Social/economic costs and quality of life in patients with haemophilia in Europe |
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| Authors: | 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 BURQOL-RD Research Network |
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| Affiliation: | 1.Centre for Research on Health and Social Care Management (CERGAS),Bocconi University,Milan,Italy;2.National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS),Rome,Italy;3.University of Castilla-La Mancha,Talavera de la Reina,Spain;4.Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC),Madrid,Spain;5.Fundación Canaria de Investigación Sanitaria (FUNCANIS),Las Palmas de Gran Canaria,Spain;6.University of Castilla-La Mancha,Toledo,Spain;7.Evaluation and Planning Service at Canary Islands Health Service,Santa Cruz de Tenerife,Spain;8.Institute of Rare Diseases Research, ISCIII, SpainRDR & CIBERER,Madrid,Spain;9.“Aldo and Cele Daccò” Clinical Research Center for Rare Diseases, Mario Negri Institute for Pharmacological Research,Ranica (Bergamo),Italy;10.Institute of Rare Diseases,Plovdiv,Bulgaria;11.Department of Health Economics,Corvinus University of Budapest,Budapest,Hungary;12.Centre for Health Economics Research Hannover (CHERH),Leibniz Universit?t Hannover,Hanover,Germany;13.Department of Social Policy and LSE Health,London School of Economics and Political Science,London,UK;14.URC Eco Ile de France, AP-HP,Paris,France;15.The Swedish Institute for Health Economics,Lund,Sweden;16.Department of Social Medicine and Public Health, Faculty of Public Health,Medical University of Plovdiv, Plovdiv,Bulgaria;17.Université Paris Diderot, Paris,France;18.INSERM, ECEVE, Paris,France |
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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 haemophilia in Europe.MethodsWe conducted a cross-sectional study of patients with haemophilia from Bulgaria, France, Germany, Hungary, Italy, Spain Sweden and the UK. Data on demographic characteristics, health resource utilisation, informal care, loss of labour productivity and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. The costs have been estimated from a societal perspective adopting a bottom-up approach.ResultsA total of 401 questionnaires were included in the study, of which 339 were collected from patients with haemophilia and 62 from caregivers. The lowest average annual cost per person was reported in Bulgaria (€6,660) and the highest in Germany (€194,490). Our results demonstrate both a large difference from country to country in the average annual cost per patient in 2012 and the driving role of drugs in costs. Drugs represent nearly 90 % of direct healthcare costs in a majority of the countries analysed (Hungary, Italy, Spain and Germany). In Bulgaria, France and Sweden, however, healthcare services (visits, tests and hospitalisations) prevail. Costs are also shown to differ between children and adults. The mean EQ-5D index score for adult patients was 0.69 and mean EQ-5D VAS was 66.6. The mean EQ-5D index score for carers was 0.87 and mean EQ-5D VAS was 75.5. In the disability score, 60 % showed no disability and measuring caregiver burden with the Zarit Index produced an overall mean score of 25.3.ConclusionWe have shown that haemophilia is associated with a substantial economic burden and impaired HRQOL. Studies on cost of illness and HRQOL are important for haemophilia as the future of this disease is likely to change with the development of new innovative treatments. The introduction of these treatments will most likely impact future costs related to haemophilia. |
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