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      The Romanian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)

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          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 Romanian language. The reading comprehension of the questionnaire was tested in 15 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 310 JIA patients (11.9% systemic, 21.6% oligoarticular, 31.9% RF-negative polyarthritis, 34.6% other categories) and 100 healthy children, were enrolled in six centres. The JAMAR components discriminated well healthy subjects from JIA patients except for the health-related quality of life psychosocial health subscales. All JAMAR components revealed good psychometric performances. In conclusion, the Romanian 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.

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          Measurement of health status in children with juvenile rheumatoid arthritis.

          To develop and validate a self- or parent-administered instrument for measuring functional status in children with juvenile rheumatoid arthritis (JRA). We adapted the Stanford Health Assessment Questionnaire (HAQ) for use in children ages 1-19 years, by adding several new questions, such that for each functional area, there was at least 1 question relevant to children of all ages. The face validity of the instrument was evaluated by a group of 20 health professionals and parents of 22 healthy children. The questionnaire was then administered to parents of 72 JRA patients (mean age 9.1 years, onset type systemic in 16, polyarticular in 21, pauciarticular in 35). The instrument showed excellent internal reliability (Cronbach's alpha = 0.94), with a mean inter-item correlation of 0.6. The convergent validity was demonstrated by strong correlations of the Disability Index (average of scores on all functional areas) with Steinbrocker functional class (Kendall's tau b = 0.77, P 8 years) was 0.84 (n = 29; P 0.9 by paired t-test; Spearman's correlation coefficient = 0.8, P < 0.002). The Childhood HAQ, which takes less than 10 minutes to complete, is a valid, reliable, and sensitive instrument for measuring functional status in children with JRA.
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            Revision of the proposed classification criteria for juvenile idiopathic arthritis: Durban, 1997.

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              A new approach to clinical care of juvenile idiopathic arthritis: the Juvenile Arthritis Multidimensional Assessment Report.

              To develop and test a new multidimensional questionnaire for assessment of children with juvenile idiopathic arthritis (JIA) in standard clinical care. The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) includes 15 parent or patient-centered measures or items that assess well-being, pain, functional status, health-related quality of life, morning stiffness, disease activity, disease status and course, joint disease, extraarticular symptoms, side effects of medications, therapeutic compliance, and satisfaction with illness outcome. The JAMAR is proposed for use as both a proxy-report and a patient self-report, with the suggested age range of 7-18 years for use as a self-report. From March 2007 to September 2009, the questionnaire was completed by the parents of 618 children with JIA in 1814 visits and by 332 children in 749 visits. The JAMAR was found to be feasible and to possess face and content validity. All parents and children reported that the questionnaire was simple and easy to understand. Completion and scoring appeared to be quick, requiring < 15 minutes. There were very few missing data. Parents' proxy-reported and children's self-reported data were remarkably concordant. The JAMAR provided thorough information for the study patients about recent medical history and current health status. It performed similarly across different children's ages and characterized the level of disease activity and disability well. The development of the JAMAR introduces a new approach in pediatric rheumatology practice. This new questionnaire may help enhance the quality of care of children with JIA.
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                Author and article information

                Contributors
                calinlazar2004@yahoo.com
                nicolae.iagaru@gmail.com
                laserail_mail@yahoo.com
                lauraailioaie@yahoo.com
                ladaym@gmail.com
                aposadri@yahoo.com
                mihaelaspirchez@gmail.com
                doinaioanabadiu@yahoo.com
                alessandroconsolaro@gaslini.org
                francescabovis@gaslini.org
                nicolaruperto@gaslini.org , http://www.printo.it
                Journal
                Rheumatol Int
                Rheumatol. Int
                Rheumatology International
                Springer Berlin Heidelberg (Berlin/Heidelberg )
                0172-8172
                1437-160X
                7 April 2018
                7 April 2018
                2018
                : 38
                : Suppl 1
                : 331-338
                Affiliations
                [1 ]ISNI 0000 0004 0568 4077, GRID grid.477903.e, Spitalul Clinic de Urgență pentru Copii, ; Str. Motilor Nr. 68, 400370 Cluj-Napoca, Romania
                [2 ]ISNI 0000 0004 0571 5814, GRID grid.411040.0, Universitatea de Medicină și Farmacie Iuliu Hațieganu Cluj Napoca, ; Cluj Napoca, Romania
                [3 ]ISNI 000000044690 6975, GRID grid.488698.3, Institutul de Ocrotire a Mamei și Copilului, ; Bucharest, Romania
                [4 ]Spitalul Clinic de Urgență pentru Copii “Sf. Maria”, Iasi, Romania
                [5 ]ISNI 0000000419371784, GRID grid.8168.7, Alexandru Ioan Cuza University of Iasi, ; Iasi, Romania
                [6 ]Spitalul Clinic Județean De Urgenta, Tirgu-Mures, Romania
                [7 ]Spitalul Clinic Județean de Urgență, Constanța, Romania
                [8 ]ISNI 0000 0004 1760 0109, GRID grid.419504.d, Clinica Pediatrica e Reumatologia, Paediatric Rheumatology International Trials Organisation (PRINTO), , Istituto Giannina Gaslini, ; Via Gaslini 5, 16147 Genoa, Italy
                [9 ]ISNI 0000 0001 2151 3065, GRID grid.5606.5, Dipartimento di Pediatria, , Università di Genova, ; Genoa, Italy
                Article
                3968
                10.1007/s00296-018-3968-6
                5893676
                29637333
                3c1b29f8-5ce1-4597-a077-e82457851d16
                © The Author(s) 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 22 December 2017
                : 11 January 2018
                Categories
                Validation Studies
                Custom metadata
                © Springer-Verlag GmbH Germany, part of Springer Nature 2018

                Rheumatology
                juvenile idiopathic arthritis,disease status,functional ability,health-related quality of life,jamar

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