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Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

(2016) Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe. European Journal of Health Economics, 17. pp. 31-42. ISSN 1618-7598

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Identification Number: 10.1007/s10198-016-0783-4


Background The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. Methods We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. Results A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from €9509 to €49,233 (reference year 2012). Estimated direct healthcare costs ranged from €419 to €10,688; direct non-healthcare costs ranged from €7449 to €37,451 and labour productivity losses ranged from €0 to €7259. The average annual cost per patient across all countries was estimated at €31,390, out of which €5646 accounted for direct health costs (18.0 %), €23,483 accounted for direct non-healthcare costs (74.8 %), and €2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. Conclusion In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.

Item Type: Article
Official URL:
Additional Information: © 2016 The Authors
Divisions: European Institute
Social Policy
LSE Health
Subjects: H Social Sciences > HN Social history and conditions. Social problems. Social reform
Sets: Departments > European Institute
Departments > Social Policy
Research centres and groups > LSE Health
Date Deposited: 03 May 2016 08:43
Last Modified: 20 Oct 2021 02:23
Projects: A101205
Funders: European Union Agency for Network and Information Security

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