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The European Journal of Health Economics
Erschienen in: The European Journal of Health Economics 1/2016

05.04.2016 | Original Paper

Social/economic costs and quality of life in patients with haemophilia in Europe

verfasst von: 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

Erschienen in: The European Journal of Health Economics | Sonderheft 1/2016

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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.
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Metadaten
Titel
Social/economic costs and quality of life in patients with haemophilia in Europe
verfasst von
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
Publikationsdatum
05.04.2016
Verlag
Springer Berlin Heidelberg
Erschienen in
The European Journal of Health Economics / Ausgabe Sonderheft 1/2016
Print ISSN: 1618-7598
Elektronische ISSN: 1618-7601
DOI
https://doi.org/10.1007/s10198-016-0785-2

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