To describe the longitudinal health status from childhood to adulthood in patients with juvenile idiopathic arthritis (JIA), compare outcomes after 19 years with those of controls, and identify early predictors of physical functioning, pain, and physical health-related quality of life (HRQOL).
Between 1995-2003, 96 patients with JIA (mean 6.1 ± 4.0 yrs, 67% female) were assessed within 18 months of diagnosis and every 6 months for the next 3 years with measures of JIA disease activity, physical functioning, pain, fatigue, and well-being. They were reassessed a mean of 18.9 ± 1.5 years later (mean age 25.1 ± 4.2 yrs) with measures of physical disability [Health Assessment Questionnaire-Disability Index (HAQ-DI)], pain, fatigue, well-being (visual analog scale), and physical and mental health-related quality of life (HRQOL; Medical Outcomes Study 12-item Short Form Health Survey, version 2).
During the first 3 years, physical disability improved (p < 0.001) and the proportion of patients reporting best possible well-being increased (p = 0.013), while pain and fatigue did not change. At 3- and 19-year followups, patients had similar levels of physical disability, well-being, and pain, but fatigue increased (p = 0.016) and the number of patients with HAQ-DI = 0 decreased (p = 0.001). After 19 years, patients had worse pain and physical HRQOL than controls (p < 0.001). Pain, active joints, and physical disability during the first 3 years were associated with more disability and pain and worse physical HRQOL after 19 years (p < 0.001-0.047).
Patients with JIA reported similar physical functioning, well-being, and pain at 3- and 19-year followups, but more fatigue after 19 years. Patients also had worse health status than controls after 19 years. Pain, active joints, and physical disability were early predictors of unfavorable outcomes.