Abstract
Objective 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).
Methods Between 1995-2003, 96 JIA patients (mean 6.1±4.0 years ,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 wellbeing. They were reassessed a mean of 18.9±1.5 years later (mean age 25.1±4.2 years) with measures of physical disability (HAQ), pain, fatigue, wellbeing (VAS), and physical and mental HRQOL (S-12).
Results During the first 3 years, physical disability improved (p<0.001) and the proportion of patients reporting best possible wellbeing increased (p=0.013), while pain and fatigue did not change. At 3- and 19-year follow-ups, patients had similar levels of physical disability, wellbeing and pain, but fatigue increased (p=0.016) and the number of patients with HAQ=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).
Conclusion Patients with JIA reported similar physical functioning, wellbeing and pain at 3-and 19-year follow-up, 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 unfavourable outcomes.