Background/Purpose: Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic disease and a major cause of chronic disability in children aged below 16 years. Health-related quality of life (HrQoL) has become an important outcome measure for the perceived burden of disease and therapy effectiveness in the field of pediatric rheumatology. There is little knowledge about its diversification and determining factors in children with recently diagnosed JIA.

Methods: The diversification and determining factors of HrQoL were investigated by latent class analyses (LCA) in the ICON (Inception Cohort Of Newly-diagnosed patients with JIA) study, a prospective controlled observational multicentere study for long-term observation of patients diagnosed as JIA within the last 12 months. The evaluation comprised a self assessment by patients and parents via standardized questionnaires and clinical examinations by pediatric rheumatologists and ophthalmologists. HrQoL was measured by the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module. The PedsQL was completed by patients above an age of eight years and parents. The difference between both ratings and determining factors for the difference were investigated.

Results: Information about HrQoL was available for 426 patients. Differences in the patients and parents ratings could be investigated for 198 children aged above 8 years. More than half of the children (58.4%) were assigned to a group characterized by high PedsQL scores (range: 79.4, 95% CI: 76.3;82.5 for treatment problems to 98.3, 95% CI: 97.5;99.2 for daily activity) by LCA. Only 9% of the children were classified into a group with low HrQoL scores (mean total score 50.6, 95% CI: 45.3;55.9) and were diagnosed with polyarthrits. High HrQoL scores were associated with the ILAR category oligoarthritis (p<0.001) and a low disease activity (mean 2.7 on NRS 0-10, p<0.001). Patients with high HrQoL scores had significantly less emotional difficulties as measured by the Strength and Difficulties questionnaire. Interestingly, parents of patients with higher HrQoL scores had more likely a higher educational level (57% with more than 10 years of schooling). In general, the parents rating of HrQoL was lower than the rating of the children (difference in total score = 4.1, 95%CI: 2.5;5.7). The most pronounced differences were observed in the rating of emotional problems (Δ=8.3, 95%CI: 5.3;11.2) within the age groups (Δ=6.0 for age group 8-12 years versus 1.8 for age group 13-16 years, p<0.001). Children in the two ILAR categories systemic arthritis (Δ=8.8, 95%CI: 3.6;14.1) and psoriatic arthritis (Δ=6.6; 95%CI: 1.2;13.5) reported better HrQoL compared to the parents report.

Conclusion: More than half of the children report high HrQoL scores at the beginning of JIA. Disease related parameters as well as social and personal factors independently affect the patients´ overall well-being. Parents of younger children rated HrQoL remarkably lower than the children themselves, both patient- and proxy-reporting is therefore required to get a full picture of the burden of illness.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/perceived-health-related-quality-of-life-and-its-determining-factors-in-children-with-recent-onset-jia/