Background Health-related quality of life (HRQoL) soon after diagnosis predicts outcomes for patients with juvenile idiopathic arthritis (JIA). However, there is little knowledge about its diversification and determining factors in early JIA.
Objectives To study HRQoL in patients recently diagnosed with JIA, to identify determining factors of HRQoL, and to detect a high-risk subpopulation.
Methods HRQoL was studied in 426 children with a disease duration of 6 months (median) who have been included in the Inception Cohort Of Newly-diagnosed patients with JIA (ICON). The Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales, the PedsQL 3.0 Rheumatology Module, the EuroQol-5-Dimension (EQ-5D), and the Strength and Difficulties Questionnaire (SDQ) were administered to the parents. Latent class analysis (LCA) was conducted to identify groups of children with a homogeneous pattern in the nine domains of the PedsQL within a group and distinct patterns between the groups. The associated sociodemographic, clinical and patient characteristics were compared between the groups by multinomial logistic regression analyses.
Results The HRQoL scores of all nine domains ranged between 63.6 for pain and 91.6 for daily activity in the whole cohort of 426 patients at assessment. The LCA model resulted in three distinct groups of children with similar HRQoL levels and patterns. More than half (58.4%) of the children were assigned to a group (G1) with high HRQoL, and 9% to a group (G3) with lower HRQoL scores across all domains. The in-between group (G2) which accounted for a third of the patients was characterized by moderate HRQoL scores in all domains except for daily activity (91.8).
G1 was composed of patients who had mainly the ILAR category oligoarthritis (60%), a relatively low disease activity (mean 2.7 on NRS 0-10), and a relatively low number of painful or swollen joints at assessment (mean 3). Compared to the other groups, these patients had lower scores in the SDQ or less emotional difficulties (total mean 7.2) and a lower rate of anxiety and depressive symptoms (34%). In addition, at least one of their parents had a higher educational level (57% with more than 10 years of schooling).
In contrast, G3 included children who were more likely to have polyarticular JIA (67%), high disease activity (mean 5.8), and a high number of painful or swollen joints (mean 13). They suffered significantly more often from morning stiffness (57%). In addition, they had more often emotional difficulties or increased scores in the SDQ (total mean 13.0), and higher rates of anxiety and depressive symptoms (84.3%). The educational background of their parents was significantly lower than in G1 (25% with more than 10 years of schooling).
Conclusions LCA identified three groups of children who significantly relevantly differed in their perceived HRQoL. In patients with poor HRQoL at disease onset not only disease-related parameters, but also social and personal factors independently affect the patients’ overall well-being. HRQoL measurement early in the disease course is necessary in order to identify patients at risk for an unfavorable outcome and to intervene in time.
Supported by a grant from the Federal Ministry of Education and Research (FKZ 01ER0812)
Disclosure of Interest None Declared
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