens Inst, Dept Pediat,Pediat Rheumatol Unit, Sao Paulo, Brazil Childrens Inst, Pediat Rheumatol Unit, Sao Paulo, Brazil Clin Pediat I, Cluj Napoca, Romania Inst Rheumatol, Belgrade, Serbia Univ Childrens Hosp, Univ Med Ctr Ljubljana, Ljubljana, Slovenia Head Rheumatol Hosp Pedro Elizalde, Buenos Aires, DF, Argentina Hosp Gen Mexico City, Mexico City, DF, Mexico Hosp Infantil Mexico Fed Gomez, Mexico City, DF, Mexico Hosp San Juan Dios, Barcelona, Spain Hosp Univ Valle Hebron, Barcelona, Spain Mt Sinai Med Ctr, New York, NY 10029 USA Mt Sinai Med Ctr, Miami Beach, FL 33140 USA Complejo Hosp Univ Ruiz & Paez, Bolivar, Venezuela Hacettepe Univ, Dept Pediat, Ankara, Turkey Istanbul Univ, Cerrahpasa Med Sch, Istanbul, Turkey FMF Arthrit Vasculitis & Orphan Dis Res Ctr, Inst Hlth Sci, Ankara, Turkey Univ Calgary, Dept Pediat, Alberta Childrens Hosp, Res Inst, Calgary, AB T2N 1N4, Canada Univ Estadual Paulista, UNESP, Botucatu, SP, Brazil
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- 2014