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 Danish language. The reading comprehension of the questionnaire was tested in ten JIA parents and patients. 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 three 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 303 JIA patients (7.9% systemic, 35% oligoarticular, 22.1% RF negative polyarthritis, 35% other categories) and 99 healthy children, were enrolled in three centres. The JAMAR components discriminated well healthy subjects from JIA patients. All JAMAR components revealed good psychometric performances. In conclusion, the Danish version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and clinical research.

Highlights

  • The Danish Juvenile Arthritis Multidimensional Assessment Report (JAMAR) was fully cross-culturally adapted from the standard English version with two forward and two backward translations with a concordance for 105/123 translation lines (85.4%) for the parent version and 107/120 lines (89.2%) for the child version

  • The text of the parent JAMAR was unmodified after the probe technique; even if not required by the methodology, the comments of the two children who did not understand line 107 of the child JAMAR were considered appropriate and the line was modified

  • The Danish version of the JAMAR was crossculturally adapted from the original standard English version with two forward and two backward translations

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Summary

Introduction

The JAMAR assesses the most relevant parent/ patient-reported outcomes in JIA, including overall wellbeing, functional status, health-related quality of life (HRQoL), pain, morning stiffness, disease activity/status/ course, articular and extra-articular involvement, drugrelated 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 epidemiology, outcome and treatment of childhood arthritis (EPOCA) in different geographic areas [3].

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