The Hungarian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatology International
The Hungarian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Ilonka Orbán 1 2 3 4 5
Tamás Constantin 1 2 3 4 5
Beáta Dérfalvi 1 2 3 4 5
Krisztina Sevcic 1 2 3 4 5
Diána Garan 1 2 3 4 5
Rita Káposzta 1 2 3 4 5
Gyula Poór 1 2 3 4 5
Emese Kiss 1 2 3 4 5
Andrea Ponyi 1 2 3 4 5
Alessandro Consolaro 1 2 3 4 5
Francesca Bovis 1 2 3 4 5
Nicolino Ruperto 1 2 3 4 5
0 Nicolino Ruperto https://
1 Krisztina Sevcic
2 Beáta Dérfalvi
3 Tamás Constantin
4 Clinica Pediatrica e Reumatologia, Paediatric Rheumatology International Trials Organisation (PRINTO), Istituto Giannina Gaslini , Via Gaslini 5, 16147 Genoa , Italy
5 Unit of Pediatric Rheumatology-Immunology, 2nd Department of Pediatrics, Semmelweis University , Budapest , Hungary
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 Hungarian 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 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 206 JIA patients (3.9% systemic, 41.3% oligoarticular, 28.2% RF-negative polyarthritis, 26.6% other categories) and 90 healthy children, were enrolled in two centres. The JAMAR components discriminated healthy subjects from JIA patients. All JAMAR components revealed good psychometric performances. In conclusion, the Hungarian 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. Extended author information available on the last page of the article Vol.:(011233456789)
Juvenile idiopathic arthritis; Disease status; Functional ability; Health-related quality of life; JAMAR
Introduction
The aim of the present study was to cross-culturally adapt
and validate the Hungarian parent, child/adult version of
the Juvenile Arthritis Multidimensional Assessment Report
(JAMAR) [
1
] in patients with juvenile idiopathic arthritis
The local members of the Paediatric Rheumatology International
Trials Organisation (PRINTO) participating in the project
are listed in the dedicated tables no. 2 and 3 of “https://doi.
org/10.1007/s00296-018-3944-1 / 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”.
(JIA). The JAMAR assesses the most relevant
parent/patientreported 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
Epidemiology, Outcome and Treatment of Childhood Arthritis
(EPOCA) in different geographic areas [
3
].
We report herein the results of the cross-cultural
adaptation and validation of the parent and patient versions of the
JAMAR in the Hungarian language.
Materials and methods
The methodology employed has been described in detail in
the introductory paper of the supplement [
4
]. In brief, it was
a cross-sectional study of JIA children, classified according
to the ILAR criteria [
5, 6
] and enrolled from December 2011
to April 2013. Children were recruited after Ethics
Committee approval and consent from at least one parent.
The JAMAR
The JAMAR [
1
] includes the following 15 sections:
1. Assessment of physical function (PF) using 15 items
in which the ability of the child to perform each task is
scored as follows: 0 = without difficulty, 1= with some
difficulty, 2= with much difficulty, and 3= unable to
do and not applicable if it was not possible to answer
the question or the patient was unable to perform the
task due to their young age or to reasons other than
JIA. The total PF score ranges from 0 to 45 and has
three components: PF-lower limbs (PF-LL); PF-hand
and wrist (PF-HW) and PF-upper segment (PF-US)
each scoring from 0 to 15 [
7
]. Higher scores indicating
higher degree (...truncated)