Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe |
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| Authors: | Karine Chevreul Morgane Michel Karen Berg Brigham Julio López-Bastida Renata Linertová Juan Oliva-Moreno Pedro Serrano-Aguilar Manuel Posada-de-la-Paz Domenica Taruscio Arrigo Schieppati Georgi Iskrov Márta Péntek Johann Matthias Graf von der Schulenburg Panos Kanavos Ulf Persson Giovani Fattore BURQOL-RD Research Network |
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| Affiliation: | 1.URC Eco Ile de France, AP-HP, H?tel Dieu,Paris,France;2.Université Paris Diderot, Sorbonne Paris Cité, ECEVE, UMRS 1123,Paris,France;3.INSERM, ECEVE, U1123,Paris,France;4.Université Paris Est,Créteil,France;5.University of Castilla-La Mancha,Toledo,Spain;6.Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC),Madrid,Spain;7.Fundación Canaria de Investigación Sanitaria (FUNCANIS),Canary Islands,Spain;8.University of Castilla-La Mancha,Toledo,Spain;9.Evaluation and Planning Service at Canary Islands Health Service,Santa Cruz de Tenerife,Spain;10.Institute of Rare Diseases Research, ISCIII, SpainRDR and CIBERER,Madrid,Spain;11.National Center for Rare Diseases,Istituto superiore di sanita (ISS),Rome,Italy;12.Centro di Ricerche Cliniche per Malattie Rare Aldo e Cele Daccò,Istituto di Ricerche Farmacologiche Mario Negri,Ranica (Bergamo),Italy;13.Institute of Rare Diseases,Plovdiv,Bulgaria;14.Department of Social Medicine and Public Health, Faculty of Public Health,Medical University of Plovdiv,Plovdiv,Bulgaria;15.Department of Health Economics,Corvinus University of Budapest,Budapest,Hungary;16.Centre for Health Economics Research Hannover (CHERH),Leibniz Universit?t Hannover,Hannover,Germany;17.Department of Social Policy and LSE Health,London School of Economics and Political Science,London,UK;18.The Swedish Institute for Health Economics,Lund,Sweden;19.Centro di Ricerche sulla Gestione dell’Assistenza Sanitaria e Sociale (CERGAS),Università Commerciale Luigi Bocconi,Milan,Italy |
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| Abstract: | ObjectivesOur goal was to provide data on the economic burden and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) and their caregivers in Europe.MethodsA cross-sectional study was carried out on adults and children with CF in eight European countries. Patients completed an anonymous questionnaire regarding their socio-demographic characteristics, use of healthcare services and presence of a caregiver. Costs were calculated with a bottom-up approach using unit costs from each participating country, and HRQOL was assessed using EQ-5D. The principal caregiver also answered a questionnaire on their characteristics, HRQOL and burden.ResultsA total of 905 patients with CF was included (399 adults and 506 children). The total average annual cost per patient varied from €21,144 in Bulgaria to €53,256 in Germany. Adults had higher direct healthcare costs than children, but children had much higher informal care costs (P < 0.0001). Total costs increased with patients’ level of dependence. In adults, mean utility fell between 0.640 and 0.870, and the visual analogue scale ranged from 46.0 to 69.7. There was no difference in caregiver HRQOL regardless of whether they cared for an adult or a child. However, caregivers who looked after a child had a significantly higher burden (P = 0.0013).ConclusionsOur study highlights the burden of CF in terms of costs and decreased HRQOL for both patients and their caregivers throughout Europe. |
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