Patient-reported outcomes and medication satisfaction in adults with juvenile idiopathic arthritis

Juvenile idiopathic arthritis (JIA) is a chronic rheumatic disease. The severity and disease course are highly variable and JIA can be a life-long disorder. The aims of this study were to assess patient-reported outcomes in adults with JIA regarding pain, physical disability and health-related quality of life (HRQOL), examine longitudinal changes and predictors of these outcomes, and explore treatment satisfaction with and adherence to medication in patients currently treated with disease-modifying antirheumatic drugs (DMARDs). Two cohorts of patients were included in the study. 96 patients (previously assessed each 6 months for 3 years at early disease course) were reassessed 19 years after disease onset and 176 patients (previously assessed after 15 and 23 years of disease duration) were reassessed after 30 years. Controls were recruited from the general population. In both cohorts, patients had lower physical HRQOL than controls and almost half of patients reported some physical disability. After 19 years patients also had more pain than controls. Patients` levels of wellbeing and physical HRQOL deteriorated during the longitudinal follow-ups after 15, 23 and 30 years, while fatigue and proportion with physical disability increased from 3 to 19-year follow-up. Patients on DMARDs (n=52) 19 years after disease onsets were more satisfied with biological drugs than with methotrexate, and 46% reported low medication adherence. Low medication satisfaction was associated with lower physical HRQOL. Pain, physical disability, fatigue, low wellbeing and active joints predicted unfavourable patient-reported outcomes. Late pain recovery at early disease course, predicted more pain, physical disability and lower HRQOL after 19 years. Our findings suggest that JIA has a detrimental effect on health-related outcomes. Information about long-term consequences of JIA and patients` medication experiences may increase health-care professionals` understanding of the burden of JIA