Satisfaction with current condition in juvenile idiopathic arthritis is linked to morning stiffness but not to burden of therapy

Introduction: Patient reported outcomes are increasingly being recognized as important instruments in the assessment of juvenile idiopathic arthritis (JIA) disease course. Analysis of these outcomes gives insight into factors that are important to patients and which should therefore have a bearing on the treatment decisions in the management of JIA. Objectives: To identify factors that are associated with patient reported satisfaction in JIA. Methods: A cross-sectional cohort of 239 anonymized JIA patients enrolled in PharmaChild in our centre and who completed at least one juvenile arthritis multidimensional assessment report (JAMAR) was evaluated. In case a patient completed more than 1 JAMAR, the first was analysed. Primary outcome was the patient’s satisfaction with their current condition. First, every item of the JAMAR, as well as JIA subtype, demographics and disease activity parameters was analysed in univariate analysis, using the primary outcome. Secondly, a multivariable logistic regression analysis was performed using all variables with a significant univariate relationship (defined by p <0.05). Results: The majority of patients was female (150, 62.8%). The median (interquartile range, IQR) age at JAMAR completion was 13 years (9.9, 15.9), the median (IQR) disease duration 5 years (2.3, 8.1) and 34.3% was affected by oligoarthritis according to ILAR criteria. The median (IQR) clinical juvenile arthritis disease activity score (cJADAS)-10 was 1.5 (0.0, 6.4). About one half of patients (126, 52.7%) judged themselves in remission and 191 (79.9%) were on therapy. Of 239 patients, 141 (59.0%) were satisfied with their current condition. Univariate analysis identified many variables with a significant association with the patient’s satisfaction: age at disease onset, disease duration, age at completion of the JAMAR; physician’s global assessment of disease activity (PGA), number of active and limited joint evaluated by the physician, JADAS-10, JADAS-71 and cJADAS-10; patient VAS pain, VAS disease activity and VAS well-being; patient self-assessment of joint involvement, presence of neck or back involvement according to the patient, presence and duration of morning stiffness, the current state and course of patient’s illness. Moreover, the sum of functional disabilities was associated with the patient’s satisfaction. Few patients expressed difficulties putting their hands behind their neck (13, 5.4%) or biting in a sandwich or apple (15, 6.3%) and these were not associated with satisfaction. The presence of problems at school caused by the illness and the sum of the items of quality of life were also associated with the patient’s satisfaction. Dissatisfied patients were more frequently on therapy (88.8% vs. 73.8%, p = 0.007), specifically NSAIDs (52.0% vs. 27.0%, p=0.004). Interestingly, being on methotrexate therapy was not associated with satisfaction (p = 0.416). Moreover, the presence of disturbances caused by medication showed only a borderline association (p = 0.052). Due to correlations among the variables, many could not be included in the logistic regression. The final model included the following predictors: age at completion of the JAMAR, age at disease onset, disease duration, morning stiffness, physician assessment of limited joints, being on therapy, NSAIDs therapy, presence of disturbances caused by medications, problems at school and patient VAS well-being. Only morning stiffness and VAS well-being resulted significant predictors in the model (p = 0.001 and p = 0.005, respectively). Conclusion: The results underline the influence of disease activity and the quality of life on the patient’s satisfaction. Contrariwise, therapy (especially methotrexate) and its side effects were not associated with the outcome. These findings support the idea to adapt the standard of care for JIA patients and aim at a rapid induction of disease remission and consequently an improvement of the quality of life, by early and aggressive treatment