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

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 Brazilian Portuguese 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 231 JIA patients (14.7% systemic, 43.3% oligoarticular, 22.5% RF negative polyarthritis, 19.5% other categories) and 72 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 Brazilian Portuguese 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.

Quality of life in children and adults with Idiopathic juvenile arthritis: cross-sectional study in Brazilian patients

“…Epidemiological and clinical data were obtained through chart reviews. All patients were submitted to Juvenile Arthritis Multidimensional Assessment Report (JAMAR) 8 . The Childhood Health Assessment Questionnaire (CHAQ) was applied to children 9 and adults answered the Health Assessment Questionnaire (HAQ) 10 .…”

“…The Childhood Health Assessment Questionnaire (CHAQ) was applied to children 9 and adults answered the Health Assessment Questionnaire (HAQ) 10 . All applied instruments were translated and validated to Portuguese language [8][9][10] . JAMAR 8 is a questionnaire that allows multidimensional evaluation of JIA.…”

“…All applied instruments were translated and validated to Portuguese language [8][9][10] . JAMAR 8 is a questionnaire that allows multidimensional evaluation of JIA. It's auto applicable in individuals over 7 years of age and has 15 domains that evaluate the following: functional status measured through the Juvenile Arthritis Functionality Scale (JAFS), which has several questions on daily life activities and is graded from 0 (no difficulties) to 45 (disability); pain intensity-using a visual analog scale (VAS) whose score ranges from 0 (no pain) to 10 (worst scenario); patients' perception of arti-cular pain and edema; degree of morning stiffness; extra articular symptoms; patients' perception of disease activity graduated from 0 (no activity) to 10 (maximum activity); evaluation of disease course at the moment of interview: remission, persistent activity or relapse; classification of the disease status in relation to previous consultation (from much better to much worse); drug treatment; treatment side effects; treatment adhesion; degree of difficulties in work/school caused by the disease; evaluation of QoL through the Pediatric Rheumatology Quality of Life Scale (PRQL), which is a 10-item measurement of QoL that uses a 4-point Likert scale ranging from 0 (never) to 3 (all the time) and a total score from 0 to 30, with higher scores indicating worse quality of life; evaluation of general well-being through the VAS (from 0 =very well to 10=very bad); a question on the degree of satisfaction with the present status of the disease (with yes or no response).…”