Development and validation of juvenile autoinflammatory disease multidimensional assessment report (JAIMAR) (original) (raw)
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Pediatric rheumatology online journal, 2013
This study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile idiopathic arthritis (JIA). The PRQL is a 10-item HRQoL measure with two subscales: physical health and psychological health. The original version of this measure was validated using an Italian-speaking cohort of 472 JIA patients and 796 healthy controls and found to have acceptable psychometric properties. The English language version has not been validated in a US pediatric population. The English PRQL was administered to 161 JIA subjects from a US Rheumatology clinic. We assessed the reliability (internal consistency and test-retest) and validity (convergent, discriminative, and criterion) of the PRQL. The English PRQL was feasible to administer and demonstrated good psychometric properties. Cronbach alpha (reliability) coefficients ranged from 0.72 to 0.81. Factor analysis yi...
The Turkish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatology international, 2018
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 Turkish 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, test-retest reliability, and construct validity (convergent and discr...
Paediatrica Indonesiana
Background Quality of life is an important outcome in the management of children with chronic conditions such as rheumatic diseases. The Pediatric Quality of Life Inventory Rheumatology Module (PedsQL-RM) questionnaire has been proven valid and reliable, but a validated Indonesian version of the questionnaire is not yet available. Objective To translate the PedsQL-RM into the Indonesian language, perform a transcultural adaptation, and assess its validity. Methods A cross-sectional study was performed in patients aged 2 to 18 years with systemic lupus erythematosus (SLE) or juvenile idiopathic arthritis (JIA) in Dr. Cipto Mangunkusumo Hospital, Jakarta. The initial phase of the study consisted of forward translation from the original English version into Indonesian, synthesis by experts, backward translation, and cognitive debriefing, resulting in the final version of the questionnaire. The second phase was testing the final questionnaire on patients in each age group and their pare...