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 (), Pedro Serrano-Aguilar, Manuel Posada- de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, László Gulácsi, Johann Matthias Graf Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson and Giovanni Fattore
Additional contact information
Marianna Cavazza: Bocconi University
Yllka Kodra: National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS)
Patrizio Armeni: Bocconi University
Marta De Santis: National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS)
Julio López-Bastida: University of Castilla-La Mancha
Renata Linertová: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Pedro Serrano-Aguilar: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Manuel Posada- de-la-Paz: Institute of Rare Diseases Research, ISCIII, SpainRDR & CIBERER
Domenica Taruscio: National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS)
Arrigo Schieppati: “Aldo and Cele Daccò” Clinical Research Center for Rare Diseases, Mario Negri Institute for Pharmacological Research
Georgi Iskrov: Institute of Rare Diseases
László Gulácsi: Corvinus University of Budapest
Johann Matthias Graf Schulenburg: Leibniz Universität Hannover
Panos Kanavos: London School of Economics and Political Science
Karine Chevreul: URC Eco Ile de France, AP-HP
Ulf Persson: The Swedish Institute for Health Economics
Giovanni Fattore: Bocconi University

The European Journal of Health Economics, 2016, vol. 17, issue 1, No 6, 53-65

Abstract: Abstract Objective 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 haemophilia in Europe. Methods We 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. Results A 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. Conclusion We 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.

Keywords: Rare diseases; Haemophilia; Health related quality of life; Societal costs; Social burden (search for similar items in EconPapers)
Date: 2016
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Citations: View citations in EconPapers (8)

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DOI: 10.1007/s10198-016-0785-2

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