Skip to main content
Top
Published in: Rheumatology International 1/2018

Open Access 01-04-2018 | Validation Studies

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

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)

Published in: Rheumatology International | Special Issue 1/2018

Login to get access

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.
go back to reference Strand CV, Russell AS (1997) WHO/ILAR taskforce on quality of life. J Rheumatol 24(8):1630–1633PubMed Strand CV, Russell AS (1997) WHO/ILAR taskforce on quality of life. J Rheumatol 24(8):1630–1633PubMed
2.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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
11.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Singh G, Athreya BH, Fries JF, Goldsmith DP (1994) Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 37:1761–1769CrossRefPubMed 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Landgraf JM, Abetz L, Ware JE (1996) The CHQ user’s manual, 1st edn. The Health Institute, New England Medical Center, Boston Landgraf JM, Abetz L, Ware JE (1996) The CHQ user’s manual, 1st edn. The Health Institute, New England Medical Center, Boston
17.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Nunnally JC (1978) Psychometric theory, 2nd edn. McGraw-Hill, New York Nunnally JC (1978) Psychometric theory, 2nd edn. McGraw-Hill, New York
20.
go back to reference Swinscow TDV (1997) Statistics at square one, Ninth edition, Revised by MJ Campbell. John Mark Ockerbloom, Southampton Swinscow TDV (1997) Statistics at square one, Ninth edition, Revised by MJ Campbell. John Mark Ockerbloom, Southampton
21.
go back to reference Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrika 16:297–334CrossRef Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrika 16:297–334CrossRef
22.
go back to reference 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 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.
go back to reference 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 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
Metadata
Title
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
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)
Publication date
01-04-2018
Publisher
Springer Berlin Heidelberg
Published in
Rheumatology International / Issue Special Issue 1/2018
Print ISSN: 0172-8172
Electronic ISSN: 1437-160X
DOI
https://doi.org/10.1007/s00296-018-3944-1

Other articles of this Special Issue 1/2018

Rheumatology International 1/2018 Go to the issue
Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

Watch this official video from ACC.24. Dr. Biykem Bozkurt discusses last year's major advances in heart failure and cardiomyopathies.