Science and Research

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

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 (euro6,660) and the highest in Germany (euro194,490). 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.

  • Cavazza, M.; Kodra, Y.; Armeni, P.; De Santis, M.; Lopez-Bastida, J.; Linertova, R.; Oliva-Moreno, J.; Serrano-Aguilar, P.; Posada-de-la-Paz, M.; Taruscio, D.; Schieppati, A.; Iskrov, G.; Gulacsi, L.; von der Schulenburg, J. M.; Kanavos, P.; Chevreul, K.; Persson, U.; Fattore, G.; Burqol-Rd Research Network

Keywords

  • Adolescent
  • Adult
  • Caregivers
  • *Cost of Illness
  • Cross-Sectional Studies
  • Europe
  • Female
  • *Health Care Costs/statistics & numerical data
  • Hemophilia A/*economics/psychology
  • Humans
  • Male
  • Middle Aged
  • Patient Care/economics
  • *Quality of Life
  • Sickness Impact Profile
  • Socioeconomic Factors
  • Surveys and Questionnaires
  • United Kingdom
  • Young Adult
  • *Haemophilia
  • *Health related quality of life
  • *Rare diseases
  • *Social burden
  • *Societal costs
Publication details
DOI: 10.1007/s10198-016-0785-2
Journal: The European journal of health economics : HEPAC : health economics in prevention and care
Pages: 53-65 
Work Type: Original
Location: BREATH
Disease Area: COPD
Partner / Member: LUH
Access-Number: 27048374
See publication on PubMed

DZL Engagements

chevron-down