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Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe.
- Source :
- European Journal of Health Economics; Apr2016 Supplement, Vol. 17, p43-52, 10p
- Publication Year :
- 2016
-
Abstract
- <bold>Objective: </bold>To estimate the social/economic costs of fragile X syndrome (FXS) in Europe and to assess the health-related quality of life (HRQOL) of patients and caregivers.<bold>Methods: </bold>A cross-sectional study was conducted in a sample of European countries. Patients were recruited through patients' associations. Data on their resource use and absence from the labour market were retrospectively obtained from an online questionnaire. Costs were estimated by a bottom-up approach and the EuroQol-5 Domain (EQ-5D) questionnaire was used to measure patients' and caregivers' HRQOL.<bold>Results: </bold>Five countries were included in the analysis. The mean annual cost of FXS per patient varied from €4951 in Hungary to €58,862 in Sweden. Direct non-healthcare costs represented the majority of costs in all countries but there were differences in the share incurred by formal and informal care among those costs. Costs were also shown to differ between children and adults. Mean EQ-5D utility score for adult patients varied from 0.52 in France (n = 42) to 0.73 in Hungary (n = 2), while for caregivers this score was consistently inferior to 0.87.<bold>Conclusion: </bold>Our findings underline that, although its prevalence is low, FXS is costly from a societal perspective. They support the development of tailored policies to reduce the consequences of FXS on both patients and their relatives. [ABSTRACT FROM AUTHOR]
- Subjects :
- FRAGILE X syndrome
QUALITY of life
MEDICAL care costs
CAREGIVERS
MEDICAL economics
PATIENTS
MEDICAL care cost statistics
COMPARATIVE studies
ECONOMIC aspects of diseases
RESEARCH methodology
MEDICAL cooperation
QUESTIONNAIRES
RESEARCH
SICK leave
SICKNESS Impact Profile
SOCIOECONOMIC factors
EVALUATION research
ACQUISITION of data
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 :
- 115247239
- Full Text :
- https://doi.org/10.1007/s10198-016-0784-3