Social/economic costs and health-related quality of life in patients with juvenile idiopathic arthritis in Europe

• Published in: The European journal of health economics Vol. 17; no. Suppl 1; pp. S79 - S87
• Main Authors: Kuhlmann, A., Schmidt, T., Treskova, M., López-Bastida, J., Linertová, R., Oliva-Moreno, J., Serrano-Aguilar, P., Posada-de-la-Paz, M., Kanavos, P., Taruscio, D., Schieppati, A., Iskrov, G., Péntek, M., Delgado, C., von der Schulenburg, J. M., Persson, U., Chevreul, K., Fattore, G.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer 01-04-2016; Springer Berlin Heidelberg; Springer Nature B.V
• Subjects: Adolescent; Adult; Arthritis; Arthritis, Juvenile - economics; Arthritis, Juvenile - psychology; Caregivers; Child; Child, Preschool; Cost of Illness; Costs; Cross-Sectional Studies; Direct costs; Direct material costs; Direct service costs; Disease; Economic Policy; Economics; Europe; Female; Health care; Health care costs; Health Care Costs - statistics & numerical data; Health care expenditures; Health Care Management; Health Economics; Hospital costs; Humans; Illnesses; Juvenile rheumatoid arthritis; Labor productivity; Male; Medicine; Medicine & Public Health; Middle Aged; Original Paper; Patient Care - economics; Patients; Pharmacoeconomics and Health Outcomes; Public Finance; Public Health; Quality of Life; Questionnaires; Rare diseases; Sick Leave - economics; Sickness Impact Profile; Socioeconomic Factors; Surveys and Questionnaires; Transportation costs; United Kingdom; Young Adult; Rare diseases; I1; Costs; Costs of illness; Juvenile idiopathic arthritis; Quality of life
• ISSN: 1618-7598; 1618-7601
• DOI: 10.1007/s10198-016-0786-1

Objective The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with juvenile idiopathic arthritis (JIA) in Europe. Methods We conducted a cross-sectional study of patients with JIA from Germany, Italy, Spain, France, the United Kingdom, Bulgaria, and Sweden. Data on demographic characteristics, healthcare resource utilization, informal care, labor productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D-5L) questionnaire. Results A total of 162 patients (67 Germany, 34 Sweden, 33 Italy, 23 United Kingdom, 4 France, and 1 Bulgaria) completed the questionnaire. Excluding Bulgarian results, due to small sample size, country-specific annual health care costs ranged from €18,913 to €36,396 (reference year: 2012). Estimated direct healthcare costs ranged from €11,068 to €22,138; direct non-healthcare costs ranged from €7837 to €14,155 and labor productivity losses ranged from €0 to €8715. Costs are also shown to differ between children and adults. The mean EQ-5D index score for JIA patients was estimated at between 0.44 and 0.88, and the mean EQ-5D visual analogue scale score was estimated at between 62 and 79. Conclusions JIA patients incur considerable societal costs and experience substantial deterioration in HRQOL in some countries. Compared with previous studies, our results show a remarkable increase in annual healthcare costs for JIA patients. Reasons for the increase are the inclusion of non-professional caregiver costs, a wider use of biologies, and longer hospital stays.