A Kuhlmann1, T Schmidt2, M Treskova2, J López-Bastida3,4, R Linertová4,5, J Oliva-Moreno4,6, P Serrano-Aguilar4,7, M Posada-de-la-Paz8, P Kanavos9, D Taruscio10, A Schieppati11, G Iskrov12,13, M Péntek14, C Delgado15, J M von der Schulenburg2, U Persson16, K Chevreul17,18,19, G Fattore20. 1. Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Otto-Brenner-Straße 1, 30159, Hannover, Germany. ak@cherh.de. 2. Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Otto-Brenner-Straße 1, 30159, Hannover, Germany. 3. Universidad de Castilla-La Mancha, Talavera de la Reina, Toledo, Spain. 4. Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Madrid, Spain. 5. Fundación Canaria de Investigación Sanitaria (FUNCANIS), Las Palmas de Gran Canaria, Spain. 6. Universidad de Castilla-La Mancha, Toledo, Spain. 7. Evaluation and Planning Service at Canary Islands Health Service, Santa Cruz de Tenerife, Spain. 8. Institute of Rare Diseases Research, ISCIII, SpainRDR & CIBERER, Madrid, Spain. 9. Department of Social Policy and LSE Health, London School of Economics and Political Science, London, United Kingdom. 10. National Center for Rare Diseases, Istituto Superiore di Sanità (ISS), Rome, Italy. 11. Centro di Ricerche Cliniche per Malattie Rare Aldo e Cele Daccò, Istituto di Ricerche Farmacologiche Mario Negri, Ranica (Bergamo), Italy. 12. Institute of Rare Diseases, Plovdiv, Bulgaria. 13. Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria. 14. Department of Health Economics, Corvinus University of Budapest, Budapest, Hungary. 15. Federación Española de Enfermedades Raras (FEDER), Madrid, Spain. 16. Swedish Institute for Health Economics, Lund, Sweden. 17. URC Eco Ile de France, AP-HP, Paris, France. 18. Université Paris Diderot, Sorbonne Paris Cité, ECEVE, UMRS 1123, Paris, France. 19. INSERM, ECEVE, U1123, Paris, France. 20. Centre for Research on Health and Social Care Management (CERGAS), Bocconi University, Milan, Italy.
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.
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.
Entities:
Keywords:
Costs; Costs of illness; Juvenile idiopathic arthritis; Quality of life; Rare diseases
Authors: Isaac Aranda-Reneo; Luz María Peña-Longobardo; Juan Oliva-Moreno; Svenja Litzkendorf; Isabelle Durand-Zaleski; Eduardo F Tizzano; Julio López-Bastida Journal: Int J Environ Res Public Health Date: 2020-12-02 Impact factor: 3.390