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 Norwegian language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographic and 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 discriminant validity). A total of 301 JIA patients (3.3% systemic, 41.2% oligoarticular, 25.9% RF negative polyarthritis, and 29.6% other categories) and 74 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 Norwegian 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.
Subject(s)
Arthritis, Juvenile/diagnosis , Disability Evaluation , Patient Reported Outcome Measures , Rheumatology/methods , Adolescent , Age of Onset , Arthritis, Juvenile/physiopathology , Arthritis, Juvenile/psychology , Arthritis, Juvenile/therapy , Case-Control Studies , Child , Child, Preschool , Cultural Characteristics , Female , Health Status , Humans , Male , Norway , Parents/psychology , Patients/psychology , Predictive Value of Tests , Prognosis , Psychometrics , Quality of Life , Reproducibility of Results , TranslatingABSTRACT
OBJECTIVE: To investigate the sustained effect of a rehabilitation programme for patients with ankylosing spondylitis, and to compare the effect of this intervention given in a Mediterranean vs a Norwegian setting. METHODS: A total of 107 patients with ankylosing spondylitis applying for rehabilitation were randomized to a 4-week inpatient rehabilitation programme in a Mediterranean country or in Norway. The participants were evaluated clinically before and after the rehabilitation period (week 0 and 4) and in week 16. The ASsessments in Ankylosing Spondylitis working group's Improvement Criteria (ASAS-IC), and tests of spinal mobility and physical capacity were used to measure treatment response. RESULTS: An ASAS20 improvement was still present at week 16 in 50% of the patients treated in a Mediterranean and 23% in a Norwegian centre (p = 0.006). The tests of spinal mobility, physical capacity, and almost all patient's assessments of health status (ASAS-IC components) were still improved at week 16 after therapy in both climatic settings. While the improvements in physical capacity were comparable, the spinal mobility and ASAS-IC components improved more, and improvements were sustained longer, after rehabilitation in a Mediterranean setting. CONCLUSION: Patients with ankylosing spondylitis benefit from a 4-week rehabilitation programme in Norway, but even more so from a similar programme in a Mediterranean setting.
Subject(s)
Spondylitis, Ankylosing/rehabilitation , Adult , Aged , Climate , Climatotherapy , Female , Humans , Male , Middle Aged , Montenegro , Norway , Outcome Assessment, Health Care , Physical Therapy Modalities , Program Evaluation , Time Factors , Treatment Outcome , TurkeyABSTRACT
OBJECTIVE: To compare muscle strength, physical health, and HLA-DRB1 allele carriage frequencies in patients with longstanding juvenile dermatomyositis (DM) with that of controls, and to determine the presence of and risk factors for muscle weakness and magnetic resonance imaging (MRI)-detected muscle damage in juvenile DM patients. METHODS: Fifty-nine patients with juvenile DM examined a median of 16.8 years (range 2.0-38.1 years) after disease onset were compared with 59 age- and sex-matched controls. Muscle strength/endurance was measured by manual muscle testing (MMT) and the Childhood Myositis Assessment Scale (CMAS); health status was measured by the Short Form 36. HLA-DRB1 alleles were determined by sequencing in patients and 898 healthy controls. In patients, disease activity/damage was measured by the Disease Activity Score (DAS), Myositis Damage Index (MDI), Health Assessment Questionnaire/Childhood Health Assessment Questionnaire, and MRI scans of the thigh muscles. Early disease characteristics were obtained by chart review. RESULTS: Patients had lower muscle strength/endurance (P < 0.001 for both) and physical health (P = 0.014) and increased HLA-DRB1*0301 (P = 0.01) and DRB1*1401 (P = 0.003) compared with controls. In patients, persistent muscle weakness was found in 42% with MMT (score <78) and in 31% with the CMAS (score <48), whereas MRI-detected muscle damage was found in 52%. Muscle weakness and MRI-detected muscle damage were predicted by MDI muscle damage and a high DAS 1 year postdiagnosis. CONCLUSION: A median of 16.8 years after disease onset, juvenile DM patients were weaker than the controls; muscle weakness/reduced endurance was found in 31-42% of patients and MRI-detected muscular damage was found in 52% of patients. The outcomes were predicted by high disease activity and muscle damage present 1 year postdiagnosis.
