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

verfasst von

BURQOL-RD Research Network , 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

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.

Organisationseinheit(en)

Center for Health Economics Research Hannover (CHERH)

Externe Organisation(en)

Università Commerciale Luigi Bocconi
Istituto Superiore di Sanita
Universidad de Castilla-La Mancha
Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Fundación Canaria de Investigación Sanitaria (FUNCANIS)
Servicio canario de la Salud
Instituto de Salud Carlos III (ISCIII)
Istituto di Ricerche Farmacologiche Mario Negri
Institute for rare diseases (IRD)
Medical University of Plovdiv
Corvinus University of Budapest
London School of Economics and Political Science
AP-HP Assistance Publique - Hopitaux de Paris
Institut national de la santé et de la recherche médicale (INSERM)
The Swedish Institute for Health Economics (IHE)
Universite Paris 7

Typ

Artikel

Journal

European Journal of Health Economics

Band

17

Seiten

53-65

Anzahl der Seiten

13

ISSN

1618-7598

Publikationsdatum

04.2016

Publikationsstatus

Veröffentlicht

Peer-reviewed

Ja

ASJC Scopus Sachgebiete

Volkswirtschaftslehre, Ökonometrie und Finanzen (sonstige), Health policy

Ziele für nachhaltige Entwicklung

SDG 3 – Gute Gesundheit und Wohlergehen

Elektronische Version(en)

https://doi.org/10.1007/s10198-016-0785-2 (Zugang: Geschlossen)