1. Cross-cultural adaptation and psychometric evaluation of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) in 54 languages across 52 countries: review of the general methodology
- Author
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Nicolino Ruperto, Luca Villa, Silvia Scala, Alessandro Consolaro, Francesca Bovis, Angela Pistorio, Alberto Martini, Mariangela Rinaldi, Elisa Patrone, Angelo Ravelli, and Marco Garrone
- Subjects
Czech ,Male ,Parents ,Health Status ,International Cooperation ,Arthritis ,Review ,Validation Studies as Topic ,Disability Evaluation ,0302 clinical medicine ,Epidemiology ,Multicenter Studies as Topic ,Healthy children ,Immunology and Allergy ,030212 general & internal medicine ,Age of Onset ,Cooperative Behavior ,Socioeconomics ,Child ,Juvenile Arthritis Multidimensional Assessment Report (JAMAR) ,Oligoarthritis ,Prognosis ,Research Design ,Child, Preschool ,language ,Polyarthritis ,Female ,geographic locations ,medicine.medical_specialty ,Adolescent ,Patients ,Psychometrics ,Immunology ,Juvenile idiopathic arthritis (JIA) ,03 medical and health sciences ,Psoriatic arthritis ,Rheumatology ,Predictive Value of Tests ,medicine ,Cross-cultural ,Juvenile ,Humans ,Patient Reported Outcome Measures ,Validation Studies ,Cross-cultural adaptation and psychometric evaluation methodology ,030203 arthritis & rheumatology ,Cultural Characteristics ,business.industry ,Reproducibility of Results ,Translating ,medicine.disease ,language.human_language ,Arthritis, Juvenile ,Case-Control Studies ,Quality of Life ,business - Abstract
The aim of this project was to cross-culturally adapt and validate the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) questionnaire in 54 languages across 52 different countries that are members of the Paediatric Rheumatology International Trials Organisation (PRINTO). This effort was part of a wider project named Epidemiology and Outcome of Children with Arthritis (EPOCA) to obtain information on the frequency of juvenile idiopathic arthritis (JIA) categories in different geographic areas, the therapeutic approaches adopted, and the disease status of children with JIA currently followed worldwide. A total of 13,843 subjects were enrolled from the 49 countries that took part both in the cross-cultural adaptation phase and in the related validation and data collection: Algeria, Argentina, Belgium, Brazil, Bulgaria, Canada, Chile, Colombia, Croatia, Czech Republic, Denmark, Ecuador, Egypt, Estonia, Finland, France, Georgia, Germany, Greece, Hungary, India, Islamic Republic of Iran, Israel, Italy, Latvia, Libya, Lithuania, Mexico, Netherlands, Norway, Oman, Paraguay, Poland, Portugal, Romania, Russian Federation, Saudi Arabia, Serbia, Slovakia, Slovenia, South Africa, Spain, Sweden, Switzerland, Thailand, Turkey, Ukraine, United Kingdom and United States of America. 9021 patients had JIA (10.7% systemic arthritis, 41.9% oligoarthritis, 23.5% RF negative polyarthritis, 4.2% RF positive polyarthritis, 3.4% psoriatic arthritis, 10.6% enthesitis-related arthritis and 5.7% undifferentiated arthritis) while 4822 were healthy children. This introductory paper describes the overall methodology; results pertaining to each country are fully described in the accompanying manuscripts. In conclusion, the JAMAR translations were found to have satisfactory psychometric properties and it is thus a reliable and valid tool for the multidimensional assessment of children with JIA.
- Published
- 2018