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
  • [41] Sleep and its relationship to health-related quality of life in children and adolescents with inactive juvenile idiopathic arthritis
    Tsipoura, Georgia
    Lazaratou, Helen
    Damigos, Dimitrios
    Vougiouka, Olga
    EGYPTIAN RHEUMATOLOGIST, 2018, 40 (03) : 197 - 201
  • [42] Health-Related Quality of Life in Juvenile Idiopathic Arthritis: A Systematic Review of Phase III Clinical Trials
    Romano, Federica
    Di Scipio, Federica
    Baima, Giacomo
    Franco, Francesco
    Aimetti, Mario
    Berta, Giovanni Nicolao
    JOURNAL OF CLINICAL MEDICINE, 2025, 14 (01)
  • [43] Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas.: The PRINTO multinational quality of life cohort study
    Gutierrez-Suarez, R.
    Pistorio, A.
    Cruz, A. Cespedes
    Norambuena, X.
    Flato, B.
    Rumba, I.
    Harjacek, M.
    Nielsen, S.
    Susic, G.
    Mihaylova, D.
    Huemer, C.
    Melo-Gomes, J.
    Andersson-Gare, B.
    Balogh, Z.
    De Cunto, C.
    Vesely, R.
    Pagava, K.
    Romicka, A. M.
    Burgos-Vargas, R.
    Martini, A.
    Ruperto, N.
    RHEUMATOLOGY, 2007, 46 (02) : 314 - 320
  • [44] Health related quality of life survey about children and adolescents with juvenile idiopathic arthritis
    Amine, Bouchra
    Rostom, Samira
    Benbouazza, Karima
    Abouqal, Radouane
    Hajjaj-Hassouni, Najia
    RHEUMATOLOGY INTERNATIONAL, 2009, 29 (03) : 275 - 279
  • [45] Social/economic costs and quality of life in patients with haemophilia in Europe
    Marianna Cavazza
    Yllka Kodra
    Patrizio Armeni
    Marta De Santis
    Julio López-Bastida
    Renata Linertová
    Juan Oliva-Moreno
    Pedro Serrano-Aguilar
    Manuel Posada-de-la-Paz
    Domenica Taruscio
    Arrigo Schieppati
    Georgi Iskrov
    László Gulácsi
    Johann Matthias Graf von der Schulenburg
    Panos Kanavos
    Karine Chevreul
    Ulf Persson
    Giovanni Fattore
    The European Journal of Health Economics, 2016, 17 : 53 - 65
  • [46] Health-related quality of life during early aggressive treatment in patients with polyarticular juvenile idiopathic arthritis: results from randomized controlled trial
    Tarkiainen, Maarit
    Tynjala, Pirjo
    Vahasalo, Paula
    Kroger, Liisa
    Aalto, Kristiina
    Lahdenne, Pekka
    PEDIATRIC RHEUMATOLOGY, 2019, 17 (01)
  • [47] Health-related quality of life in patients with Rheumatoid Arthritis
    Ferreira, Lara Noronha
    Ferreira, Pedro Lopes
    Baleiro, Rita Rodrigues
    ACTA REUMATOLOGICA PORTUGUESA, 2008, 33 (03): : 331 - 342
  • [48] Abatacept Improves Health-Related Quality of Life, Pain, Sleep Quality, and Daily Participation in Subjects With Juvenile Idiopathic Arthritis
    Ruperto, Nicolino
    Lovell, Daniel J.
    Li, Tracy
    Sztajnbok, Flavio
    Goldenstein-Schainberg, Claudia
    Scheinberg, Morton
    Calvo Penades, Inmaculada
    Fischbach, Michael
    Orozco Alcala, Javier
    Hashkes, Philip J.
    Hom, Christine
    Jung, Lawrence
    Lepore, Loredana
    Oliveira, Sheila
    Wallace, Carol
    Alessio, Maria
    Quartier, Pierre
    Cortis, Elisabetta
    Eberhard, Anne
    Simonini, Gabriele
    Lemelle, Irene
    Chalom, Elizabeth Candell
    Sigal, Leonard H.
    Block, Alan
    Covucci, Allison
    Nys, Marleen
    Martini, Alberto
    Giannini, Edward H.
    ARTHRITIS CARE & RESEARCH, 2010, 62 (11) : 1542 - 1551
  • [49] The effects on Oral Related Quality of Life induced by periodontitis in patients with juvenile idiopathic arthritis
    Polizzi, Alessandro
    Santonocito, Simona
    Di Stefano, Mattia
    Ferlito, Sebastiano
    Indelicato, Francesco
    Palazzo, Giuseppe
    MEDITERRANEAN JOURNAL OF CLINICAL PSYCHOLOGY, 2020, 8 (01): : 1 - 16
  • [50] Orofacial symptoms and oral health-related quality of life in juvenile idiopathic arthritis: a two-year prospective observational study
    Hanna Rahimi
    Marinka Twilt
    Troels Herlin
    Lynn Spiegel
    Thomas Klit Pedersen
    Annelise Küseler
    Peter Stoustrup
    Pediatric Rheumatology, 16