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 Paraguayan Spanish language. The reading comprehension of the questionnaire was tested in 10 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 3 Likert assumptions, floor/ceiling effects, internal consistency, Cronbach’s alpha, interscale correlations, and construct validity (convergent and discriminant validity). A total of 51 JIA patients (2% systemic, 27.4% oligoarticular, 37.2% RF negative polyarthritis, 33.4% other categories) and 100 healthy children, were enrolled. The JAMAR components discriminated well healthy subjects from JIA patients. Notably, there was no significant difference between healthy subjects and their affected peers in the school-related problem variable. All JAMAR components revealed good psychometric performances. In conclusion, the Paraguayan Spanish 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 aim of the present study was to cross-culturally adapt and validate the Paraguayan Spanish parent, child/adult version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) [1] in patients with juvenile idiopathic arthritis (JIA)

  • The Paraguayan Spanish JAMAR was fully cross-culturally adapted from the Mexican Spanish version

  • All the 120 lines of the patient version of the JAMAR were understood by at least 80% of the children. Both versions of the JAMAR were unmodified after the probe technique

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Summary

Introduction

The aim of the present study was to cross-culturally adapt and validate the Paraguayan Spanish parent, child/adult version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) [1] in patients with juvenile idiopathic arthritis (JIA). Rheumatology International (2018) 38 (Suppl 1):S307–S313 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, 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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