Abstract

The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Canadian varieties of English and French. The reading comprehension of the questionnaires were tested in a probe sample of ten parents and ten JIA patients for Canadian English and other ten parents and ten JIA patients for Canadian French. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the 3 Likert assumptions, floor/ceiling effects, internal consistency, Cronbach’s alpha, interscale correlations, test–retest reliability and construct validity (convergent and discriminant validity). A total of 208 JIA patients (2.9% systemic, 41.8% oligoarticular, 27.9% RF negative polyarthritis, 27.4% other categories) and 152 healthy children, were enrolled at two paediatric rheumatology centres. The JAMAR components discriminated well healthy subjects from JIA patients. Notably, there was no significant difference between the healthy subjects and their affected peers in the psychosocial quality of life variable. All JAMAR components revealed good psychometric performances. In conclusion, the Canadian English and French versions of the JAMAR are valid tools for the assessment of children with JIA and are suitable for use both in routine clinical practice and clinical research.

Highlights

  • The aim of the present study was to cross-culturally adapt and validate the Canadian English and French parent, child/ adult version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) [1] in patients with juvenile idiopathic arthritis (JIA)

  • The Canadian English JAMAR was fully cross-culturally adapted from the original standard English version of the questionnaire with no forward and backward translation

  • The Canadian French JAMAR was fully cross-culturally adapted from the Swiss French version performed by the Paediatric Rheumatology International Trials Organisation (PRINTO) centre in Switzerland with no forward and backward translation

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Summary

Introduction

The aim of the present study was to cross-culturally adapt and validate the Canadian English and French parent, child/ adult version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) [1] in patients with juvenile idiopathic arthritis (JIA). The JAMAR assesses the most relevant parent/patient reported outcomes in JIA, including overall well-being, functional status, health related quality of life (HRQoL), pain, morning stiffness, disease activity/ status/course, articular and extra-articular involvement, drug-related side effects/compliance and satisfaction with illness outcome. This project was part of a larger multinational study conducted by the Paediatric Rheumatology International Trials Organisation (PRINTO) [2] aimed to evaluate the.

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