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Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe.
- Source :
- European Journal of Health Economics; Apr2016 Supplement, Vol. 17, p99-108, 10p
- Publication Year :
- 2016
-
Abstract
- <bold>Objective: </bold>The aim of this study was to determine the economic burden from a societal perspective and health-related quality of life (HRQOL) of patients with Prader-Willi syndrome (PWS) in Europe.<bold>Methods: </bold>We conducted a cross-sectional study of patients with PWS from Spain, Bulgaria, Hungary, Germany, Italy, the UK, Sweden and France. Data on demographic characteristics, healthcare resource utilisation, informal care, labour productivity losses and HRQOL were collected from questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire.<bold>Results: </bold>A total of 261 patients completed the questionnaire. The average annual costs ranged from € 3937 to € 67,484 between countries; the reference year for unit prices was 2012. Direct healthcare costs ranged from € 311 to € 18,760, direct non-healthcare costs ranged from € 1269 to € 44,035, and loss of labour productivity ranged from € 0 to € 2255. Costs were also shown to differ between children and adults. The mean EQ-5D index score for adult PWS patients ranged between 0.40 and 0.81 and the mean EQ-5D visual analogue scale score ranged between 51.25 and 90.00.<bold>Conclusion: </bold>The main strengths of this study lie in our bottom-up approach to costing and in the evaluation of PWS patients from a broad societal perspective. This type of analysis is very scarce in the international literature on rare diseases in comparison with other illnesses. We conclude that PWS patients incur considerable societal costs and experience substantial deterioration in HRQOL. [ABSTRACT FROM AUTHOR]
- Subjects :
- PRADER-Willi syndrome
QUALITY of life
DEMOGRAPHIC characteristics
MEDICAL care use
LABOR productivity
MEDICAL care costs
PATIENTS
MEDICAL economics
SICK leave
MEDICAL care cost statistics
CAREGIVERS
COMPARATIVE studies
ECONOMIC aspects of diseases
RESEARCH methodology
MEDICAL cooperation
QUESTIONNAIRES
RESEARCH
SICKNESS Impact Profile
SOCIOECONOMIC factors
EVALUATION research
VISUAL analog scale
CROSS-sectional method
PSYCHOLOGY
ECONOMICS
Subjects
Details
- Language :
- English
- ISSN :
- 16187598
- Volume :
- 17
- Database :
- Complementary Index
- Journal :
- European Journal of Health Economics
- Publication Type :
- Academic Journal
- Accession number :
- 115247235
- Full Text :
- https://doi.org/10.1007/s10198-016-0788-z