Abstract
BackgroundAchieving the best possible health-related quality of life (HRQoL) for a patient is an important treatment goal in juvenile idiopathic arthritis (JIA). We investigated the 36-month trajectories of HRQoL in children with JIA compared with healthy peers and identified the predictors of an unfavorable HRQoL.MethodsPatients with a recent JIA diagnosis were enrolled in the German inception cohort study ICON. As a peer group, friends of patients of the same age and sex were asked to cooperate. Children were prospectively followed and regularly questioned about their HRQoL using the Pediatric Quality of Life Inventory 4.0 (PedsQL). Disease activity was assessed by the clinical Juvenile Arthritis Disease Activity Score (cJADAS-10), and the burden of the child’s chronic illness on their family was assessed by the Family Burden Questionnaire (FaBel). Linear mixed models were used to compare the HRQoL of the patients and their peers. Associations between the health status of a patient at enrollment and an unfavorable HRQoL (PedsQL total < 79.3) at their 3-year follow-up (FU) were analyzed by logistic regression.ResultsData from 953 patients (median symptom duration 6 months, mean age 7.9 years) and 491 healthy peers (aged 8.4 years) were analyzed. During 3 years of FU, the disease activity and HRQoL of the patients improved significantly (cJADAS-10 from 9.8 (6.2) to 2.7 (3.6) and PedsQL total score from 71.7 (18.2) to 87.3 (13.9)). While the HRQoL of the patients varied among the several JIA categories at the time of enrollment, no significant differences were found at the 3-year FU. After 36 months, the HRQoL of the patients had largely converged with that of their healthy peers. JIA patients had a psychosocial health status comparable with their healthy peers, whereas a small significant mean difference remained in physical health (5.8, 95% confidence interval (CI) 4.1–7.6). Up to the 36-month FU, three-quarters of JIA patients attained a favorable HRQoL (PedsQL ≥ 79.3) which was achieved by 90% of the peers. A higher family burden, higher pain level, and lower well-being at enrollment were associated with an unfavorable HRQoL.ConclusionsUnder current therapeutic conditions, an HRQoL corresponding with that of healthy children is a realistic treatment goal in JIA.
Highlights
Achieving the best possible health-related quality of life (HRQoL) for a patient is an important treatment goal in juvenile idiopathic arthritis (JIA)
Several studies [4, 8,9,10,11,12,13,14,15] have shown that JIA patients have a lower HRQoL compared with healthy controls
Longitudinal studies of HRQoL in JIA patients are rare [4, 16,17,18], and some were performed to examine the effects of disease-modifying antirheumatic drugs (DMARDs) [16,17,18]
Summary
Achieving the best possible health-related quality of life (HRQoL) for a patient is an important treatment goal in juvenile idiopathic arthritis (JIA). JIA encompasses a clinically heterogeneous group of disorders with unknown causes which begin before the age of 16 years. These diseases cause both temporary and permanent disability as well as an impaired quality of life [2,3,4]. The treatment of JIA currently aims at achieving an inactive disease state, preventing disability and damage, and ensuring the age-appropriate development of affected children and adolescents. As JIA influences virtually all aspects of the child’s life and those of his or her family, achievement of an optimal healthrelated quality of life (HRQoL) is an important goal in clinical care. Longitudinal studies of HRQoL in JIA patients are rare [4, 16,17,18], and some were performed to examine the effects of disease-modifying antirheumatic drugs (DMARDs) [16,17,18]
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