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

A. Kuhlmann (), T. Schmidt, M. Treskova, J. López-Bastida, R. Linertová, Juan Oliva (), P. Serrano-Aguilar, M. Posada- de-la-Paz, P. Kanavos, D. Taruscio, A. Schieppati, G. Iskrov, Márta Péntek, C. Delgado, Johann Graf von der Schulenburg, U. Persson, K. Chevreul and G. Fattore
Additional contact information
A. Kuhlmann: Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover
T. Schmidt: Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover
M. Treskova: Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover
J. López-Bastida: Universidad de Castilla-La Mancha
R. Linertová: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
P. Serrano-Aguilar: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
M. Posada- de-la-Paz: Institute of Rare Diseases Research, ISCIII, SpainRDR & CIBERER
P. Kanavos: London School of Economics and Political Science
D. Taruscio: National Center for Rare Diseases, Istituto Superiore di Sanità (ISS)
A. Schieppati: Centro di Ricerche Cliniche per Malattie Rare Aldo e Cele Daccò, Istituto di Ricerche Farmacologiche Mario Negri
G. Iskrov: Institute of Rare Diseases
C. Delgado: Federación Española de Enfermedades Raras (FEDER)
U. Persson: Swedish Institute for Health Economics
K. Chevreul: AP-HP
G. Fattore: Bocconi University

The European Journal of Health Economics, 2016, vol. 17, issue 1, No 8, 79-87

Abstract: Abstract 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 biologics, and longer hospital stays.

Keywords: Rare diseases; Juvenile idiopathic arthritis; Costs; Costs of illness; Quality of life (search for similar items in EconPapers)
JEL-codes: I1 (search for similar items in EconPapers)
Date: 2016
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (14)

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DOI: 10.1007/s10198-016-0786-1

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