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.
引用
收藏
页码:79 / 87
页数:9
相关论文
共 50 条
  • [31] Social economic costs and health-related quality of life in patients with degenerative cerebellar ataxia in Spain
    Lopez-Bastida, Julio
    Perestelo-Perez, Lilisbeth
    Monton-Alvarez, Fernando
    Serrano-Aguilar, Pedro
    MOVEMENT DISORDERS, 2008, 23 (02) : 212 - 217
  • [32] The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis
    April, Karine Toupin
    Cavallo, Sabrina
    Feldman, Debbie Ehrmann
    Ni, Andy
    QUALITY OF LIFE RESEARCH, 2012, 21 (07) : 1185 - 1191
  • [33] The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis
    Karine Toupin April
    Sabrina Cavallo
    Debbie Ehrmann Feldman
    Andy Ni
    Quality of Life Research, 2012, 21 : 1185 - 1191
  • [34] Early detection of high disease activity in juvenile idiopathic arthritis by sequential monitoring of patients' health-related quality of life scores
    You, Lu
    Qiu, Andrew
    Huang, Bin
    Qiu, Peihua
    BIOMETRICAL JOURNAL, 2020, 62 (05) : 1343 - 1356
  • [35] Functional Ability and Health-Related Quality of Life in Randomized Controlled Trials of Tocilizumab in Patients With Juvenile Idiopathic Arthritis
    Brunner, Hermine I.
    Chen, Chen
    Bovis, Francesca
    De Benedetti, Fabrizio
    Espada, Graciela
    Joos, Rik
    Akikusa, Jonathan
    Chaitow, Jeffrey
    Boteanu, Alina Lucica
    Kimura, Yukiko
    Rietschel, Christoph
    Siri, Daniel
    Smolewska, Elzbieta
    Schmeling, Heinrike
    Brown, Diane E.
    Martini, Alberto
    Lovell, Daniel J.
    Huang, Bin
    Ruperto, Nicolino
    ARTHRITIS CARE & RESEARCH, 2021, 73 (09) : 1264 - 1274
  • [36] The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis
    Sawyer, MG
    Whitham, JN
    Roberton, DM
    Taplin, JE
    Varni, JW
    Baghurst, PA
    RHEUMATOLOGY, 2004, 43 (03) : 325 - 330
  • [37] Oral health-related quality of life in 4–16-year-olds with and without juvenile idiopathic arthritis
    Elisabeth G. Gil
    Marit S. Skeie
    Josefine Halbig
    Birgitta Jönsson
    Stein Atle Lie
    Marite Rygg
    Johannes Fischer
    Annika Rosén
    Athanasia Bletsa
    Keijo Luukko
    Xie-Qi Shi
    Paula Frid
    Lena Cetrelli
    Karin Tylleskär
    Karen Rosendahl
    Anne N. Åstrøm
    BMC Oral Health, 22
  • [38] Costs and health-related quality of life in relation to caries
    Kastenbom, Lisa
    Falsen, Alexandra
    Larsson, Pernilla
    Sunnegardh-Gronberg, Karin
    Davidson, Thomas
    BMC ORAL HEALTH, 2019, 19 (01)
  • [39] Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom
    Angelis, Aris
    Kanavos, Panos
    Lopez-Bastida, Julio
    Linertova, Renata
    Nicod, Elena
    Serrano-Aguilar, Pedro
    BMC HEALTH SERVICES RESEARCH, 2015, 15
  • [40] Patients' perceptions of health-related quality of life in rheumatoid arthritis
    Nunez, Montserrat
    Nunez, Esther
    Sanchez, Alex
    Luis del Val, Jose
    Bonet, Maria
    Roig, Daniel
    Munoz, Dolors
    CLINICAL RHEUMATOLOGY, 2009, 28 (10) : 1157 - 1165