8 research outputs found
The Greek version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
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 Greek language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographics, clinical data, and the JAMAR from 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\u2019s alpha, interscale correlations, test\u2013retest reliability, and construct validity (convergent and discriminant validity). The Greek JAMAR was fully cross-culturally adapted with two forward and three backward translations. A total of 272 JIA patients (5.9% systemic, 57.7% oligoarticular, 21.3% RF negative poly-arthritis, 15.1% other categories), and 100 healthy children were enrolled in all centres. The JAMAR components discriminated well-healthy subjects from JIA patients; notably, there was no significant difference between healthy subjects and their affected peers in psychosocial quality of life and school-related items. All JAMAR components revealed good psychometric performances. In conclusion, the Greek 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 in clinical research
Prevalence and clinical significance of serological markers in the investigation of coeliac disease in patients with down syndrome
The Greek version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
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
Greek language. The reading comprehension of the questionnaire was
tested in 10 JIA parents and patients. Each participating centre was
asked to collect demographics, clinical data, and the JAMAR from 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). The Greek JAMAR was
fully cross-culturally adapted with two forward and three backward
translations. A total of 272 JIA patients (5.9% systemic, 57.7%
oligoarticular, 21.3% RF negative poly-arthritis, 15.1% other
categories), and 100 healthy children were enrolled in all centres. The
JAMAR components discriminated well-healthy subjects from JIA patients;
notably, there was no significant difference between healthy subjects
and their affected peers in psychosocial quality of life and
school-related items. All JAMAR components revealed good psychometric
performances. In conclusion, the Greek 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 in clinical research
Proxy-reported health-related quality of life of patients with juvenile idiopathic arthritis: the Pediatric Rheumatology International Trials Organization multinational quality of life cohort study
To investigate the proxy-reported health-related quality of life (HRQOL) and its determinants in patients with juvenile idiopathic arthritis (JIA)
Methotrexate withdrawal at 6 vs 12 months in juvenile idiopathic arthritis in remission:a randomized clinical trial
Context Novel therapies have improved the remission rate in chronic inflammatory disorders including juvenile idiopathic arthritis (JIA). Therefore, strategies of tapering therapy and reliable parameters for detecting subclinical inflammation have now become challenging questions.Objectives To analyze whether longer methotrexate treatment during remission of JIA prevents flares after withdrawal of medication and whether specific biomarkers identify patients at risk for flares.Design, Setting, and Patients Prospective, open, multicenter, medication-withdrawal randomized clinical trial including 364 patients (median age, 11.0 years) with JIA recruited in 61 centers from 29 countries between February 2005 and June 2006. Patients were included at first confirmation of clinical remission while continuing medication. At the time of therapy withdrawal, levels of the phagocyte activation marker myeloid-related proteins 8 and 14 heterocomplex (MRP8/14) were determined.Intervention Patients were randomly assigned to continue with methotrexate therapy for either 6 months (group 1 [n = 183]) or 12 months (group 2 [n = 181]) after induction of disease remission.Main Outcome Measures Primary outcome was relapse rate in the 2 treatment groups; secondary outcome was time to relapse. In a prespecified cohort analysis, the prognostic accuracy of MRP8/14 concentrations for the risk of flares was assessed.Results Intention-to-treat analysis of the primary outcome revealed relapse within 24 months after the inclusion into the study in 98 of 183 patients (relapse rate, 56.7%) in group 1 and 94 of 181 (55.6%) in group 2. The odds ratio for group 1 vs group 2 was 1.02 (95% CI, 0.82-1.27; P=.86). The median relapse-free interval after inclusion was 21.0 months in group 1 and 23.0 months in group 2. The hazard ratio for group 1 vs group 2 was 1.07 (95% CI, 0.82-1.41; P=.61). Median follow-up duration after inclusion was 34.2 and 34.3 months in groups 1 and 2, respectively. Levels of MRP8/14 during remission were significantly higher in patients who subsequently developed flares (median, 715 [IQR, 320-1110] ng/mL) compared with patients maintaining stable remission (400 [IQR, 220-800] ng/mL; P=.003). Low MRP8/14 levels indicated a low risk of flares within the next 3 months following the biomarker test (area under the receiver operating characteristic curve, 0.76; 95% CI, 0.62-0.90).Conclusions In patients with JIA in remission, a 12-month vs 6-month withdrawal of methotrexate did not reduce the relapse rate. Higher MRP8/14 concentrations were associated with risk of relapse after discontinuing methotrexate.</p