Social/economic costs and health-related quality of life in patients with scleroderma in Europe |
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| Authors: | Julio López-Bastida Renata Linertová Juan Oliva-Moreno Pedro Serrano-Aguilar Manuel Posada-de-la-Paz Panos Kanavos Domenica Taruscio Arrigo Schieppati Georgi Iskrov Márta Péntek Claudia Delgado Johann Mathias von der Schulenburg Ulf Persson Karine Chevreul Giovanni Fattore The BURQOL-RD Research Network |
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| Affiliation: | 1.Universidad de Castilla-La Mancha,Toledo,Spain;2.Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC),Madrid,Spain;3.Fundación Canaria de Investigación Sanitaria (FUNCANIS),Las Palmas de Gran Canaria,Spain;4.Universidad de Castilla-La Mancha,Toledo,Spain;5.Evaluation and Planning Service at Canary Islands Health Service,Santa Cruz de Tenerife,Spain;6.Instituto de Investigación en Enfermedades Raras?(IIER),SpainRDR and CIBERER,Madrid,Spain;7.Health and Social Care Research Centre,London School of Economics and Political Science,London,UK;8.National Center for Rare Diseases,Istituto Superiore di Sanità (ISS),Rome,Italy;9.Centro di Ricerche Cliniche per Malattie Rare?Aldo e Cele Daccò,Istituto di Ricerche Farmacologiche Mario Negri,Ranica (Bergamo),Italy;10.Institute of Rare Diseases,Plovdiv,Bulgaria;11.Department of Social Medicine and Public Health, Faculty of Public Health,Medical University of Plovdiv,Plovdiv,Bulgaria;12.Department of Health Economics,Corvinus University of Budapest,Budapest,Hungary;13.Federación Espa?ola de Enfermedades Raras (FEDER),Madrid,Spain;14.Centre for Health Economics Research Hannover (CHERH)/Institute for Risk and Insurance,Leibniz Universit?t Hannover,Hannover,Germany;15.Swedish Institute for Health Economics,Lund,Sweden;16.URC Eco Ile de France, AP-HP,Paris,France;17.Université Paris Diderot, Sorbonne Paris Cité, ECEVE, UMRS 1123,Paris,France;18.INSERM, ECEVE, U1123,Paris,France;19.Centre for Research on Health and Social Care Management (CERGAS),Bocconi University,Milan,Italy |
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| Abstract: | ObjectiveThe 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 systemic sclerosis (SSc; scleroderma) in Europe.MethodsWe conducted a cross-sectional study of patients with SSc (involving both localised and systemic sclerosis) from Germany, Italy, Spain, France, the UK, Hungary and Sweden. Data on demographic characteristics, healthcare resource utilisation, informal care, labour 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) questionnaire.ResultsA total of 589 patients completed the questionnaire. The rate of patients with localised scleroderma, limited cutan and diffuse cutan SSc were 28, 68 and 4 %, respectively. Average annual costs varied from country to country and ranged from € 4607 to € 30,797 (reference year: 2012). Estimated direct healthcare costs ranged from € 1413 to € 17,300; direct non-healthcare costs ranged from € 1875 to € 4684 and labour productivity losses ranged from € 1701 to € 14,444. The mean EQ-5D index score for adult SSc patients varied from 0.49 to 0.75 and the mean EQ-5D visual analogue scale score was between 58.72 and 65.86.ConclusionThe main strengths of this study lie in our bottom-up approach to costing and our evaluation of SSs patients from a broad societal perspective. This type of analysis is very unusual in the international literature on rare diseases in comparison with other illnesses. We concluded that SSc patients incur considerable societal costs and experience substantial deterioration in HRQOL. |
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