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

被引:46
|
作者
Kuhlmann, A. [1 ]
Schmidt, T. [1 ]
Treskova, M. [1 ]
Lopez-Bastida, J. [2 ,3 ]
Linertova, R. [4 ]
Oliva-Moreno, J. [5 ]
Serrano-Aguilar, P. [6 ]
Posada-de-la-Paz, M. [7 ]
Kanavos, P. [8 ]
Taruscio, D. [9 ]
Schieppati, A. [10 ]
Iskrov, G. [11 ,12 ]
Pentek, M. [13 ]
Delgado, C. [14 ]
von der Schulenburg, J. M. [1 ]
Persson, U. [15 ]
Chevreul, K. [16 ,17 ,18 ]
Fattore, G. [19 ]
机构
[1] Leibniz Univ Hannover, Ctr Hlth Econ Res Hannover CHERH, Otto Brenner Strae 1, D-30159 Hannover, Germany
[2] Univ Castilla La Mancha, Talavera Reina, Toledo, Spain
[3] Red Investigacin Servicios Sanitarios Enfermedade, Madrid, Spain
[4] Fundacin Canaria Investigacin Sanitaria FUNCANIS, Palmas Gran Canaria, Las Palmas Gran Canaria, Spain
[5] Univ Castilla La Mancha, Toledo, Spain
[6] Evaluat & Planning Serv, Canary Islands Hlth Serv, Santa Cruz de La Palma, CA, Spain
[7] SpainRDR CIBERER, Inst Rare Dis Res, ISCIII, Madrid, Spain
[8] London Sch Econ & Polit Sci, Dept Social Policy & LSE Hlth, London, England
[9] Natl Ctr Rare Dis, Ist Superiore SanitA ISS, Rome, Italy
[10] Centro Ric Cliniche Malattie Rare Aldo Cele Dacc, Ist Ric Farmacologiche Mario Negri, Ranica Bergamo, Italy
[11] Inst Rare Dis, Plovdiv, Bulgaria
[12] Med Univ Plovdiv, Fac Publ Hlth, Dept Social Med & Publ Hlth, Plovdiv, Bulgaria
[13] Corvinus Univ Budapest, Dept Hlth Econ, Budapest, Hungary
[14] Federacin Espaola Enfermedades Raras FEDER, Madrid, Spain
[15] Swedish Inst Hlth Econ, Lund, Sweden
[16] URC Eco Ile France, AP HP, Paris, France
[17] Univ Paris Diderot, Sorbonne Paris Cite, ECEVE, UMRS 1123, Paris, France
[18] INSERM, ECEVE, F-U1123 Paris, France
[19] Bocconi Univ, Ctr Res Hlth & Social Care Management CERGAS, Milan, Italy
关键词
Rare diseases; Juvenile idiopathic arthritis; Costs; Costs of illness; Quality of life; BURDEN; CAREGIVERS; EUROQOL; DISEASE; IMPACT;
D O I
10.1007/s10198-016-0786-1
中图分类号
F [经济];
学科分类号
02 ;
摘要
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. 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. 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 a,not sign18,913 to a,not sign36,396 (reference year: 2012). Estimated direct healthcare costs ranged from a,not sign11,068 to a,not sign22,138; direct non-healthcare costs ranged from a,not sign7837 to a,not sign14,155 and labor productivity losses ranged from a,not sign0 to a,not sign8715. 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. 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.
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页码:79 / 87
页数:9
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