Background JIA is the most common chronic inflammatory rheumatic disease in childhood. It carries a high risk for life-long morbidity and disability. Longitudinal cost-of-illness studies are crucial, given the availability of new drugs, which may alter the course of disease.
Objectives To analyze the societal economic burden of JIA, the share of cost components, the shift of costs over time, as well as the influence of disease-associated and sociodemographic parameters on the costs in newly diagnosed JIA patients in paediatric rheumatology care.
Methods All data were collected within the ongoing German JIA inception cohort ICON, in which patients with early JIA (diagnosis <12 months) from 11 paediatric rheumatology sites are included. Patients are quarterly assessed by a physician, parent and patient questionnaire. A cost diary is filled out by parents at baseline and at 12 month follow-up. Thereby data on disease-related resource consumption, patients' health status and treatment, as well as families' out-of-pocket costs is provided. The unit prices for all documented resources were established based on public cost information for 2011. The association between costs and clinical as well as sociodemographic variables were determined by regression analyses.
Results Analyses were based on patients (N=333) with baseline (2.7 month [Median] after diagnosis) and one-year follow-up data. Half of the population (2/3 female, median age 7 years) had oligoarthritis (49%), followed by polyarthritis (29%) and enthesitis-related arthritis (10%). In the year before enrollment, the mean total costs accumulated to 6,186 euros (SD: 7,149.75; Median: 3,818; IQR: 5,902.05) per patient and year. Almost half of the total costs were due to hospitalization, 23% to outpatient care except medication, and 20% to indirect costs. Medication only accounted for 3% of the total costs. Within the first year of routine paediatric rheumatology care, the mean total costs accumulated to 9,754 euros (SD: 21,011.92; Median 3,540; IQR: 10,879.73) per patient and year. Now medication, mostly due to biologics (in 19% of the patients), was the main cost driver and responsible for 43% of the total costs. Inpatient care, outpatient care, and indirect costs due to parents'absenteeism from work accounted for 28%, 15%, and 10% of the total costs, respectively. Costs were significantly associated with the JIA subgroup, patient's disease activity (JADAS), functional status (CHAQ), quality of life (PedsQL), and other disease-related and sociodemographic parameters. The mean costs borne by the families amounted to 539 euros (Median: 260) in the year before study enrollment, and 836 euros (Median: 228) in the first year of follow-up, which corresponded to 1.5% and 2.3% of the families' net income.
Conclusions In addition to the huge burden on the individual, JIA imposes a relevant economic burden to society. All costs incurred within the early JIA disease must be considered in the light of the patients' long-term outcomes.
Disclosure of Interest M. Storms: None declared, J. Klotsche: None declared, I. Liedmann: None declared, M. Niewerth: None declared, A. Thon: None declared, G. Ganser: None declared, J.-P. Haas: None declared, A. Hospach: None declared, K. Minden Grant/research support: Pfizer, Abbvie. ICON is funded by the Federal Ministry of Research (FKZ: 01ER0812)., Consultant for: Pfizer, Abbvie, Roche/Chugai, Novartis