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07-04-2018 | Juvenile idiopathic arthritis | Article

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

Journal: Rheumatology International

Authors: Francesca Bovis, Alessandro Consolaro, Angela Pistorio, Marco Garrone, Silvia Scala, Elisa Patrone, Mariangela Rinaldi, Luca Villa, Alberto Martini, Angelo Ravelli, Nicolino Ruperto, For the Paediatric Rheumatology International Trials Organisation (PRINTO)

Publisher: Springer Berlin Heidelberg

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.
Literature
1.
Strand CV, Russell AS (1997) WHO/ILAR taskforce on quality of life. J Rheumatol 24(8):1630–1633PubMed
2.
Filocamo G, Consolaro A, Schiappapietra B, Dalpra S, Lattanzi B, Magni-Manzoni S et al (2011) A new approach to clinical care of juvenile idiopathic arthritis: the Juvenile Arthritis Multidimensional Assessment Report. J Rheumatol 38(5):938–953CrossRefPubMed
3.
Filocamo G, Sztajnbok F, Cespedes-Cruz A, Magni-Manzoni S, Pistorio A, Viola S et al (2007) Development and validation of a new short and simple measure of physical function for juvenile idiopathic arthritis. Arthritis Rheum 57(6):913–920CrossRefPubMed
4.
Filocamo G, Davi S, Pistorio A, Bertamino M, Ruperto N, Lattanzi B et al (2010) Evaluation of 21-numbered circle and 10-centimeter horizontal line visual analog scales for physician and parent subjective ratings in juvenile idiopathic arthritis. J Rheumatol 37(7):1534–1541CrossRefPubMed
5.
Filocamo G, Schiappapietra B, Bertamino M, Pistorio A, Ruperto N, Magni-Manzoni S et al (2010) A new short and simple health-related quality of life measurement for paediatric rheumatic diseases: initial validation in juvenile idiopathic arthritis. Rheumatology 49(7):1272–1280CrossRefPubMed
6.
Ruperto N, Martini A, For the Paediatric Rheumatology International Trials Organisation (PRINTO) (2011) Networking in pediatrics: the example of the Pediatric Rheumatology International Trials Organisation (PRINTO). Arch Dis Child 96:596–601CrossRefPubMed
7.
Ruperto N, Ravelli A, Pistorio A, Malattia C, Cavuto S, Gado-West L et al (2001) Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clin Exp Rheumatol 19(4):S1–S9PubMed
8.
Consolaro A, Ruperto N, Filocamo G, Lanni S, Bracciolini G, Garrone M et al (2012) Seeking insights into the EPidemiology, treatment and Outcome of Childhood Arthritis through a multinational collaborative effort: introduction of the EPOCA study. Pediatr Rheumatol Online J 10(1):39CrossRefPubMedPubMedCentral
9.
Petty RE, Southwood TR, Manners P, Baum J, Glass DN, Goldenberg J et al (2004) International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001. J Rheumatol 31(2):390–392PubMed
10.
Food and Drug Administration (FDA) (2009) Guidance for industry. Patient-reported outcome measures: use in medical product development to support labeling claims. https://​www.​fda.​gov/​downloads/​drugs/​guidances/​ucm193282.​pdf (1–39). Accessed 16 Feb 2018
11.
Lovell DJ, Howe S, Shear E, Hartner S, McGirr G, Schulte M et al (1989) Development of a disability measurement tool for juvenile rheumatoid arthritis. The juvenile arthritis functional assessment scale. Arthritis Rheum 32:1390–1395CrossRefPubMed
12.
Howe S, Levinson J, Shear E, Hartner S, McGirr G, Schulte M et al (1991) Development of a disability measurement tool for juvenile rheumatoid arthritis. The juvenile arthritis functional assessment report for children and their parents. Arthritis Rheum 34:873–880CrossRefPubMed
13.
Singh G, Athreya BH, Fries JF, Goldsmith DP (1994) Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 37:1761–1769CrossRefPubMed
14.
Duffy CM, Arsenault L, Duffy KN, Paquin JD, Strawczynski H (1997) The Juvenile Arthritis Quality of Life Questionnaire—development of a new responsive index for juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol 24(4):738–746PubMed
15.
Varni JW, Seid M, Knight TS, Burwinkle T, Brown J, Szer IS (2002) The PedsQL(TM) in pediatric rheumatology—Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory(TM) generic core scales and rheumatology module. Arthritis Rheum 46(3):714–725CrossRefPubMed
16.
Landgraf JM, Abetz L, Ware JE (1996) The CHQ user’s manual, 1st edn. The Health Institute, New England Medical Center, Boston
17.
Filocamo G, Consolaro A, Schiappapietra B, Ruperto N, Pistorio A, Solari N et al (2012) Parent and child acceptable symptom state in juvenile idiopathic arthritis. J Rheumatol 39(4):856–863CrossRefPubMed
18.
Guillemin F, Bombardier C, Beaton D (1993) Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 46:1417–1432CrossRefPubMed
19.
Nunnally JC (1978) Psychometric theory, 2nd edn. McGraw-Hill, New York
20.
Swinscow TDV (1997) Statistics at square one, Ninth edition, Revised by MJ Campbell. John Mark Ockerbloom, Southampton
21.
Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrika 16:297–334CrossRef
22.
Ware JE Jr, Harris WJ, Gandek B, Rogers BW, Reese PR (1997) MAP-R for windows: multitrait/multi-item analysis program—revised user’s guide. Version 1.0 ed. Health Assessment Lab, Boston
23.
Giannini EH, Ruperto N, Ravelli A, Lovell DJ, Felson DT, Martini A (1997) Preliminary definition of improvement in juvenile arthritis. Arthritis Rheum 40(7):1202–1209CrossRefPubMed